Sandis’s teacher is retiring after this school year. She has been teaching 32 years, and she is an awesome teacher. It is apparent that she has been teaching for this long not because she is tired after the 32 years, but because she is so talented and honed in her skills. Her love for Sandis shines through, and her understanding of his needs is incredible. I feel as though I am in an honest partnership with her when it comes to my son’s education.
I haven’t talked so much about Sandis’s IEP meeting because in most regards it is still in process. We went over possible goals, but I didn’t leave feeling like we had cemented most goals. I also felt as though the meeting was disorganized and didn’t cover all the bases. Part of the time I was defending how I completed the Vineland II questionnaire, as they were simply “amazed” by what I had inicated what Sandis was regularly and not regularly able to do. I felt like the only people in the meeting who understood Sandis’s functional and adaptive needs in the room were myself and his teacher. I was impressed by Sandis’s teacher stating how she felt he needed an aide. Prior to the meeting, she had asked me not to tell anyone that she had said this. She took the step that isnt’ much encouraged in our district.
Sandis’s teacher had to leave before the meeting was completed, and after she left, I was told in no uncertain terms that Sandis would not get an aide on this IEP. They wanted to put this IEP into place without the aide and if he does not show progress then they can examine implementing an aide. I felt quite a bit of frustration in regards to this. Sandis’s teacher was very clear that she felt Sandis would not succeed without a shared aide in first grade. Seeing as how she spends basically more time during the week than I do in one-on-one time with my son I feel confident in that assertion. I also felt that if we put this IEP into place without a provision for an aide, then showing progress will not be that difficult, and denying an aide in the future on the basis of “showing progress” will be an easy case to develop. Progress is so subjective. Would what they consider progress be reasonable progress to me?
One of our main goals is Sandis transitioning to using the large restroom by first grade. It isn’t that Sandis isn’t potty trained, it is that Sandis becomes overwhelmed in the large restroom and basically “gets lost.” He will literally forget why he is there as he flushes toilets, turns water on and off, switches lights on and off, and runs around enjoying the echoes as he yelps. This is only one basic functional task Sandis needs to achieve by first grade, and I just don’t see it happening with what little amount of intervention they do have planned. So what do they do if Sandis can’t use the large restroom on his own by first grade? What intervention do they pull out of their hat then when they have no option but the big potty, and things are predictably haywire? Sandis is not delayed enough to be in an enclosed classroom, they have to make it work mainstream, and I can imagine the stress this can cause him if we don’t take the reins now and in good spirits embrace his strengths but also HONESTLY work to help him build up his deficits.
I hadn’t had a chance to talk with Sandis’s teacher about the rest of the IEP meeting until yesterday, as conferences have been in the works at his school. Yesterday evening I got my chance. She is one spunky lady! After a bit of a conversation, she looked around to see if anyone was around that could hear her, and she said: “One word, Sarah: PACER.” She then looked around again, fitfully checking to see who was around and said: “Get an advocate and find out your rights, and don’t sign anything until you have what he needs on it. This IEP is what he is taking into first grade with him.”
Holy smokes! I was a bit uncomfortable about how the IEP meeting had panned out. I am glad I got her input. And you know what I did? Today I put in a call to PACER, and I am expecting a call back from an advocate.
The funny thing about all of this is Sandis’s teacher at first asked me not to tell anyone that she had told me to call PACER, but then, after a few more minutes of conversation she says: “You know what? DO tell them I told you to call PACER. I won’t be here much longer, and Sandis NEEDS this!” I take it as this, she is retiring next year, and she has an opportunity to not really care that the district is cutting special ed funding all over the place. She has an opportunity to help Sandis be all that he can be, despite raised eyebrows and discouragement from the district. And that is AWESOME. If only ALL teachers shared her sentiments!
Wednesday, February 28, 2007
Tuesday, February 27, 2007
A Better Point of View
I found this here.
The following article really touched my heart. And it is right. It made me look at myself and how I view my Sandis and my Gracie.
Autism! Pdd nos! Aspergers syndrome! ADHD! High functioning! Low functioning! Delayed! Hearing these words about your child can be crushing. They can devastate you to your very core. The good news is THEY DON’T HAVE TO! Let me tell you why….
It doesn’t matter. That’s right. It simply doesn’t matter. If you want to really help your child then read on. I’m serious. Don’t be like the thousands who wish they had “lived” this concept sooner.
Pretend for a moment you have a newborn. He is simply perfect. By the time he is two years old, his fingers are so long, they look strange. You go to a renowned physician and ask “What’s wrong with my child? Why are his fingers so long?”. The physician smiles and says “Your child has a condition called spindle fingers. He has a natural gift for playing musical instruments. Many dream of having this talent”.
You’re absolutely thrilled and can’t wait to share the news. You rush home but on the way you stop to buy a toy xylophone, piano, drum set and flute. You set them out on the floor when you get home and you watch proudly as your toddler strums each one of them. You don’t care that everyone else thinks it just sounds like noise. You have a budding musician on your hands and he’s practicing!
As the months go by you encourage your child to play instruments. He gets a little older and expresses his preference for the piano. You take him to piano lessons, listen to famous piano players and perhaps even go to concerts. You explain to your son that his fingers are long because he is talented at playing the piano. Your son plays the piano beautifully. He is proud of his fingers and his talent. You are proud of your son.
You run into the physician a few years later. You tell him proudly about your child’s piano skills. He smiles broadly and says “I made it all up. There is no condition called spindle fingers”. “What?” you shriek “that’s impossible. My child is an excellent player”.
“Of course he is” says the physician “It’s called belief. You believed in your child’s fingers. You believed in his talent. You encouraged him. It didn’t matter how many mistakes he made. You hardly heard them because you knew he was on the path to greatness. Your son felt your belief. He saw it in your eyes. He felt it course through his being. It inspired him. Every time he looked at his long fingers he thought about his talent. He felt proud of himself. He knew he could do it. Your unwavering faith inspired him to be the best he can be”.
My advice to you is this. Forget about the boxes and the labels. Ignore the judgments. Your child is fascinating. Your child is a unique and wonderful being who is incredibly special. Give him the tools. Encourage him on his journey. Never lose faith in him. Stand by his side. Teach him as much as you can. Watch in delight as he soars far beyond everyone’s expectations. Everyone’s except yours and all those who joined your belief along the way!
- By Jene Aviram
The following article really touched my heart. And it is right. It made me look at myself and how I view my Sandis and my Gracie.
Autism! Pdd nos! Aspergers syndrome! ADHD! High functioning! Low functioning! Delayed! Hearing these words about your child can be crushing. They can devastate you to your very core. The good news is THEY DON’T HAVE TO! Let me tell you why….
It doesn’t matter. That’s right. It simply doesn’t matter. If you want to really help your child then read on. I’m serious. Don’t be like the thousands who wish they had “lived” this concept sooner.
Pretend for a moment you have a newborn. He is simply perfect. By the time he is two years old, his fingers are so long, they look strange. You go to a renowned physician and ask “What’s wrong with my child? Why are his fingers so long?”. The physician smiles and says “Your child has a condition called spindle fingers. He has a natural gift for playing musical instruments. Many dream of having this talent”.
You’re absolutely thrilled and can’t wait to share the news. You rush home but on the way you stop to buy a toy xylophone, piano, drum set and flute. You set them out on the floor when you get home and you watch proudly as your toddler strums each one of them. You don’t care that everyone else thinks it just sounds like noise. You have a budding musician on your hands and he’s practicing!
As the months go by you encourage your child to play instruments. He gets a little older and expresses his preference for the piano. You take him to piano lessons, listen to famous piano players and perhaps even go to concerts. You explain to your son that his fingers are long because he is talented at playing the piano. Your son plays the piano beautifully. He is proud of his fingers and his talent. You are proud of your son.
You run into the physician a few years later. You tell him proudly about your child’s piano skills. He smiles broadly and says “I made it all up. There is no condition called spindle fingers”. “What?” you shriek “that’s impossible. My child is an excellent player”.
“Of course he is” says the physician “It’s called belief. You believed in your child’s fingers. You believed in his talent. You encouraged him. It didn’t matter how many mistakes he made. You hardly heard them because you knew he was on the path to greatness. Your son felt your belief. He saw it in your eyes. He felt it course through his being. It inspired him. Every time he looked at his long fingers he thought about his talent. He felt proud of himself. He knew he could do it. Your unwavering faith inspired him to be the best he can be”.
My advice to you is this. Forget about the boxes and the labels. Ignore the judgments. Your child is fascinating. Your child is a unique and wonderful being who is incredibly special. Give him the tools. Encourage him on his journey. Never lose faith in him. Stand by his side. Teach him as much as you can. Watch in delight as he soars far beyond everyone’s expectations. Everyone’s except yours and all those who joined your belief along the way!
- By Jene Aviram
Sunday, February 25, 2007
It's Been One Heck of a Weekend (I MIss You Bob!)
I don't even know where to begin! I suppose I'll start with Friday....
Friday was one of those days because, well, it was a Friday! It wasn't overwhelmingly wonderful, and it wasn't overwhelmingly terrible. Fridays generally are busy days for me, and this was no exception. I'm not sure if many of you know, but since October when Sandis was given the diagnosis of PDD-NOS, we've been waiting on school evaluations to finalize the diagnosis. See, Sandis scored extremely high on the Asperger's Diagnostic Scale. If his IQ and Adaptive Evaluations were in line with the Asperger's Diagnosis, his diagnosis may have changed from PDD-NOS to Aspergers. Well, a few evaluations faxed later and we have our news, which essentially, is no news. Sandis's diagnosis will not change. He does not fit clinical criteria for Aspergers due to the low score on his Adaptive evaluation.
I don't know how I feel about this. On Friday I was fairly annoyed. I feel like PDD-NOS is an umbrella diagnosis (it is) with no clear clinical guidelines other than having autistic tendencies but not clearly fitting into any of the other clear diagnoses under Pervasive Developmental Disorder. I felt like if I had a more clear diagnosis, then perhaps I would feel like things were more clear. Does that sound crazy? It is, I know. I recognize this, and I'm moving on.
The clinical psychologist told me that Aspergers was in general "worse" than the spectrum disorder Sandis has. This statement offended me on so many levels. First of all, I have trouble imagining Sandis as "worse" or "better" depending on his final diagnosis. Secondly, it doesn't make any sense. Sandis is a child that fits all Asperger clinical guidelines, except for the fact that he has LESS functional life skills than children with that diagnosis have. Phooey.
Bob and I talked, and we decided that NEXT year (read January of 2008) we will take Sandis back to the U of M, but this time not the attention clinic, this time we will take him to the neuropsychology Autism Center and do a full round of neuropsychological evaluations again at that time. Children change, and so can diagnoses after a year of observations and interventions at the school. I personally feel that we went in with very basic information last year, but next year, we will go in with a plethora of information. We already have new information, that I feel they overlooked at the Attention Clinic. Sandis actually has a communicative speech delay. Expressively and Receptively he tests fabulously, but in social communication he is testing at around age 2 level (four standard deviations below the norm for his age).
Ahhh Diabetes. Gracie is doing very well with her increase of Lantus. I am seeing much fewer highs, nothing over 200. She's had a 190 and a 157 post prandial tonight, but those I can certainly live with. She is also waking up under 100 90% of the time, which is fabulous. It makes me sad to pull back that plunger to the one, knowing that only a few months ago I pulled it back only to the 1/2, and it worked for her. For a short time. Better this than keto-acidosis though. Better this slow acceptance for all of us.
