Great Big & Blue & a Peanut (No Less!)

Me: Goodnight my wonderful pumpkin and beautiful little peanut.

Sandis: Who is the pumpkin and who is the peanut?

Me: You are the pumpkin Sandis because pumpkins are bigger than peanuts. (duh?!)

Sandis: But great big blue peanuts are bigger than most regular pumpkins. (said with calm confidence)

(Um, yaaaaaaaa)

Surgery Central

Sandis had his tonsillectomy/adenoidectomy on July 20th. The surgery went well, and was accompanied by the normal (I assume?) fretting of a parent waiting for a child undergoing surgery. Sandis was pretty mellow the whole day of surgery and although he did have pain, it didn’t seem to be all that overwhelming. I believe he is one of the few children that actually manages to GAIN weight after this surgery. He was in some sort of hog ice cream heaven over the week recovery period. I stayed home with mister Sandis for an entire seven days, and upon my return to work, I was singing the joys of a full time job and revisiting why stay-at-home mom-ness just doesn’t work for me. Not.one.bit.

I have been recovering from my back relapse from June, or was that July, or even December 2005? Have I ever gotten any better in the back respect? It seems that every time I put my running shoes back on I am regrettably pulling them back off a few weeks later. This time around I did some serious follow up. I started with my GP (hello medication!). I moved on to the Physician’s Neck and Back Clinic, which specializes in vigorous rehabilitative physical therapy. I then meandered to a surgeon, specifically, a surgeon who operates only on the spine (at my doctor’s bequest). I ended up with a boatload of information and a difficult decision to make.

I have two herniated discs in my lumbar spine. That in and of itself is not all that big of a deal. Loads of people have herniated discs and do just fine. I managed to separate myself a tad from these loads of people by acquiring progressive weakness in my right leg. Harrumph. This weakness was first discovered with my knee injury in July of last year (how do I manage to atrophy muscles while training for two half-marathons?). It wasn’t noticeable to me before I began physical therapy for my knee and it was determined over time by my physical therapist that the weakness was more than likely a side effect of the back injury from December 2005. Now in July of 2007, after yet another flare-up of my deviant lumbar region, the weakness is noticeable enough to be causing an unfortunate limp and an even more unfortunate lack of coordination. Double Harrumph.

Getting on to my difficult decision, I am in the unfortunate position of deciding whether or not to have a microdiskectomy. Ick. My surgeon recommended it. It was hinted that it might be recommended by my back physician. And I am just beside myself. Not so much, just trying to find the fortuitiveness within myself to confidently make the decision to either have surgery or not have surgery. I am leaning towards the surgery, but there is so much fear involved with not only going under the knife, but also with taking up to FOUR FREAKING WEEKS off of work. All this with no guarantee that my leg will regain strength, coordination, or lose that funny sensation it has about it. And should I choose to not go under the knife? I face either a condition that is progressive and non-reversible, or a condition that is static (stays as is).

So what do I do? I have no idea. I guess I’ll let you know when I get the kinks in my decision-making system worked out. Till then, you can tell which gal I am from afar by the gimp in my step and the midline straight lips that stripe my expression.

Pause

The opportunities for a hidden pause, an exaggerated pause, a pause of any type in which my only company is myself are rare. Rare. Wonderful. Noteworthy. Memorable. Perhaps my use of adjectives could be further expanded. Perhaps I am expanding beyond what is necessary.

I paused this weekend. I was firmly locked in bouts of longing and indignant fanciful thoughts. An Escape sans booze became most necessary. I paused this weekend (these past FEW weeks in all actuality) to read.

Have I yet emerged?

Post Wicked (by the illustrious Gregory McGuire) perhaps I shall emerge. Until then, consider me on pause (emotionally speaking).

(And then, outside of being on pause, I am most decidedly wicked wicked wicked…)

On a different note, I was the grateful recipient of the Rockin' Girl award from a fellow mom over at Hayleighbug’s Health Journal.




Now I’ve never necessarily considered myself “rockin'”….Although, you haven’t seen me in my finer moments imagining myself to be famed Jack White.

And although I am no “Martyr for My Love For You” I imagine myself (in my most secret thoughts) to have the energy to match his genius…. But I digress….