Gracie asked me the other day if when she grew up she wouldn't have to take shots anymore. Talk about a glimpse into a three year old's point of view, eh? Her response to me as I told her that no, she would have to take them forever, was pretty disheartening. Tears, pouty lip, and a few more tears. "But I don't want to take shots forever mom!" She found peace with all of this after a few minutes then walked around "When I die I won't have to take shots anymore!" Ahhhhhhhhh.....If only I could find peace in that!
On to Snow. We got SNOW. Not like a little bit of snow but like I'm gonna snow your brains out snow. Want to know the most ironic part of all this snow? This is my last weekend as caretaker, and I am responsible for shoveling that snow. After basically no snow all winter, the LAST weekend before I stop this job, I get the mother load of all storms and snow. Pfffft. I could have done without that.
It is also extremely heavy snow. So I shoveled twice yesterday, and felt a column of pain up my back this morning. I look out the window, well over a foot drifted right over my sidewalk and stairs. haha, I cussed inwardly and did what anyone would do. I ignored it, for basically all day. And then I only shoveled the entry ways and left the sidewalks. It still took over an hour, so don't think I was slacking too hard. Soon after I shovelled they plowed the parking lot, and plowed snow right into my entry way and stairwell. So I shovelled again. Figures eh?
My wonderful Bob (who I have loved and hated alternatingly this weekend) was not able to make it up in part due to the snow. I can't remember the last time I was alone with the kids all weekend. I would love to say I enjoyed it, and there were times with them that I thorougly enjoyed. I'm not feeling all that hot though, my throat hurts and I've been running low grade fevers, so I certainly had my moments where I felt like I just couldn't do it. Bob is such a help on the weekends, with him I retain my sanity. Suffice it to say that I am happy the weekend is over, so I can relax at work!
I think this about covers my weekend, and basically leaves out any cussing I may have been doing so I can preserve my image of sweet mum :) Have a nice week ya'll, and if you are in minnesota, I hope you can get out of your driveway and enjoy the snow!
Friday was one of those days because, well, it was a Friday! It wasn't overwhelmingly wonderful, and it wasn't overwhelmingly terrible. Fridays generally are busy days for me, and this was no exception. I'm not sure if many of you know, but since October when Sandis was given the diagnosis of PDD-NOS, we've been waiting on school evaluations to finalize the diagnosis. See, Sandis scored extremely high on the Asperger's Diagnostic Scale. If his IQ and Adaptive Evaluations were in line with the Asperger's Diagnosis, his diagnosis may have changed from PDD-NOS to Aspergers. Well, a few evaluations faxed later and we have our news, which essentially, is no news. Sandis's diagnosis will not change. He does not fit clinical criteria for Aspergers due to the low score on his Adaptive evaluation.
I don't know how I feel about this. On Friday I was fairly annoyed. I feel like PDD-NOS is an umbrella diagnosis (it is) with no clear clinical guidelines other than having autistic tendencies but not clearly fitting into any of the other clear diagnoses under Pervasive Developmental Disorder. I felt like if I had a more clear diagnosis, then perhaps I would feel like things were more clear. Does that sound crazy? It is, I know. I recognize this, and I'm moving on.
The clinical psychologist told me that Aspergers was in general "worse" than the spectrum disorder Sandis has. This statement offended me on so many levels. First of all, I have trouble imagining Sandis as "worse" or "better" depending on his final diagnosis. Secondly, it doesn't make any sense. Sandis is a child that fits all Asperger clinical guidelines, except for the fact that he has LESS functional life skills than children with that diagnosis have. Phooey.
Bob and I talked, and we decided that NEXT year (read January of 2008) we will take Sandis back to the U of M, but this time not the attention clinic, this time we will take him to the neuropsychology Autism Center and do a full round of neuropsychological evaluations again at that time. Children change, and so can diagnoses after a year of observations and interventions at the school. I personally feel that we went in with very basic information last year, but next year, we will go in with a plethora of information. We already have new information, that I feel they overlooked at the Attention Clinic. Sandis actually has a communicative speech delay. Expressively and Receptively he tests fabulously, but in social communication he is testing at around age 2 level (four standard deviations below the norm for his age).
Ahhh Diabetes. Gracie is doing very well with her increase of Lantus. I am seeing much fewer highs, nothing over 200. She's had a 190 and a 157 post prandial tonight, but those I can certainly live with. She is also waking up under 100 90% of the time, which is fabulous. It makes me sad to pull back that plunger to the one, knowing that only a few months ago I pulled it back only to the 1/2, and it worked for her. For a short time. Better this than keto-acidosis though. Better this slow acceptance for all of us.
Gracie asked me the other day if when she grew up she wouldn't have to take shots anymore. Talk about a glimpse into a three year old's point of view, eh? Her response to me as I told her that no, she would have to take them forever, was pretty disheartening. Tears, pouty lip, and a few more tears. "But I don't want to take shots forever mom!" She found peace with all of this after a few minutes then walked around "When I die I won't have to take shots anymore!" Ahhhhhhhhh.....If only I could find peace in that!
On to Snow. We got SNOW. Not like a little bit of snow but like I'm gonna snow your brains out snow. Want to know the most ironic part of all this snow? This is my last weekend as caretaker, and I am responsible for shoveling that snow. After basically no snow all winter, the LAST weekend before I stop this job, I get the mother load of all storms and snow. Pfffft. I could have done without that.
It is also extremely heavy snow. So I shoveled twice yesterday, and felt a column of pain up my back this morning. I look out the window, well over a foot drifted right over my sidewalk and stairs. haha, I cussed inwardly and did what anyone would do. I ignored it, for basically all day. And then I only shoveled the entry ways and left the sidewalks. It still took over an hour, so don't think I was slacking too hard. Soon after I shovelled they plowed the parking lot, and plowed snow right into my entry way and stairwell. So I shovelled again. Figures eh?
My wonderful Bob (who I have loved and hated alternatingly this weekend) was not able to make it up in part due to the snow. I can't remember the last time I was alone with the kids all weekend. I would love to say I enjoyed it, and there were times with them that I thorougly enjoyed. I'm not feeling all that hot though, my throat hurts and I've been running low grade fevers, so I certainly had my moments where I felt like I just couldn't do it. Bob is such a help on the weekends, with him I retain my sanity. Suffice it to say that I am happy the weekend is over, so I can relax at work!
I think this about covers my weekend, and basically leaves out any cussing I may have been doing so I can preserve my image of sweet mum :) Have a nice week ya'll, and if you are in minnesota, I hope you can get out of your driveway and enjoy the snow!
The Art of Perseveration
It is an art. It is perhaps not an art very well grasped by us neurotypical folk, but nonetheless, it is an art. If you let things go too far, sometimes you find yourself in a perseveration quandary. And, sometimes, you are in a perseveration quandary regardless.
I bought a new movie for the children this weekend. Shark Boy and Lava Girl. Haha, it is the new age never ending story, or something. Good movie, requires 3D glasses, and has kids who are superheros in it. Fabulous.
Do you have any idea how many times we have watched this movie the past two days? (Especially in light of like six feet of heavy wet snow that is immovable). Not only has the movie been watched upwards of six times this weekend, I am also garnering verbal responses from Sandis that are primarily drawn from this media source. Half the time I have no idea what it is he is trying to convey.........Case in Point:
Me: It's time for dinner! Come sit down at the table!
Sandis: Land of milk and cookies? I'm losing my train of thought.....
Me: What?
Sandis: We have to pause the movie! MOmmyyyyyyy!! Pause no stop! We need to pause! MOmmmmmmmy!
Me: What? Land of Milk and cookies? What? Pause? OK, it is still time for dinner. come eat and no we aren't having cookies......
And I leave the exchange slightly annoyed and thoroughly confused. It may be slightly different if Sandis weren't so fabulous at communication with me normally. This is so far off the norm I don't know what to make of it. We went to the store and Sandis literally hopped and re-enacted scenes from this movie the ENTIRE time. Some guy had the audacity to tell me I needed to take care of my kids , and after dealing with persistent hopping and lava girl scenes for an entire hour at Kohl's, I wasn't feeling very gentle. I told him that I didn't need anyone to tell me how to take care of my f****ing kids thank you very much. I can stop Sandis from hopping like I can stop a train with my bare hands.
So now we are back home. Sandis pretended to be lava girl melting the snow while I was shoveling, and now he is glued to the TV (guess what he is watching?), and I'm making dinner. And no, we aren't having milk and cookies for dinner.....But If I can just lure him away from that tv, I'll enjoy listening to Sandis recite his favorite scenes while we chow.....On blue cheese steak.....Sandis can have his perseverations, and me, I'm going to enjoy his innate ability to allow one thing to infiltrate EVERY SINGLE aspect of his life. Until he finds something new he'll love just as much.
Friday, February 23, 2007
This Love
Do you understand what it means to love someone? Do you understand what I mean when I speak of the pain involved with love, the fear involved with love, and the overwhelming joy and excitement involved with love? It is one end, and it is the other, and it is the inbetween.
Oh how I love thee my boy. Oh I how I love thee my peanut. Oh how I love thee my mate. Oh how I love your smile. Oh how I love your dance. Oh how I love your tiny little bottom and your teenie little toes. Oh how I love your curls.
When I reflect on you, your joy, the effect you have upon me, there is so much light and so much joy. You seep into all of me. I see you holding my hand. I feel you tugging my hair. I feel your lips against mine. A thousand times. Forever. For you have that effect upon me.
How many times have I been blessed that I feel love such as this not once, not twice, but thrice? And all at the same time? I am torn three different ways but healed in all directions.
God has truly smiled on me. He has given me gifts like no other. He has given me an eternity in the love I have for each of you. My Sandis. My Gracie. My Bob. My all of you. I love you.
Oh how I love thee my boy. Oh I how I love thee my peanut. Oh how I love thee my mate. Oh how I love your smile. Oh how I love your dance. Oh how I love your tiny little bottom and your teenie little toes. Oh how I love your curls.
When I reflect on you, your joy, the effect you have upon me, there is so much light and so much joy. You seep into all of me. I see you holding my hand. I feel you tugging my hair. I feel your lips against mine. A thousand times. Forever. For you have that effect upon me.
How many times have I been blessed that I feel love such as this not once, not twice, but thrice? And all at the same time? I am torn three different ways but healed in all directions.
God has truly smiled on me. He has given me gifts like no other. He has given me an eternity in the love I have for each of you. My Sandis. My Gracie. My Bob. My all of you. I love you.
Thursday, February 22, 2007
The Paper in Chronic Condition/Disability Management
Keeping people in the loop is tough work. If you think that the day in day out maintenance of a chronic disease is tough, add three million doctors, eight thousand charitable organizations, approximately 220 federal state county and city entities, and your school officials and day care providers and try keeping all of them in the loop. All the time. Progress notes. Diagnoses. New evaluations. Accordian files, notes coming out of my ears, and countless faxes. Disease/illness/disability/chronic condition management and communication is a lot of work, and uses up a hell of a lot of paper.
In my house we have 3 chronic conditions and one childhood disability managed by at least two specialists, three therapists, and one primary care physician, per CHILD. Now take specialist #1. Specialist #1 sees your child, assigns a diagnosis, and establishes a treatment plan. You now have to obtain the medical records for this visit and send them to specialist #2, Therapist #1 #2 & #3, Primary care physician, SSI office, Medicaid office, County social worker office and if there was an evaluation performed where results are available, you should send those to the school case worker and copy his teacher, pertinent specialist at the school, & day care provider (KidStop at the school). It doesn’t stop there. If you are sending this paperwork to anyone that requires this information for some time-sensitive reason, you need to have some sort of CONFIRMATION that they RECEIVED said documents. Ick. Bad. Ick. This also goes in circles. Say the school performs an evaluation? You get the results of the evaluation, send them to specialist #1, specialist #2, primary, therapists, SSI, Medicaid, and county social worker. Say specialist #1 feels that the evaluation results could affect the child’s diagnosis? Well then you head on up to specialist #1 for a doctor’s appointment (far, far away) to be assigned a new, more valid diagnosis. The cycle begins ALL OVER AGAIN. It never ends.
So why am I thinking about paper right now? Well, here’s the deal. Sandis had his IEP meeting this morning. It went fairly well, and when the draft of the IEP is complete I’ll know better how I feel about it. I was sent home with a 12 page document detailing the evaluations performed and their results along with outlining Sandis’s specific deficits and needs. Great information and just the information I have been waiting for. Sandis’s psychologist at the U of M diagnosed Sandis with PDD-NOS but said that upon receipt of his IQ and adaptive evaluations she would revisit the diagnosis to ascertain whether it should in fact be Aspergers. So I have this mountain of paperwork to send to the U of M. I also have a mountain of therapy progress notes to send to her. I also have to send all of this paperwork to SSI for Sandis’s application. Add to that I have to send it to Medicaid for his TEFRA eligibility. It is a mountain of paper, and suddenly I have a lot of letters to write. Cover letters for faxes. Cover letters for mailings. Oh, and thank you letters to everyone and their dog detailing the events in the IEP meeting so I have my own written trail.
Now add Gracie who also has a pending SSI and TEFRA application. (I don’t expect Gracie to get SSI, but I have to apply as a part of the TEFRA application.) I have to obtain all of her medical records since October, all of her progress notes from therapy, and she has to have a physical done by her primary care doctor. After said physical, I must request the medical records to be sent to me so that I may send them on with her TEFRA application. It never ends. I am in a paperwork nightmare. I’m not certain that even getting a file cabinet will help at this point. I’m thinking that perhaps I should hire a secretary (that is willing to work for candy and smiles!)
There has got to be an easier way to make sure that everyone gets what they need. I’m skeptical, but it just seems irrational that all of this would be so time and paper consuming, un-user-friendly, and ridiculous to keep everyone in the loop. Ah well. In my next life I will be the master of the medical records connection. For now, I’ll have to settle for what I have as I limp along trying to meet the needs of the system.
In my house we have 3 chronic conditions and one childhood disability managed by at least two specialists, three therapists, and one primary care physician, per CHILD. Now take specialist #1. Specialist #1 sees your child, assigns a diagnosis, and establishes a treatment plan. You now have to obtain the medical records for this visit and send them to specialist #2, Therapist #1 #2 & #3, Primary care physician, SSI office, Medicaid office, County social worker office and if there was an evaluation performed where results are available, you should send those to the school case worker and copy his teacher, pertinent specialist at the school, & day care provider (KidStop at the school). It doesn’t stop there. If you are sending this paperwork to anyone that requires this information for some time-sensitive reason, you need to have some sort of CONFIRMATION that they RECEIVED said documents. Ick. Bad. Ick. This also goes in circles. Say the school performs an evaluation? You get the results of the evaluation, send them to specialist #1, specialist #2, primary, therapists, SSI, Medicaid, and county social worker. Say specialist #1 feels that the evaluation results could affect the child’s diagnosis? Well then you head on up to specialist #1 for a doctor’s appointment (far, far away) to be assigned a new, more valid diagnosis. The cycle begins ALL OVER AGAIN. It never ends.
So why am I thinking about paper right now? Well, here’s the deal. Sandis had his IEP meeting this morning. It went fairly well, and when the draft of the IEP is complete I’ll know better how I feel about it. I was sent home with a 12 page document detailing the evaluations performed and their results along with outlining Sandis’s specific deficits and needs. Great information and just the information I have been waiting for. Sandis’s psychologist at the U of M diagnosed Sandis with PDD-NOS but said that upon receipt of his IQ and adaptive evaluations she would revisit the diagnosis to ascertain whether it should in fact be Aspergers. So I have this mountain of paperwork to send to the U of M. I also have a mountain of therapy progress notes to send to her. I also have to send all of this paperwork to SSI for Sandis’s application. Add to that I have to send it to Medicaid for his TEFRA eligibility. It is a mountain of paper, and suddenly I have a lot of letters to write. Cover letters for faxes. Cover letters for mailings. Oh, and thank you letters to everyone and their dog detailing the events in the IEP meeting so I have my own written trail.
Now add Gracie who also has a pending SSI and TEFRA application. (I don’t expect Gracie to get SSI, but I have to apply as a part of the TEFRA application.) I have to obtain all of her medical records since October, all of her progress notes from therapy, and she has to have a physical done by her primary care doctor. After said physical, I must request the medical records to be sent to me so that I may send them on with her TEFRA application. It never ends. I am in a paperwork nightmare. I’m not certain that even getting a file cabinet will help at this point. I’m thinking that perhaps I should hire a secretary (that is willing to work for candy and smiles!)
There has got to be an easier way to make sure that everyone gets what they need. I’m skeptical, but it just seems irrational that all of this would be so time and paper consuming, un-user-friendly, and ridiculous to keep everyone in the loop. Ah well. In my next life I will be the master of the medical records connection. For now, I’ll have to settle for what I have as I limp along trying to meet the needs of the system.
Wednesday, February 21, 2007
Jumping Up On My Soap Box
Today is going to be a long day. Not a long bad day, but a long day nonetheless. I’m working until 3:12pm and then I’m heading to pick up the boy and then we head together to our therapy place. Today is my OT evaluation for my hand. I’ve been in better straits where my hand is concerned. The pain no longer ends at my elbow, it curtails at my shoulder. Drag. I tried to open a child proof bottle this morning with Sandis’s antibiotics in it and I couldn’t get it open. My lovely hand. It is amazing how many things we use our arms and hands for in daily life. When you lack that basic strength and ability, you suddenly begin to realize how important it is. I imagine that is true for a lot of things.
Sandis is on week two of speech therapy. He has occupational therapy first. Occupational therapy was the therapy I was most excited about for Sandis, and it still is. I see the most improvement with my son’s challenging behaviors with a regular sensory diet, and that is awesome for everyone involved. Last week Sandis got this new thing called a chewy tube. I really need to take a picture of it and show you as it has been amazing for Sandis. Sandis’s chewing, sucking, and mouthing objects has been one of those things we’ve been working on helping him stop, but it never fails that he stops chewing and sucking on one thing and just moves onto chewing and sucking something else. He obviously feels a need to do this and rather than butting heads with him on it, I’m at the point where I want to just let him have something suitable to chew. I remind Sandis about chewing on the chewy tube a lot, but he also initiates chewing on it. He’s taken to gnawing away on it at the end of the day as we sit around after dinner doing our choice time, reading books, or watching movies. He gnaws and gnaws and gnaws. The awesome thing is his thumb stays out of his mouth and so do his toys and his clothes. He gets to chew which is soothing for him, and we save his thumbs and his clothes. The school isn’t ready to let him use a chewy tube just yet. They say he can chew on a pen or have a hand fidget toy. That is well and good, but when Sandis needs to chew, he will chew, whether or not he has the stupid hand fidget toy or not. Actually, he will chew on the hand fidget toy, which is why they have decreased his options for hand fidgets because he has popped more than one. Will they never learn? Sometimes the most obvious options for helping are the last ones chosen.
We have our Family, Friends, and Fun night tonight. Free dinner, free child care, and an hour and a half gabbing with other parents who have special needs kids. This group, although adding one more thing to my super stupid crazy schedule, rocks. I’ve thought about going to diabetes support groups in the past, but I think that this support group meets my needs more than any diabetes group (with primarily type 2 diabetics) ever could. There are so many other parents with children that are Sandis’s age that are on the spectrum. There are also parents of kids with physical disabilities. They all “get it.” They laugh and they cry and they understand how important it is to not be alone. I hope to one day give back to other parents with special needs kids, especially when my life slows down a little. I know it will one day, and one day I will be a veteran of the IEP process, a veteran of obtaining autism diagnoses, and just in general a veteran of the special needs parenting arena. It’s a huge thing us parents take on, and when suddenly your life is slammed with something you never hoped for and never expected, the twists get a little tighter and the visibility goes down just a bit more. We all need navigators, and were it not for the initial contacts I was able to make with parents and educators in the special needs world, I would not be where I am with both Sandis and Gracie right now.
It ticks me off that you go to the doctor, you go through the entire evaluation process, and then you are handed this massive report which says your child has autism. It changes your life forever, yet it has few recommendations for follow up care. You are on your own buddy, on to my next evaluation. Good luck and well, Good luck!
Parents NEED eachother. It is scary. How do you make sure that your child is getting what they need during school and day care? How do you deal with all those extra appointments? What are your rights concerning employment, child care, school? What additional services from city, county, state, and federal programs do you now qualify for? What additional charitable organization programs can you now qualify for? How do I get help? How do I get babysitting? How do I get a break? How do I pay all these medical bills? How do I meet other parents like me?
These are questions, real questions, and they need to be answered. It’s amazing how many different places us parents need to go to get these answers! Not easy! So I’ve decided, if I’m going to get on a soap box it won’t be a diabetes soap box. It also won’t be an autism soap box. It is going to be a special needs kids soap box. Because families with special needs kids have special needs. And there is not one place out there that provides what they do need. That is why at this time next year, I’m going to start reaching out to other families. I’m not sure how yet, but I have a few ideas. I just may have found my calling.
Sandis is on week two of speech therapy. He has occupational therapy first. Occupational therapy was the therapy I was most excited about for Sandis, and it still is. I see the most improvement with my son’s challenging behaviors with a regular sensory diet, and that is awesome for everyone involved. Last week Sandis got this new thing called a chewy tube. I really need to take a picture of it and show you as it has been amazing for Sandis. Sandis’s chewing, sucking, and mouthing objects has been one of those things we’ve been working on helping him stop, but it never fails that he stops chewing and sucking on one thing and just moves onto chewing and sucking something else. He obviously feels a need to do this and rather than butting heads with him on it, I’m at the point where I want to just let him have something suitable to chew. I remind Sandis about chewing on the chewy tube a lot, but he also initiates chewing on it. He’s taken to gnawing away on it at the end of the day as we sit around after dinner doing our choice time, reading books, or watching movies. He gnaws and gnaws and gnaws. The awesome thing is his thumb stays out of his mouth and so do his toys and his clothes. He gets to chew which is soothing for him, and we save his thumbs and his clothes. The school isn’t ready to let him use a chewy tube just yet. They say he can chew on a pen or have a hand fidget toy. That is well and good, but when Sandis needs to chew, he will chew, whether or not he has the stupid hand fidget toy or not. Actually, he will chew on the hand fidget toy, which is why they have decreased his options for hand fidgets because he has popped more than one. Will they never learn? Sometimes the most obvious options for helping are the last ones chosen.
We have our Family, Friends, and Fun night tonight. Free dinner, free child care, and an hour and a half gabbing with other parents who have special needs kids. This group, although adding one more thing to my super stupid crazy schedule, rocks. I’ve thought about going to diabetes support groups in the past, but I think that this support group meets my needs more than any diabetes group (with primarily type 2 diabetics) ever could. There are so many other parents with children that are Sandis’s age that are on the spectrum. There are also parents of kids with physical disabilities. They all “get it.” They laugh and they cry and they understand how important it is to not be alone. I hope to one day give back to other parents with special needs kids, especially when my life slows down a little. I know it will one day, and one day I will be a veteran of the IEP process, a veteran of obtaining autism diagnoses, and just in general a veteran of the special needs parenting arena. It’s a huge thing us parents take on, and when suddenly your life is slammed with something you never hoped for and never expected, the twists get a little tighter and the visibility goes down just a bit more. We all need navigators, and were it not for the initial contacts I was able to make with parents and educators in the special needs world, I would not be where I am with both Sandis and Gracie right now.