I have to thank this fellow mom of special needs children, whose life is touched by something never asked for, never wanted, rarely appreciated, but singularly transforming where our lives and our children’s lives are concerned. I have to thank her for thinking I rock, and then sharing that with all of you in her own forum.

I think I am supposed to pass this on to a fellow blogger, and indeed I shall. I’m passing it on to a mom that makes me laugh. Every.Single.Time.I.Read.Her.Blog.

Sometimes challenges seem that much more “doable” with a smile on your face and a chuckle powering your demeanor.

Thanks Whitterer on Autism

Pass it on if you like, but if you just want to keep it for a while, that’s cool too.

India

Fellow mom from Whitter on Autism pointed me in the direction of this moving post from another fellow mom.

There are things that you realize in your dealings with your children that you just wouldn’t see and wouldn’t know if they weren’t special needs. You see traits in your children that you would never have had an opportunity to see to any extent were they not special needs. With my peanut Gracie, it is so often how she proves to me again and again the flexibility of her soul and her body. While a tumble from her irregulated gait may put my heart in my throat, it is liberating to see her get up (sans tears) again and again. It is soothing to see her try to poke her finger, herself, for FUN. What’s up with that? I think it is great, because I am seeing an aspect of her personality that is gorgeous and strong and adaptive and beautiful. With Sandis, he tickles me with his off-the-wall observations and under and sometimes over generalization of practically everything. His ingenuity touches my heart in ways that I never imagined.

I have not limited my grief. I have allowed myself to grieve for what I wanted for my children initially. And occasionally I allow myself to relapse into that grief. Because, yes, things ARE different than I ever every expected. My children are not what I expected and in many ways not what I hoped. Is that terrible to say? I don’t think so. On the flip side, my children have given me joys in ways that I could have never anticipated. It is these joys that lend light and fortune to my everydays. These joys are the unique joys of special needs parenting. It’s funny though because they are joys that are shared with everyparent, not just specialneedsparents. They just look different. At first they are undiscernable, but later we figure it out. Those same parent loves, parent prides, parent joys. Just different.

And that is to be expected.

All In A Question

11. Tell us why you would like to participate in the Partners in Policymaking program.

Navigating the system in regards to my son and his autism spectrum disorder has been challenging for my family and myself. My son receives SSI, has a county developmental disability social worker, goes to Occupational and Speech Therapy, has a play therapist, an IEP, and receives PCA services. Any services my family receives from county or federal resources were received after an intense application period. I reference the application process as a period because of the amount of time and involvement it requires from the caregivers of the child you are applying for.

I have thought many times in our journey to receive appropriate services that I have been lucky. I am lucky that I happened to find an early childhood autism specialist that knew of resources to help my family and wanted to help us apply for and receive them. I am lucky that I am a highly organized person. I am blessed to be handy with a pen and eager to write letter after letter to help achieve goals in regards to my son’s care and services. I am blessed to be literate and connected with so many people that help me understand special education and disability law.

I recognize that there are many families that are touched by developmental disabilities that are not this lucky. I have met these families. I see them every day where I live. I live in a lower income controlled community where many of the tenants actually receive disability or have children that receive SSI. I live with people who need so much more and have no idea how or where to get the help they need. These families are not blessed with the skill to compose a letter that eloquently states their need and why they believe they should be accommodated. They do not have the tools to hop on the Internet and research special education or disability law.

In the past year I have fought for appropriate special education services for my son. I enlisted the help of PACER in this fight. I feel fortunate to have been given the opportunity to ask for their personal help in my son’s educational plan. I also moved into a new town home and had to file a HUD complaint (based on reasonable accommodations for a tenant with a disability) and contract a lawyer to receive a duplicate key for my son’s PCA. I have fought for my son’s rights and my family’s rights. I believe it is my social responsibility to use the overwhelming amount of knowledge I have gained through helping my son to help other families.

Partners in Policymaking will be the program that will give me an understanding of the system that I do not currently have. Partners in Policymaking will equip me to be a vessel of change for the community.