It ticks me off that you go to the doctor, you go through the entire evaluation process, and then you are handed this massive report which says your child has autism. It changes your life forever, yet it has few recommendations for follow up care. You are on your own buddy, on to my next evaluation. Good luck and well, Good luck!
Parents NEED eachother. It is scary. How do you make sure that your child is getting what they need during school and day care? How do you deal with all those extra appointments? What are your rights concerning employment, child care, school? What additional services from city, county, state, and federal programs do you now qualify for? What additional charitable organization programs can you now qualify for? How do I get help? How do I get babysitting? How do I get a break? How do I pay all these medical bills? How do I meet other parents like me?
These are questions, real questions, and they need to be answered. It’s amazing how many different places us parents need to go to get these answers! Not easy! So I’ve decided, if I’m going to get on a soap box it won’t be a diabetes soap box. It also won’t be an autism soap box. It is going to be a special needs kids soap box. Because families with special needs kids have special needs. And there is not one place out there that provides what they do need. That is why at this time next year, I’m going to start reaching out to other families. I’m not sure how yet, but I have a few ideas. I just may have found my calling.
Tuesday, February 20, 2007
The Invasion of the Adenoids
Sandis has been icky lately. Actually he has been icky all winter, since September. Not icky as in naughty boy, but icky as in sicky. He has a goopy nose, an icky cough, and a fever that when rises, warrants a doctor appointment. He’s been on antibiotics off and on for the past few months with nothing ever really clearing up the ick. Oh, it’ll clear up during the ten days on antibiotics, and then come back with a vengeance a few days after he is done. The fever takes a little longer to return, thankfully, which allows me to actually work on occasion.
Sandis’s speech therapist mentioned to me in his initial evaluation in December that Sandis had large tonsils. I thought nothing of it. So he has large tonsils right? Big deal, if it ain’t killin him don’t change a thing. Seriously. Don’t. Change. A. Thing. You know, because change is like a big bad bear that I totally can deal with less of lately.
When I got Sandis back in to the speech therapist last week she made a point of bringing up his apparently freakishly large tonsils, AGAIN. She even got out a flashlight to SHOW me. Ya, I guess she was serious about being concerned about the large tonsils thing eh? Sure enough, he has monster tonsils, monster in the sense that his throats looks like it closes when they expand. Ahhh! What bliss is the large tonsils? Let me count the ways they can make my day!
These past few days, since a puking incident on Friday night, Sandis has been nursing a low grade fever (thankfully responsive to ibuprofen). I figured it was time to re-up the antibiotics, but figured this time I would get him into his primary to discuss the freakishly huge tonsils with her in the same breath as his snotty nose icky cough stuff. Well, following a fairly painless X-ray to check out his adenoids, which also revealed themselves to be freakishly gigantic, we left with a referral to an ENT. A referral to an ENT to discuss adenoid removal. Pfffffffffffft. Phooey on you adenoids. I’ve had ENOUGH!
So on yet another journey we will venture in these next few weeks. Where it leads us, no one knows, but I’m betting that this journey isn’t specific to autism OR diabetes. And frankly, um, I have no freakin idea how I feel about that.
Sandis’s speech therapist mentioned to me in his initial evaluation in December that Sandis had large tonsils. I thought nothing of it. So he has large tonsils right? Big deal, if it ain’t killin him don’t change a thing. Seriously. Don’t. Change. A. Thing. You know, because change is like a big bad bear that I totally can deal with less of lately.
When I got Sandis back in to the speech therapist last week she made a point of bringing up his apparently freakishly large tonsils, AGAIN. She even got out a flashlight to SHOW me. Ya, I guess she was serious about being concerned about the large tonsils thing eh? Sure enough, he has monster tonsils, monster in the sense that his throats looks like it closes when they expand. Ahhh! What bliss is the large tonsils? Let me count the ways they can make my day!
These past few days, since a puking incident on Friday night, Sandis has been nursing a low grade fever (thankfully responsive to ibuprofen). I figured it was time to re-up the antibiotics, but figured this time I would get him into his primary to discuss the freakishly huge tonsils with her in the same breath as his snotty nose icky cough stuff. Well, following a fairly painless X-ray to check out his adenoids, which also revealed themselves to be freakishly gigantic, we left with a referral to an ENT. A referral to an ENT to discuss adenoid removal. Pfffffffffffft. Phooey on you adenoids. I’ve had ENOUGH!
So on yet another journey we will venture in these next few weeks. Where it leads us, no one knows, but I’m betting that this journey isn’t specific to autism OR diabetes. And frankly, um, I have no freakin idea how I feel about that.
Monday, February 19, 2007
The Reason for My Roar
I wish I were not a weak human being. I wish I were a strong human being with endless reserves of patience, love, and compassion. I wish I could take all of your quirks, all of them, and embrace them as they are part of you. A part of me, as you are a part of me, and all that is you, is a part of me.
I hate hating when you don’t respond to me. I hate to see your eyes glazed. I hate to see you gazing off, at what no one knows. I hate not being able to pierce your world. I hate knowing the why, but still not being able to control my anger. I wish you would look at me when I talked to you. I wish you were “here” with me.
It isn’t that there are not times where you are so engaging, so loving, so involved with me. It is that I don’t know how to handle the times that you aren’t. My life doesn’t stop because you can’t engage. I don’t want to be angry with you, ever. I want to let you sit. I want to let you think. I want to let you be you. And it just seems that sometimes I can’t. Sometimes I roar. It hurts me so much to hear myself.
This is not just autism. This is not just I the shoulds, needs, and coulds. This is me. This is you. And even though I know the why…..I still haven’t figured out the how……
How do I break into your world? How do you break into mine? How do we meet in the middle? How do I slow down? How can you speed up (and slow down, depending on the day)?
When will everything just be okay? Or more importantly, how can I let everything be okay?
I hate hating when you don’t respond to me. I hate to see your eyes glazed. I hate to see you gazing off, at what no one knows. I hate not being able to pierce your world. I hate knowing the why, but still not being able to control my anger. I wish you would look at me when I talked to you. I wish you were “here” with me.
It isn’t that there are not times where you are so engaging, so loving, so involved with me. It is that I don’t know how to handle the times that you aren’t. My life doesn’t stop because you can’t engage. I don’t want to be angry with you, ever. I want to let you sit. I want to let you think. I want to let you be you. And it just seems that sometimes I can’t. Sometimes I roar. It hurts me so much to hear myself.
This is not just autism. This is not just I the shoulds, needs, and coulds. This is me. This is you. And even though I know the why…..I still haven’t figured out the how……
How do I break into your world? How do you break into mine? How do we meet in the middle? How do I slow down? How can you speed up (and slow down, depending on the day)?
When will everything just be okay? Or more importantly, how can I let everything be okay?
Sunday, February 18, 2007
Retail Therapy
Ahhhhhhhhh. The joys of money. I mean, not to besmirch the joys of love and family, but there is just SOMETHING that is so damn FULFILLING about retail therapy (spending said money).
The song my coworkers and I were singing this past Friday as we finished up the weekly (daily) grind of paid by the hours was this: "B is for Bonus!" And was it ever. Last year I didn't get a bonus as I wasn't in the company long enough. This year I was 700 dollars deep into bonus land. Holey moley is that cool eh? Just the week before I hadn't even managed to pull 27 hours (26.9) because of diabetes and what? oh ya, diabetes in my little peanut (read endocrine appointment 2 hours away one day and ketones from the flu the other). It was so nice to walk into bonusland after a week like that.
So what did I do? I practised some of that retail therapy I've noted above. I bought myself some cool things, and I spent even MORE money on those I love. Why? Because it feels good.
Gracie has been in some dire need of shoes. With her braces I haven't found any pairs of dress shoes that will do with them, but we DID find two uber-cool pairs of skechers that rock ANY competing pair of dress shoes (bye bye black patent). I'm psyched for my shoe loving peanut because although we weren't able to do the dressy stuff (and won't for who knows how long unless we happenstance on a miracle in shoe-ness) we were able to get her some nice shoes that fit well over her braces and will be comfortable. A plus is they look cool!
We went to the gallows at JC Penney (or as Gracie says Gracie Pennie) and hit the sales racks. Bob got a winter jacket that seriously missed the market in Saint Cloud, but hit his retro 70's spot just right for around 10 bucks. I also bought him a couple of tees and a sweater. I bought a pair of jeans (in a size 14 due to my recent gluttonous ways), 3 blouses, and two pairs of super sexy heels that will bring my 5'6 frame to around 5'9 (so much better for my BMI!). Sandis cashed in with a Goonies dvd and a pair of super hot jeans (boot cut for my boy!).
So why do I feel the need to recant my purchases to all of you? I am extending my retail therapy, that is why. And believe you me, I will be reliving it every day this week with my awesome heels (bought for a ridiculous 4.97).
On a different note, it was Sandis's day at church today. I prepared by doing brushing and joint compressions before. I also brought the brush, his new chewy tube, and put together a schedule on a white board that we brought with. He was so calm for so much of it, it was amazing. A few of the kids were curious about Sandis's chewy tube and the white board. After explaining the chewy tube, one kid (a super cute 5th grader "NT") exclaimed what a good idea that is and how much he would benefit from one since he chews on "EVERYTHING!" It was awesome to get positive feedback from kids on that, as the district autism coordinator at Sandis's school had said that the chewy tubes can invite teasing from other kids. Whatever. This made me feel positive about feedback from other kids. Kids can be mean about anything. We had some stresses during sunday school but we made it with a break, a walk, and some brushing in the middle. We also made it through church until after the children's sermon!
I've been helping bob with a special task of his this weekend, inputting a few hours for boookkeeping here and there this weekend, and in return he is helping me around the house. It is awesome for him to help me, and for me to help him.
I'm still enjoying my retail therapy, numb and joyous all over. Too bad the shopping feeling doesn't last forever, but it was nice!
The song my coworkers and I were singing this past Friday as we finished up the weekly (daily) grind of paid by the hours was this: "B is for Bonus!" And was it ever. Last year I didn't get a bonus as I wasn't in the company long enough. This year I was 700 dollars deep into bonus land. Holey moley is that cool eh? Just the week before I hadn't even managed to pull 27 hours (26.9) because of diabetes and what? oh ya, diabetes in my little peanut (read endocrine appointment 2 hours away one day and ketones from the flu the other). It was so nice to walk into bonusland after a week like that.
So what did I do? I practised some of that retail therapy I've noted above. I bought myself some cool things, and I spent even MORE money on those I love. Why? Because it feels good.
Gracie has been in some dire need of shoes. With her braces I haven't found any pairs of dress shoes that will do with them, but we DID find two uber-cool pairs of skechers that rock ANY competing pair of dress shoes (bye bye black patent). I'm psyched for my shoe loving peanut because although we weren't able to do the dressy stuff (and won't for who knows how long unless we happenstance on a miracle in shoe-ness) we were able to get her some nice shoes that fit well over her braces and will be comfortable. A plus is they look cool!
We went to the gallows at JC Penney (or as Gracie says Gracie Pennie) and hit the sales racks. Bob got a winter jacket that seriously missed the market in Saint Cloud, but hit his retro 70's spot just right for around 10 bucks. I also bought him a couple of tees and a sweater. I bought a pair of jeans (in a size 14 due to my recent gluttonous ways), 3 blouses, and two pairs of super sexy heels that will bring my 5'6 frame to around 5'9 (so much better for my BMI!). Sandis cashed in with a Goonies dvd and a pair of super hot jeans (boot cut for my boy!).
So why do I feel the need to recant my purchases to all of you? I am extending my retail therapy, that is why. And believe you me, I will be reliving it every day this week with my awesome heels (bought for a ridiculous 4.97).
On a different note, it was Sandis's day at church today. I prepared by doing brushing and joint compressions before. I also brought the brush, his new chewy tube, and put together a schedule on a white board that we brought with. He was so calm for so much of it, it was amazing. A few of the kids were curious about Sandis's chewy tube and the white board. After explaining the chewy tube, one kid (a super cute 5th grader "NT") exclaimed what a good idea that is and how much he would benefit from one since he chews on "EVERYTHING!" It was awesome to get positive feedback from kids on that, as the district autism coordinator at Sandis's school had said that the chewy tubes can invite teasing from other kids. Whatever. This made me feel positive about feedback from other kids. Kids can be mean about anything. We had some stresses during sunday school but we made it with a break, a walk, and some brushing in the middle. We also made it through church until after the children's sermon!
I've been helping bob with a special task of his this weekend, inputting a few hours for boookkeeping here and there this weekend, and in return he is helping me around the house. It is awesome for him to help me, and for me to help him.
I'm still enjoying my retail therapy, numb and joyous all over. Too bad the shopping feeling doesn't last forever, but it was nice!
Thursday, February 15, 2007
A Case of the Neuropathies
That’s right. I have a case of the neuropathy bug. Want to know the most intriguing bit about it? It is not diabetes related. Oh no. This neuropathy is of the work-related variety. Fun stuff that work related variety of neuropathy!
Yesterday I was diagnosed with ulnar neuropathy. If you aren’t familiar with this particular type of neuropathy, don’t feel bad, I wasn’t either until yesterday. Seeing as how I so obviously set the standard for acquired medical knowledge in the average joe (guffaw….), this is not something you are expected to have in your medical knowledge arsenal unless you or your significant other is directly affected by it.
I’ve been having quite a bit of pain in my hand, specifically weakness and pain in my fourth and fifth fingers. All of the sudden on Monday afternoon, I realized that despite repeated attempts, opening a jar of peanut butter with my right hand was damn near impossible. Also, gripping the steering wheel sent bouts of pain up to my elbow, and picking up my daughter is not to be advised as I will more than likely drop her. Concerned, I went immediately to my direct superviser which resulted in a doctor’s appointment the following morning.
So, as a modicum of treatment, I will be receiving Occupational Therapy for my hand. Ah ha! I will be joining my Sandis and my Gracie in the realms of OT. How funny is that? Our habilitation center must just love my family of needs.
I’ll keep you tuned in as to how my hand progresses. In the meantime, HR at work here is all in a tizzy trying to get my work station figured out so it is less injurious to my person. Noble goals. Noble goals.
Yesterday I was diagnosed with ulnar neuropathy. If you aren’t familiar with this particular type of neuropathy, don’t feel bad, I wasn’t either until yesterday. Seeing as how I so obviously set the standard for acquired medical knowledge in the average joe (guffaw….), this is not something you are expected to have in your medical knowledge arsenal unless you or your significant other is directly affected by it.
I’ve been having quite a bit of pain in my hand, specifically weakness and pain in my fourth and fifth fingers. All of the sudden on Monday afternoon, I realized that despite repeated attempts, opening a jar of peanut butter with my right hand was damn near impossible. Also, gripping the steering wheel sent bouts of pain up to my elbow, and picking up my daughter is not to be advised as I will more than likely drop her. Concerned, I went immediately to my direct superviser which resulted in a doctor’s appointment the following morning.
So, as a modicum of treatment, I will be receiving Occupational Therapy for my hand. Ah ha! I will be joining my Sandis and my Gracie in the realms of OT. How funny is that? Our habilitation center must just love my family of needs.
I’ll keep you tuned in as to how my hand progresses. In the meantime, HR at work here is all in a tizzy trying to get my work station figured out so it is less injurious to my person. Noble goals. Noble goals.
Tuesday, February 13, 2007
One Crazy Day
Yesterday couldn’t have been any more exhausting. Well it could have, but we won’t think about that. I prefer the sensationalism of supreme exhaustion. It gets my point across better.
Last week I turned in my kids’ TEFRA applications. TEFRA is Medicaid disability in Minnesota which is offered regardless of parent income to children who qualify (qualification is determined by a State Medical Review Team). Recently my children had lost Medicaid coverage (based on family income) so I was in a hurry to apply for this coverage as I believe both children should qualify. Yesterday I received a call from my new financial worker. It turns out that my previous financial worker made some sort of DIRE DIRE error (dire because it could have cost me oodles of cash) and I actually DO qualify for Medicaid based on my income, for the children only. I fell under their monthly income ceiling amount by around 200 dollars.
I’m not sure that even if I perseverated on this subject for the next three days I could adequately describe the absolute coolness of this. I’ve been hoping for the TEFRA Medicaid coverage so I can apply for PCA services for Sandis. I’m not sure how many hours we’ll qualify for as Sandis is extremely high functioning, but the fact is that as the demands grow in regards to home OT programming and doctor’s appointments, I just don’t have enough hands/time/daylight/stamina/sanity to do EVERYTHING recommended. I am running out of time to teach Sandis basic life skills which bums me right out. I am trying so hard to fit in doctor’s appointments and therapies that a whole bunch of stuff is getting lost in the shuffle, and seriously, even if I only get five hours a week (is that even reasonable to expect?) I am banking huge on OT home program maintenance and doctor appointment transportation with a PCA. HUGE. So I’m anxious to get this process rolling, and it could only get started with straight Medicaid. Which we now have. Relief is on the horizon! There IS a horizon! This also means that Sandis can start speech therapy focusing on social skills (that Blue Cross doesn’t cover with a diagnosis of autism), the only area he has major deficits in speech (you know the pragmatics of things.)
Now add to the equation that having Medicaid for the kids cuts out ALL of their copays, percentages, and deductibles, and I’m saving a boatload. Which is good, because without job #2(sayonara sister), I don’t have any portion of that boatload!
I was having a fairly happy day enjoying the relief having Medicaid allows. On the way out of work I left Bob a happy message asking him to call me back so I can tell him my good news of the day. As I’m walking to my car, I notice that my passenger door is ajar. Hmmmmm. That’s weird. I think that Sandis must not have shut it tight. As I get closer to the car, I notice that the passenger seat is so far back that if you were in the seat, you would not be sitting you would be lying down. Even weirder. There is a sinking feeling in my chest as I get up to my car, close enough to see through the window. Stereo. Gone. Center Console. Gone. Tore up. Broken. Big Gaping Hole In My Car. Assholes.
My phone rings, and it is Bob, calling me back to get the good news. I snap back with stereo thievery details, and he is confused. He thought I had good news! Haha, such is life sometimes eh? Big bad nasty hole in my car, Medicaid, and no more music (thank God we can make our own).
The first thing I do upon arriving home is check my mail. Well, what did I get in the mail yesterday but an order of child support from Gracie’s father in the amount of $328 per month. I don’t actually ever expect to see that money, but if I do, man if I do…….What a load that would ease.
So you know what? I had two really awesome things happen yesterday. And that rocks! And as far as the stereo thief is concerned…..Well, nevermind about that. It isn’t possible to say anything nice about that whole thing.
Last week I turned in my kids’ TEFRA applications. TEFRA is Medicaid disability in Minnesota which is offered regardless of parent income to children who qualify (qualification is determined by a State Medical Review Team). Recently my children had lost Medicaid coverage (based on family income) so I was in a hurry to apply for this coverage as I believe both children should qualify. Yesterday I received a call from my new financial worker. It turns out that my previous financial worker made some sort of DIRE DIRE error (dire because it could have cost me oodles of cash) and I actually DO qualify for Medicaid based on my income, for the children only. I fell under their monthly income ceiling amount by around 200 dollars.
I’m not sure that even if I perseverated on this subject for the next three days I could adequately describe the absolute coolness of this. I’ve been hoping for the TEFRA Medicaid coverage so I can apply for PCA services for Sandis. I’m not sure how many hours we’ll qualify for as Sandis is extremely high functioning, but the fact is that as the demands grow in regards to home OT programming and doctor’s appointments, I just don’t have enough hands/time/daylight/stamina/sanity to do EVERYTHING recommended. I am running out of time to teach Sandis basic life skills which bums me right out. I am trying so hard to fit in doctor’s appointments and therapies that a whole bunch of stuff is getting lost in the shuffle, and seriously, even if I only get five hours a week (is that even reasonable to expect?) I am banking huge on OT home program maintenance and doctor appointment transportation with a PCA. HUGE. So I’m anxious to get this process rolling, and it could only get started with straight Medicaid. Which we now have. Relief is on the horizon! There IS a horizon! This also means that Sandis can start speech therapy focusing on social skills (that Blue Cross doesn’t cover with a diagnosis of autism), the only area he has major deficits in speech (you know the pragmatics of things.)
Now add to the equation that having Medicaid for the kids cuts out ALL of their copays, percentages, and deductibles, and I’m saving a boatload. Which is good, because without job #2(sayonara sister), I don’t have any portion of that boatload!
I was having a fairly happy day enjoying the relief having Medicaid allows. On the way out of work I left Bob a happy message asking him to call me back so I can tell him my good news of the day. As I’m walking to my car, I notice that my passenger door is ajar. Hmmmmm. That’s weird. I think that Sandis must not have shut it tight. As I get closer to the car, I notice that the passenger seat is so far back that if you were in the seat, you would not be sitting you would be lying down. Even weirder. There is a sinking feeling in my chest as I get up to my car, close enough to see through the window. Stereo. Gone. Center Console. Gone. Tore up. Broken. Big Gaping Hole In My Car. Assholes.
My phone rings, and it is Bob, calling me back to get the good news. I snap back with stereo thievery details, and he is confused. He thought I had good news! Haha, such is life sometimes eh? Big bad nasty hole in my car, Medicaid, and no more music (thank God we can make our own).
The first thing I do upon arriving home is check my mail. Well, what did I get in the mail yesterday but an order of child support from Gracie’s father in the amount of $328 per month. I don’t actually ever expect to see that money, but if I do, man if I do…….What a load that would ease.
So you know what? I had two really awesome things happen yesterday. And that rocks! And as far as the stereo thief is concerned…..Well, nevermind about that. It isn’t possible to say anything nice about that whole thing.
Monday, February 12, 2007
One Day At A Time.
And so we move forward, and there is light. There is light reflected in our tears. There is light reflected in our smiles, our eyes, our everything. It glances off our skin, our clothes, our hearts, our minds…. infiltrating everything…..where we go, where we have been, and what our future holds. One Day At A Time. A lifetime of tomorrows. A lifetime in today.
Can I count the blessings that today does hold? Shall I count the kisses I am so lucky to have? I can not. I must. For every day I question that we are provided for, I am surprised. I am sober in my reception of each gift of time, each gift of help, each gift of service…..Each gift a little more of life. We share this, and it will not last forever. One day this too will end. My children will grow and they will leave, returns only visits.
In my melancholy, I must remember, this too will pass. This too will pass. And what shall assume melancholy’s position but blessings? Tears are the passage of time. I allow the time to pass, and embrace whatever shall happen next. I am blessed. I am loved.
I am oh so very very lucky.
Can I count the blessings that today does hold? Shall I count the kisses I am so lucky to have? I can not. I must. For every day I question that we are provided for, I am surprised. I am sober in my reception of each gift of time, each gift of help, each gift of service…..Each gift a little more of life. We share this, and it will not last forever. One day this too will end. My children will grow and they will leave, returns only visits.
In my melancholy, I must remember, this too will pass. This too will pass. And what shall assume melancholy’s position but blessings? Tears are the passage of time. I allow the time to pass, and embrace whatever shall happen next. I am blessed. I am loved.