I am called to help families that are touched by developmental disabilities. I recognize the need for strong advocates for vulnerable families and children. I can be that strong advocate, and I’m hoping that Partners in Policymaking will help me.

1, 2, 3 Things To Do

There has been a lot on my mind lately and quite a few prefaces of thought have turned me upside down. Here are the main three:

1. Partners in Policymaking program and my application, which is due on July 27. I have ONE remaining question, which I intend to put my heart and soul into writing, and I haven’t managed to find the ‘gusto’ to sit down and invest said heart and soul into it yet. I guess I have a project this evening.
2. The implications of domestic and partner abuse. Why does an abused person go “back” to an abuser after having wrenched free more than once? I’ve been thinking on this quite a bit lately. Outside of the abuser/abusee dynamics, there are the dynamics of close friends and family, and their exclusion in the face of a loved ones abuse is stifling.
3. Back pain. Lots of stabbing uninvited back pain. I’m heading to the doctor this afternoon, and I have another (2nd opinion?) appointment tomorrow at a clinic that specializes in aggressive rehabilitation for patients with chronic back pain. I’ve been dealing with this on and off since December of 2005. The kids are post-evaluations and I’m ready to venture into the murky treatment waters of lower back pain.

My energy is consumed by #3. My heart is consumed by #2. It is no wonder I haven’t gotten around to #1.

Autism – My Politics

I am aware of politics surrounding autism. I am aware of them. I’m not exactly sure what the politics are and the premise surrounding each angle, but I am aware of their existence. I have read a little bit about chelation, some about the genetics of autism, and a little bit on thimerisol. I have read a little, and I have moved on.

I have my own politics concerning autism. Neighborhood politics if you will.

My son is on the autism spectrum, and I’m willing to bet that around 50% of my readers read this blog to read about our experiences with autism and with how autism touches our lives (perhaps how life touches our autism at times?). I have my own politics in regards to autism because of my son. I’m not seeking a cure for my son’s autism, just as I am not seeking a cure for my diabetes, or my daughter’s. My politics focus more on the challenges that autism provides us on a daily basis. My politics are singular, and somewhat community based in nature.

How do I keep a child that has very little concept of personal safety, safe? How do I reinforce stranger danger to a child that thinks of every stranger as a new best friend? How do I instill fear without killing the joy? How do I manage behaviors in a way that is respectful of my son and his feelings but also respectful of all other members of the family? How do I teach basic skills like how to go out to the store and handle all that external stimuli when each outing is so difficult and disruptive? How do I instill independence in a child that has aide for almost all he does? How do I teach love and acceptance of all different children with all different abilities to my neighbors? How do I make information available to my neighbor’s concerning autism while still honoring my child’s right for privacy and respect and recognizing that he should not be in an “autism box.” He is a child first, always a child first. And how do I respectfully get the word out to those I meet in daily life about resources available, if you suspect or have concerns about your own child’s development? (I’ve walked this road, I’d love to share what I’ve learned.)

As you can plainly see, my “politics” don’t care about genetics. My politics aren’t focusing on cures. My politics focus on “making it”. My politics focus on my child and my family and my neighbors. I can’t jump out of my box and say that differing autism politics are wrong, as each angle serves it’s own purpose. But being a mom on the front lines, being a mom that L-O-V-E-S a child with autism, my focus doesn’t go too far beyond our own set of experiences. My focus doesn’t go too far beyond my child other than to be a resource to other families who are also on their own autism path.

I recently had the opportunity to help a neighbor who had developmental concerns about her young two year old. I gave her a phone number to call. That is all. And now she is on her own autism path. Through the past several weeks I have had an opportunity to be an outsider looking in as she sits through each evaluation, and learns more and more and more about what is touching her life. This past week she received her first “official” autism diagnosis for her son. Seeing her face, her body language, when she told me….Her heart was on her sleeve. And it could have been my own heart. We joined in a hug, and we each shared tears. Our own tears. Our own paths. Two paths on their own autism path, briefly touching.

These types of experiences make me realize that my autism politics really do matter, and they touch others beyond our four walls. My neighborhood politics have their place. My shoulder, my tears, my acceptance. All of these things have their own special purpose in the lives of the people I meet every single day.