I am oh so very very lucky.
Sunday, February 11, 2007
Playing with Guns
My boys. Ahhhhhhhhhhh......my boys! Although I did not participate in the actual gun play (there were only two) I was witness to the wonderful spectacle.
Here they are getting ready with their guns....Checking out their warrior style in the bathroom mirror....
Here is Sandis, waiting for his human prey (Bob)
Bob isn't quite as inconspicuous
Bob on the run
The chaos that ensued
And finally, Gracie having fun with her ponies amidst all the violence.....
Such is life.....We all have to rest at some point....
Here they are getting ready with their guns....Checking out their warrior style in the bathroom mirror....
Here is Sandis, waiting for his human prey (Bob)
Bob isn't quite as inconspicuous
Bob on the run
The chaos that ensued
And finally, Gracie having fun with her ponies amidst all the violence.....
Such is life.....We all have to rest at some point....
Saturday, February 10, 2007
Overwhelmed
Sometimes life just seems so fucking hard. I don’t know where I am going to find the energy to keep doing everything. I keep looking for the hidden break. I keep expecting things to ease up, until one day, exhausted from another day of always being one or two steps behind in EVERYTHING, it hits me…..It will NEVER get better. This is my life, one day at a time, everything all at once, for the REST of my life. And not only that, the pressures will only increase. The expectations will only get higher.
Sandis gets sent home every month with a reading worksheet. Each time you spend 20 or more minutes reading with Sandis you initial one of the THIRTY stars. Last month, I sent it in incomplete. I missed five of the stars. I do what I can. Sandis’s teacher sent it back with big, bad, bold letters scrawled on it “YOU NEED TO COMPLETE!!!!” I thought about completing it, but realized that I would never finish February’s stars if I tried to complete Januarys. So I threw it away. Whatever.
I realized today, while I sat in my car waiting for my coworker to get there so I could go inside and work, that perhaps I feel this way because I start my period in six days. I always get wired up right before my period. Anxious. Raw. Feeling like a failure.
When am I supposed to do everything? Really? I have so many things I need to do so my children grow up into wonderful adults (or rather continue to live as children in some cases) that I have no time to cook, clean, iron, launder. My house is falling apart as I’m running from one appointment to the next. My job, (haha, job)…..I worked 22.9 hours last week. Need I say more on that? And then, my relationship with Bob. I am so fucking overwhelmed that EVERYTHING he does is rubbing me the wrong way. There is no way on earth he can ever understand how I’m feeling. I try to explain, but it doesn’t change how I feel.
I feel like I can’t be overwhelmed. I don’t have time. I feel like I want to give up. I feel like I will never have help. I feel like even if I ask for help I’ll never get it. Even the respite seems too far away, seeing as how I have no clue when I can actually use it, or even how to use it. And once I get the respite, I’ll probably want to use the time to clean the house.
I need to focus more on my blessings and my gratuity. I have been blessed with two wonderful children. Being their sole provider, advocate, care attendant, nurse, mommy, love, their EVERYTHING has me totally running on empty. How can I be a good mum when I feel like this? How can I be a good mum when their antics have me wanting to scream rather than snuggle?
Bob keeps mentioning that I don’t have fun anymore. I don’t even know what fun IS anymore. I wouldn’t know what to do if I had the time to fit in fun among my mile long list of to-do’s. I don’t know what to say to him not thinking I know how to have fun. All of it makes me want to weep, to be sorrowful and mopey. I am only equipped with so much. I can only do so much. And how do I communicate to everyone that I have too much on my plate?
I just so wish I could give the diabetes back. I wish I could trade in her legs for a better pair. I want her to be healthy. I don’t want to know everything I know. I didn’t ask for this. I need to feel sorry for myself. I need to cry over lost expectations. It has only been a few months and it is all still so hard and I don’t know how to make it different.
There is an immense physical pain that is a result of my grief. It grips my chest, my throat, my teeth, my temples. Have you ever felt this? The onslaught of your emotions as a physical sensation?
This too will pass. It just has to.
Sandis gets sent home every month with a reading worksheet. Each time you spend 20 or more minutes reading with Sandis you initial one of the THIRTY stars. Last month, I sent it in incomplete. I missed five of the stars. I do what I can. Sandis’s teacher sent it back with big, bad, bold letters scrawled on it “YOU NEED TO COMPLETE!!!!” I thought about completing it, but realized that I would never finish February’s stars if I tried to complete Januarys. So I threw it away. Whatever.
I realized today, while I sat in my car waiting for my coworker to get there so I could go inside and work, that perhaps I feel this way because I start my period in six days. I always get wired up right before my period. Anxious. Raw. Feeling like a failure.
When am I supposed to do everything? Really? I have so many things I need to do so my children grow up into wonderful adults (or rather continue to live as children in some cases) that I have no time to cook, clean, iron, launder. My house is falling apart as I’m running from one appointment to the next. My job, (haha, job)…..I worked 22.9 hours last week. Need I say more on that? And then, my relationship with Bob. I am so fucking overwhelmed that EVERYTHING he does is rubbing me the wrong way. There is no way on earth he can ever understand how I’m feeling. I try to explain, but it doesn’t change how I feel.
I feel like I can’t be overwhelmed. I don’t have time. I feel like I want to give up. I feel like I will never have help. I feel like even if I ask for help I’ll never get it. Even the respite seems too far away, seeing as how I have no clue when I can actually use it, or even how to use it. And once I get the respite, I’ll probably want to use the time to clean the house.
I need to focus more on my blessings and my gratuity. I have been blessed with two wonderful children. Being their sole provider, advocate, care attendant, nurse, mommy, love, their EVERYTHING has me totally running on empty. How can I be a good mum when I feel like this? How can I be a good mum when their antics have me wanting to scream rather than snuggle?
Bob keeps mentioning that I don’t have fun anymore. I don’t even know what fun IS anymore. I wouldn’t know what to do if I had the time to fit in fun among my mile long list of to-do’s. I don’t know what to say to him not thinking I know how to have fun. All of it makes me want to weep, to be sorrowful and mopey. I am only equipped with so much. I can only do so much. And how do I communicate to everyone that I have too much on my plate?
I just so wish I could give the diabetes back. I wish I could trade in her legs for a better pair. I want her to be healthy. I don’t want to know everything I know. I didn’t ask for this. I need to feel sorry for myself. I need to cry over lost expectations. It has only been a few months and it is all still so hard and I don’t know how to make it different.
There is an immense physical pain that is a result of my grief. It grips my chest, my throat, my teeth, my temples. Have you ever felt this? The onslaught of your emotions as a physical sensation?
This too will pass. It just has to.
Friday, February 09, 2007
Resident Ketones
Gracie had some higher blood sugars through the night. Not through the roof holy shit high, but in the 180's, which for us is pretty high. Gracie complained of an upset tummy starting at around midnight, but I just told her to lay down and rest. She did on the floor by my bed, and then at 4:30 this morning she ran to the potty and puked all over the floor (at least it wasn't on carpet). I checked her blood sugar and she was 140. I checked her ketones when I got her to pee, and moderate ketones. Damn. My peanut is sick.
So today I have been feeding her ginger ale, testing her blood sugar every two hours (thankfully fairly normal) and testing her ketones (still at small). I called her endocrinologists office just to make sure I'm doing the right thing and discuss other sick day stuff with them. They told me to call back later this evening as well with an update.
I then asked them to mail me a letter stating that I must monitor Gracie's diabetes when she is ill and that I consulted with them today concerning her diabetes. Here she hesitated. I explained to her that I needed this for FMLA at work. I don't have any sick time, and anyways, any day care I know of willing to take in sick children isn't versed in type 1 diabetes sick day care. I also can't see taking her in for a doctor's appointment solely to get a note, you know, copay be damned? I pay 20 bucks to get off work? I shouldn't have had to explain this to her. She should have responded with an
"Absolutely! I can't imagine what it is like negotiating chronic illness, normal illness, AND a full time job (not to mention how your job chooses to interpret FMLA law!)! I'd be so happy to help you with this letter which takes so little of my time to scrawl on a prescription pad or letterhead! It was my pleasure to help make your day today and your next day at work a little easier!"
Fortunately, she acquiesced, and I will be receiving that letter. It is super stressful to have no sick time at work and have to fight for everything possible to count as FMLA. Especially considering I need a doctor's note indicating diabetes or orthopaedic problems to have the FMLA apply. Every single illness Gracie has from the date of her diagnosis will require extra diabetes management. It is just how it goes. It sucks to have to beg for a letter every time this comes up. It isnt that I am abusing the system, it is just I have no other choice. I've used up all my options. And THAT is why we have federal FMLA protection in the first place. So why are these doctors and nurses so freaked out to help me use it?
Anyhow, wish us well on the ketones dropping front. Last I checked they were small, no longer moderate, so that is progress eh? All that gingerale must really be working....Although it seems so backwards to push sugar when their blood sugars are resistant from ketones....Here I am diabetic 15 years and I STILL don't get the ins and outs....
So today I have been feeding her ginger ale, testing her blood sugar every two hours (thankfully fairly normal) and testing her ketones (still at small). I called her endocrinologists office just to make sure I'm doing the right thing and discuss other sick day stuff with them. They told me to call back later this evening as well with an update.
I then asked them to mail me a letter stating that I must monitor Gracie's diabetes when she is ill and that I consulted with them today concerning her diabetes. Here she hesitated. I explained to her that I needed this for FMLA at work. I don't have any sick time, and anyways, any day care I know of willing to take in sick children isn't versed in type 1 diabetes sick day care. I also can't see taking her in for a doctor's appointment solely to get a note, you know, copay be damned? I pay 20 bucks to get off work? I shouldn't have had to explain this to her. She should have responded with an
"Absolutely! I can't imagine what it is like negotiating chronic illness, normal illness, AND a full time job (not to mention how your job chooses to interpret FMLA law!)! I'd be so happy to help you with this letter which takes so little of my time to scrawl on a prescription pad or letterhead! It was my pleasure to help make your day today and your next day at work a little easier!"
Fortunately, she acquiesced, and I will be receiving that letter. It is super stressful to have no sick time at work and have to fight for everything possible to count as FMLA. Especially considering I need a doctor's note indicating diabetes or orthopaedic problems to have the FMLA apply. Every single illness Gracie has from the date of her diagnosis will require extra diabetes management. It is just how it goes. It sucks to have to beg for a letter every time this comes up. It isnt that I am abusing the system, it is just I have no other choice. I've used up all my options. And THAT is why we have federal FMLA protection in the first place. So why are these doctors and nurses so freaked out to help me use it?
Anyhow, wish us well on the ketones dropping front. Last I checked they were small, no longer moderate, so that is progress eh? All that gingerale must really be working....Although it seems so backwards to push sugar when their blood sugars are resistant from ketones....Here I am diabetic 15 years and I STILL don't get the ins and outs....
Thursday, February 08, 2007
Gracie’s Adventures in “Bob-Town”
Yesterday was Gracie’s three month post-diagnosis endocrinology appointment. This appointment is much anticipated, as it is in “Bob’s town”. Bob’s town as in Saint Paul. It is a drive. Normally it takes an hour and 15 minutes, but add some inclement weather, or rather, the accident alley the freeways became yesterday due to black ice, it took two and a half hours. This is always fun. It seems to be a theme for it to take ridiculous amounts of time to reach the Children’s Hospital in Saint Paul. Last time we went in November the drive was made in pouring AND freezing rain. Fun stuff.
So on to the news. Gracie is doing fabulously. She has grown a full inch in 3 months since beginning her insulin regimen. Gracie went from barely being on the growth scale for her height to around the 8th percentile. That is huge as Gracie is technically eligible (or rather was) for growth hormone treatment due to her size! Who needs growth hormones when you have insulin, though? Her a1c went from 5.5% to 5.3%. I don’t think I’ve EVER had an a1c that low. But, considering she is in early honeymoon stages of diabetes, that is what we should expect!
Gracie’s endocrinologist talked a little bit about celiac with us this visit. She is concerned because of Gracie’s height, but because Gracie hasn’t been having gastric discomfort much since beginning insulin, we chose not to test for celiac this time around. We WILL be watching her growth very closely. One item they noted was that although Gracie grew taller, she gained no weight. Is this normal? Who is to say. Gracie has NEVER grown normally, so I think she is on a different dimension of growth normality. It all boils down to time. We will know more in time as we closely watch her growth.
We increased Gracie’s lantus from ½ unit to 1 unit per day. The doctor explained to me that because Gracie’s morning blood sugars are consistently over 100, she’d like to get them a little tighter than that. She also explained to me that Gracie’s blood glucose targets now, when she has so much pancreatic function, will be much different than they will be when she is on short acting insulin. She is hopeful, though, for a few years of only lantus. I told her that I hope Gracie NEVER needs short acting insulin. I laughed (inwardly crying) and told her I knew that was foolish fantasy. Gracie’s doctor was so nice, though, and she said “No, of course it isn’t foolish. If you don’t have hope, what do you have?” It was so obvious in that moment that she regularly deals with families and children with chronic illnesst. She is so right and she set my heart at ease. It is okay to hope.
Later in the day, Gracie had her physical therapy appointment where she received her own pair of Theratogs ($400 dollars worth of straps and Velcro). I have been anxiously awaiting these things. They help to rotate Gracie’s hips and legs out. They are worn under her clothes during the day. It is amazing to see my daughter standing with toes pointed forward. It is amazing to no longer see her legs scissor when she walks. The combined use of the theratogs with her braces has made a huge difference in her gait. She gets tired more easily now, but she is in a lot less pain. I haven’t been hearing any complaints of back pain since we got her first pair of braces, but she has been telling me that her knees hurt. This makes sense as her knees often hyperextend through normal activities. Good news, though, is that she is being reduced to only one physical therapy appointment per week! YAY! The theratogs are going to do the work for Gracie all day everyday that physical therapy was attempting to do in twice weekly visits. I think that is a wonderful 400 dollar investment! It makes time for that Occupational Therapy that we are all expecting to begin (once they get the diagnosis straight in the request for evaluation….whole ‘nother medical story there!)
After therapy we ended the day going to an early education program I signed up for called “Family, Friends, and Fun.” This is a great little program that runs on Wednesdays from 6pm – 8pm. It is designed for parents of children with special needs. They provide a meal at 6pm that you eat with your kids. Then the kids are carted off to be with other kids in their age group for some choice time. They are with kids that have special needs and the siblings of kids with special needs. It is a great group, and the resounding theme is “Children are Children first, and a diagnosis only after they are children.” The parents then cart themselves off to hang out together for an hour and a half. It was great stuff to be with other parents of kids with special needs. Their children had a variety of special needs, but what I got from it was this: I am not alone. These people know what it means to have six appointments a week and then more to do at home. These parents understand what everyday is for me. I am not alone. It was awesome. I’m trying to get Bob to come one week. I think he might enjoy it too.
So, all in all, long and exciting day yesterday. And I was so blessed to have it!
So on to the news. Gracie is doing fabulously. She has grown a full inch in 3 months since beginning her insulin regimen. Gracie went from barely being on the growth scale for her height to around the 8th percentile. That is huge as Gracie is technically eligible (or rather was) for growth hormone treatment due to her size! Who needs growth hormones when you have insulin, though? Her a1c went from 5.5% to 5.3%. I don’t think I’ve EVER had an a1c that low. But, considering she is in early honeymoon stages of diabetes, that is what we should expect!
Gracie’s endocrinologist talked a little bit about celiac with us this visit. She is concerned because of Gracie’s height, but because Gracie hasn’t been having gastric discomfort much since beginning insulin, we chose not to test for celiac this time around. We WILL be watching her growth very closely. One item they noted was that although Gracie grew taller, she gained no weight. Is this normal? Who is to say. Gracie has NEVER grown normally, so I think she is on a different dimension of growth normality. It all boils down to time. We will know more in time as we closely watch her growth.
We increased Gracie’s lantus from ½ unit to 1 unit per day. The doctor explained to me that because Gracie’s morning blood sugars are consistently over 100, she’d like to get them a little tighter than that. She also explained to me that Gracie’s blood glucose targets now, when she has so much pancreatic function, will be much different than they will be when she is on short acting insulin. She is hopeful, though, for a few years of only lantus. I told her that I hope Gracie NEVER needs short acting insulin. I laughed (inwardly crying) and told her I knew that was foolish fantasy. Gracie’s doctor was so nice, though, and she said “No, of course it isn’t foolish. If you don’t have hope, what do you have?” It was so obvious in that moment that she regularly deals with families and children with chronic illnesst. She is so right and she set my heart at ease. It is okay to hope.
Later in the day, Gracie had her physical therapy appointment where she received her own pair of Theratogs ($400 dollars worth of straps and Velcro). I have been anxiously awaiting these things. They help to rotate Gracie’s hips and legs out. They are worn under her clothes during the day. It is amazing to see my daughter standing with toes pointed forward. It is amazing to no longer see her legs scissor when she walks. The combined use of the theratogs with her braces has made a huge difference in her gait. She gets tired more easily now, but she is in a lot less pain. I haven’t been hearing any complaints of back pain since we got her first pair of braces, but she has been telling me that her knees hurt. This makes sense as her knees often hyperextend through normal activities. Good news, though, is that she is being reduced to only one physical therapy appointment per week! YAY! The theratogs are going to do the work for Gracie all day everyday that physical therapy was attempting to do in twice weekly visits. I think that is a wonderful 400 dollar investment! It makes time for that Occupational Therapy that we are all expecting to begin (once they get the diagnosis straight in the request for evaluation….whole ‘nother medical story there!)
After therapy we ended the day going to an early education program I signed up for called “Family, Friends, and Fun.” This is a great little program that runs on Wednesdays from 6pm – 8pm. It is designed for parents of children with special needs. They provide a meal at 6pm that you eat with your kids. Then the kids are carted off to be with other kids in their age group for some choice time. They are with kids that have special needs and the siblings of kids with special needs. It is a great group, and the resounding theme is “Children are Children first, and a diagnosis only after they are children.” The parents then cart themselves off to hang out together for an hour and a half. It was great stuff to be with other parents of kids with special needs. Their children had a variety of special needs, but what I got from it was this: I am not alone. These people know what it means to have six appointments a week and then more to do at home. These parents understand what everyday is for me. I am not alone. It was awesome. I’m trying to get Bob to come one week. I think he might enjoy it too.
So, all in all, long and exciting day yesterday. And I was so blessed to have it!
Tuesday, February 06, 2007
Rewards for Hiding and Rest for the Weary
My son had a rough day at school today. There was a substitute teacher today. Substitute teachers are usually bad news for Sandis. This isn't because Sandis is belligerant and purposefully bad, but because they just don't know how to handle Sandis. It isn't really their fault though. Due to the fact that Sandis does not yet have an IEP, all the special little Sandis rules and regulations get lost in the shuffle when his regular teacher isn't there. Rules like Sandis always holds the teacher's hand in transitions from one room to the next, and other rules that state Sandis cannot use the big restroom down the hall only the small restroom in the classroom. They seem like such little things, but when not communicated, disaster strikes! Sandis's teacher is a smart woman. She made those little rules out of necessity.
Today Sandis hid from his substitute teacher. He went with the class to music, and although he struggled through music, he made it through. But....(and a big but here!) he decided not to join the class in the commute from music room to class. He apparently lingered behind his classmates and hid when the perfect opportunity struck. His poor substitute teacher with 22 other students entrusted to her did not notice he was missing until almost a full hour after music class. (MY! MY! MY!) Sandis also was given free reign to use the big restroom down the hall. This resulted in a toilet flushing, light switch flicking, animal sound making frenzy. And yes, frenzy would be the correct word for it. There is a good reason I ALWAYS take Sandis with me into the Women's Restroom.
Long story short, I received a call from Sandis's Behavior Interventionist. Ahhhhhhh! The joys of receiving behavior related phone calls during work hours from the school! He kindly explained the situation to me, stressing that Sandis had caused quite the stir when he had turned up (or rather failed to turn up) missing. I listen to the story, consternation in my voice, but heart a leaping and stifling a chuckle. These people DESERVE this. Don't get me wrong, Sandis doesn't deserve the harm that comes to him from being given the opportunity to misbehave in such a flagrant manner, but......I requested special education evaluations to begin in OCTOBER! I needn't remind anyone that it is FEBRUARY! and evaluations are FINALLY being completed this week. They have denied (or rather not begun) accommodations for his special needs because of:
1. the school psychologist's vacation
2. their inability to get their shit together
3. their REQUIREMENT of written request (given in November) before accomodating my verbal request for evaluations
4. further postponing ALL EVALUATIONS until receipt of written proof of Sandis's diagnosis
Need I say it again? They DESERVE his behavior. He wouldn't for the life of him get away with that shit at home, but then again, at home, his sensory needs are accommodated. He is NEVER expected to have the normal sense of personal safety that other children may have. Sandis is almost CONSTANTLY under 1:1 or 1:2 supervision at home. He doesn't have the opportunity to sneak away and wreak havoc at home and in the community. His needs are met in ways that the school hasn't been able to do.
So you know what? When Sandis throws a book at a fellow student, destroys something in a fit of aggression (more than likely caused by sensory overload), spits at the teacher, throws himself down and indulges in a tantrum because he was tagged in PE.....I think he needs to do this because they need to see the behavior. And they need to address the behavior in the IEP and make appropriate accommodations. And when they do, we will all be smiling. You know why? We will be smiling because Sandis will have appropriate supervision and won't sneak off when no one is looking (my ever wandering boy). We will be smiling because Sandis will be able to complete all his work, and his teacher won't have to sacrifice helping all the other students so she can devote extra 1:1 time with Sandis. We will be smiling because Sandis will be on an appropriate diet of sensory stimulation that will curb his spitting, hitting, pushing, kicking, and self injurious behaviors at school We will all be smiling because of the accomodations they will make.
And until they do that.....I'll be laughing at their misery. And I'll be writing a whole lot of letters.
On another note, I have been approved for one weekend of respite a month for three months. Depending on my situation with Sandis's SSI application at that time, they will reevaluate my case.
I have not had babysitting since October, and with Gracie's diabetes, I can't afford and don't even KNOW a local person who is willing to take on the fabulously busy son and the equally busy but health challenging daughter. This respite, my friends, is truly going to provide the rest for the weary (the weary person here is me!).
If you ever question whether God provides, think of this. I have been given a weekend a month of free babysitting for my son. And you know what? I can split that up and use it one night for both children a month. Do you know what I'm going to do?
I'm gonna go on a date with Bob.
Today Sandis hid from his substitute teacher. He went with the class to music, and although he struggled through music, he made it through. But....(and a big but here!) he decided not to join the class in the commute from music room to class. He apparently lingered behind his classmates and hid when the perfect opportunity struck. His poor substitute teacher with 22 other students entrusted to her did not notice he was missing until almost a full hour after music class. (MY! MY! MY!) Sandis also was given free reign to use the big restroom down the hall. This resulted in a toilet flushing, light switch flicking, animal sound making frenzy. And yes, frenzy would be the correct word for it. There is a good reason I ALWAYS take Sandis with me into the Women's Restroom.
Long story short, I received a call from Sandis's Behavior Interventionist. Ahhhhhhh! The joys of receiving behavior related phone calls during work hours from the school! He kindly explained the situation to me, stressing that Sandis had caused quite the stir when he had turned up (or rather failed to turn up) missing. I listen to the story, consternation in my voice, but heart a leaping and stifling a chuckle. These people DESERVE this. Don't get me wrong, Sandis doesn't deserve the harm that comes to him from being given the opportunity to misbehave in such a flagrant manner, but......I requested special education evaluations to begin in OCTOBER! I needn't remind anyone that it is FEBRUARY! and evaluations are FINALLY being completed this week. They have denied (or rather not begun) accommodations for his special needs because of:
1. the school psychologist's vacation
2. their inability to get their shit together
3. their REQUIREMENT of written request (given in November) before accomodating my verbal request for evaluations
4. further postponing ALL EVALUATIONS until receipt of written proof of Sandis's diagnosis
Need I say it again? They DESERVE his behavior. He wouldn't for the life of him get away with that shit at home, but then again, at home, his sensory needs are accommodated. He is NEVER expected to have the normal sense of personal safety that other children may have. Sandis is almost CONSTANTLY under 1:1 or 1:2 supervision at home. He doesn't have the opportunity to sneak away and wreak havoc at home and in the community. His needs are met in ways that the school hasn't been able to do.
So you know what? When Sandis throws a book at a fellow student, destroys something in a fit of aggression (more than likely caused by sensory overload), spits at the teacher, throws himself down and indulges in a tantrum because he was tagged in PE.....I think he needs to do this because they need to see the behavior. And they need to address the behavior in the IEP and make appropriate accommodations. And when they do, we will all be smiling. You know why? We will be smiling because Sandis will have appropriate supervision and won't sneak off when no one is looking (my ever wandering boy). We will be smiling because Sandis will be able to complete all his work, and his teacher won't have to sacrifice helping all the other students so she can devote extra 1:1 time with Sandis. We will be smiling because Sandis will be on an appropriate diet of sensory stimulation that will curb his spitting, hitting, pushing, kicking, and self injurious behaviors at school We will all be smiling because of the accomodations they will make.
And until they do that.....I'll be laughing at their misery. And I'll be writing a whole lot of letters.
On another note, I have been approved for one weekend of respite a month for three months. Depending on my situation with Sandis's SSI application at that time, they will reevaluate my case.
I have not had babysitting since October, and with Gracie's diabetes, I can't afford and don't even KNOW a local person who is willing to take on the fabulously busy son and the equally busy but health challenging daughter. This respite, my friends, is truly going to provide the rest for the weary (the weary person here is me!).
If you ever question whether God provides, think of this. I have been given a weekend a month of free babysitting for my son. And you know what? I can split that up and use it one night for both children a month. Do you know what I'm going to do?
I'm gonna go on a date with Bob.
Sunday, February 04, 2007
Books and Other Such Things.......(Our Weekend)
In light of my recent dilemnas surrounding money, I did the only reasonable thing this weekend to ease my heart. I went shopping.
Ya well, so perhaps it was not the wisest thing I've ever done, depleting my savings account further, but it sure felt good. I bought books. Bob and the kids and I visited Barnes and Noble. Due to the fact that we have no cable and thus no televison channels at all right now I have been reading much more. And I have been craving some fiction. Easy fiction. Not classic fiction I can read a thousand times over, but easy fiction that will ease my mind after a long day. So I bought the five Anne Rice books I have not yet read, and the Davinci Code. I imagine that for the next month I will have plenty to read. And I only spent fifty bucks....(aack!)
It has been ridiculously cold this weekend. Stupidly so. So stupidly cold that it killed my car. I love waking up in the morning, heading out to the car with the full inentions of heading off and away to wherever I intend to drive, and am met with the slow, cold, sluggish uffda I just can't make it from my car. Fabulous. Really. Two days in a row. So I bought a battery. An expensive one. The most expensive battery I could find at Walmart. So, let's hope my car continues to start and the 60 some dollar battery I invested in has many many returns in successful car starts.
It was Sandis's week at church today. Things went well, but I was less prepared. I tempted fate and we went to church without a brush. It was much harder. Next time I will bring the brush and I will brush before we go, and anytime inbetween. It is awesome how much my son loves church. He is not afraid to enjoy just being in God's house. Sometimes I really wish I could find that same joy in his sanctuary. Maybe that feeling is lost with age. I hope not.
Ya well, so perhaps it was not the wisest thing I've ever done, depleting my savings account further, but it sure felt good. I bought books. Bob and the kids and I visited Barnes and Noble. Due to the fact that we have no cable and thus no televison channels at all right now I have been reading much more. And I have been craving some fiction. Easy fiction. Not classic fiction I can read a thousand times over, but easy fiction that will ease my mind after a long day. So I bought the five Anne Rice books I have not yet read, and the Davinci Code. I imagine that for the next month I will have plenty to read. And I only spent fifty bucks....(aack!)
It has been ridiculously cold this weekend. Stupidly so. So stupidly cold that it killed my car. I love waking up in the morning, heading out to the car with the full inentions of heading off and away to wherever I intend to drive, and am met with the slow, cold, sluggish uffda I just can't make it from my car. Fabulous. Really. Two days in a row. So I bought a battery. An expensive one. The most expensive battery I could find at Walmart. So, let's hope my car continues to start and the 60 some dollar battery I invested in has many many returns in successful car starts.
It was Sandis's week at church today. Things went well, but I was less prepared. I tempted fate and we went to church without a brush. It was much harder. Next time I will bring the brush and I will brush before we go, and anytime inbetween. It is awesome how much my son loves church. He is not afraid to enjoy just being in God's house. Sometimes I really wish I could find that same joy in his sanctuary. Maybe that feeling is lost with age. I hope not.
Friday, February 02, 2007
IEP LETTER #2 - Further Concerns
This is IEP letter #2, which they will receive next week. I’m making sure I leave a trail of my regular concerns. We haven’t had even our first IEP meeting yet, but I’m so looking forward to it!
February 2, 2007
Dear Katie,
I have had the opportunity to have a couple of discussions with Sandis’s teacher this week and I have a couple of concerns that I believe I touched on in my last letter but wanted to go into a little more concerning one specific situation.
On February 1, 2007 Sandis became very overwhelmed in class and threw a book at a student. His teacher walked him to the office to have some time to regroup and on the way to the office he kicked the wall. Sandis has had several instances at home as well where he gets very overwhelmed and anxious and responds aggressively. I am concerned about aggression against other students, himself, and property. Sandis when overstimulated, anxious, and upset has quite a bit of trouble thinking things through and handling impulse control. I believe this is injurious to him in his interactions with his peers, injurious to his self-image, and also hard for the teacher, as she cannot always intervene with Sandis before he gets to this level of frustration.
I feel that it is important that we address Sandis’s sensory needs on a regular schedule along with developing a plan to help address unwanted and aggressive behaviors such as these. I also believe that Sandis needs to have consistent help determining when he needs a break and go to a quiet area to regroup.
I have been extremely impressed with how wonderfully Sandis’s teacher, Mrs. Brown, has worked with Sandis. She does not deal with Sandis in a recriminating matter but understands that Sandis’s behavioral problems are rooted in things other than purposeful defiance. I do have some concerns that with the number of students in Sandis’s class that she simply does not have the time to give Sandis all of the extra help he needs, but I know that this concern will be addressed in his IEP.
Thank you so much and I look forward to scheduling our first meeting to review the evaluations!
Sarah
sarahiamslh@aol.com
February 2, 2007
Dear Katie,
I have had the opportunity to have a couple of discussions with Sandis’s teacher this week and I have a couple of concerns that I believe I touched on in my last letter but wanted to go into a little more concerning one specific situation.
On February 1, 2007 Sandis became very overwhelmed in class and threw a book at a student. His teacher walked him to the office to have some time to regroup and on the way to the office he kicked the wall. Sandis has had several instances at home as well where he gets very overwhelmed and anxious and responds aggressively. I am concerned about aggression against other students, himself, and property. Sandis when overstimulated, anxious, and upset has quite a bit of trouble thinking things through and handling impulse control. I believe this is injurious to him in his interactions with his peers, injurious to his self-image, and also hard for the teacher, as she cannot always intervene with Sandis before he gets to this level of frustration.
I feel that it is important that we address Sandis’s sensory needs on a regular schedule along with developing a plan to help address unwanted and aggressive behaviors such as these. I also believe that Sandis needs to have consistent help determining when he needs a break and go to a quiet area to regroup.
I have been extremely impressed with how wonderfully Sandis’s teacher, Mrs. Brown, has worked with Sandis. She does not deal with Sandis in a recriminating matter but understands that Sandis’s behavioral problems are rooted in things other than purposeful defiance. I do have some concerns that with the number of students in Sandis’s class that she simply does not have the time to give Sandis all of the extra help he needs, but I know that this concern will be addressed in his IEP.
Thank you so much and I look forward to scheduling our first meeting to review the evaluations!
Sarah
sarahiamslh@aol.com
Thursday, February 01, 2007
Government Assistance? What?
After work and therapy (Occupational and Physical) I decided what the heck and picked up some Chinese food and some pinot grigio (I have a headache). I used my reliacard to purchase the wine, which is a debit card that accesses child support funds deposited. The clerk asked me what the yellow reliacard strip at the top of the card meant and I told him it was child support. His remark back to me was "Oh, I figured it was some type of Government assistance."
What the F*&*??????? Since when did child support become government assistance? Honestly, when did my child's father paying me a measly butt crack thirty bucks a week (if I'm lucky) become equivalent to government assistance?
So....I told him that child support isn't government assistance. It is "parental" assistance, which has nothing to do with government and everything to do with personal responsibility and accountability. (I can't believe I found words that good when I was that irritated.)
His response? "Well I've seen guys with this card too, so it can't be just child support."
Where is this guy from anyways? Pluto? So now child support is government assistance and on top of that men can't receive it?
I'm in my own little world of disbelief. But...on a lighter note, the pinot grigio is FABULOUS :)
As a little diabetes aside, miss peanut had her highest blood sugar thus far with a 333. I was ready to freak out and call mr. endo man to crank out the novolog, but I decided to wait an hour, and it had creeped down to 249. Feeling good about the drop, I decided to wait ANOTHER hour (but I only made it 30 minutes) and she is down to 128.
I'm certainly not happy about cracking the 300 mark. In fact, if I didn't have such a splitting headache I'd be a bit more concerned. But I'm grateful she worked herself down. It just makes tonight a little easier.
one day. One day at a time.....
What the F*&*??????? Since when did child support become government assistance? Honestly, when did my child's father paying me a measly butt crack thirty bucks a week (if I'm lucky) become equivalent to government assistance?
So....I told him that child support isn't government assistance. It is "parental" assistance, which has nothing to do with government and everything to do with personal responsibility and accountability. (I can't believe I found words that good when I was that irritated.)
His response? "Well I've seen guys with this card too, so it can't be just child support."
Where is this guy from anyways? Pluto? So now child support is government assistance and on top of that men can't receive it?
I'm in my own little world of disbelief. But...on a lighter note, the pinot grigio is FABULOUS :)
As a little diabetes aside, miss peanut had her highest blood sugar thus far with a 333. I was ready to freak out and call mr. endo man to crank out the novolog, but I decided to wait an hour, and it had creeped down to 249. Feeling good about the drop, I decided to wait ANOTHER hour (but I only made it 30 minutes) and she is down to 128.
I'm certainly not happy about cracking the 300 mark. In fact, if I didn't have such a splitting headache I'd be a bit more concerned. But I'm grateful she worked herself down. It just makes tonight a little easier.
one day. One day at a time.....
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