Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Thursday, October 19, 2006

I've Got a Lot to Think About Today

Sandis had his appointment today. I think that things went well, despite a few early set backs. I arrived at the clinic a half an hour early, which was good. I had budgeted plenty of time to beat traffic and still make it through downtown Minneapolis. I was on time. Yippeee! The doctor, however, was NOT on time. That really bothered me. Finally, at 9:30am, one half hour after our scheduled appointment time, I decided I was really going to be bothersome and stand by the front desk and insist they find out where this guy was. Turns out the nurse that had scheduled our appointment hadn't relayed the info about the appointment to said doctor so he was nowhere to be found and wasn't planning on being there at all anytime today. GREAT! They did manage to find someone else to do the evaluation, and everything worked out well, but that was AFTER I broke down in tears at the front desk explaining we had all woken up at five and left Saint Cloud at 6:30 am to arrive here on time and beat traffic. Thank God they did not send me home without the eval. I would have been freaked!

I'm still working through a lot of the feelings I have after receiving their initial diagnosis for Sandis. They told me they believe he has a primary diagnosis of Pervasisve Developmental Disorder and a secondary diagnosis of ADHD. They then informed me that they do not treat the secondary diagnosis, only the first, as the first diagnosis likely aggravates the second. Have you ever heard of PDD? I really hadn't and I left there without a clear idea as to what it was. I did have quite extensive conversations with the doctors about my concerns for Sandis and for the first time in like, well, EVER, I felt like someone understood what it was like to be Sandis and to be AROUND Sandis. I felt justified and I felt RIGHT in my intense gut feelings that Sandis was not another ADHD case and that something else was really going on that was causing the hyper/impulsive behavior. I hope that as I learn more about this developmental disorder and we move forward with treatment plans that I will really have a chance to understand how my son is seeing, hearing, and feeling the world.

On that note, I also have a LOT of fear. This is brand new territory to me. All the sudden the doctor is talking about IEP's (I'm sure I'll know what this is up and down and backwards in a few months), dealing with school districts, family skill therapists, psychiatrists (We understand you don't want to treat with meds but they will help him and you should at least learn about them), occupational therapists, psychologists, PACER organization (you should really know your rights when it comes to developmental delays). I am on information OVERLOAD and I really know NOTHING!

I chose to start the evaluation stage in the cities, and I've decided to stay with care in the cities until we develop a cohesive treatment plan. At which point I will take this said treatment plan and transfer care closer to home. But all of these appointments! All this time missed at work! AAAAAAAAACKKKK! I had the foresight to pick up an FMLA form for this today in the two whole stinking hours I worked, but still, I'm wondering how we will manage as I work less hours, and we spend quite a bit of time in doctors offices, therapists offices, and with the school district while we hammer out a plan that meets my son's needs but also isn't too invasive and doesn't single him out too ridiculously. I mean, he isn't delayed in his learning. Sandis is a bright bright kid. It is the other things that are of most concern.

So I am sitting here, drinking beer #2 (I haven't drank in weeks) and I'm trying to process all of this. I'm not having much luck, obviously, I'm not much use after ONE beer much less TWO. I've entered a whole new world. In some ways, I am relieved. So much makes sense and I'm sure as I learn more about this disorder and the intricacies of it even MORE will make sense. I feel like we have opened a door to moving forward. I feel like God has given me a window to understanding Sandis. A lot more makes sense. But then after I feel that relief, I am overwhelmed by what is to come, and I hope I make good decisions. I hope that I can be strong to make the RIGHT decisions. I hope I know when to take advice, and when to ditch advice. I hope I remember that Sandis is Sandis. With this diagnosis this little boy does not change one iota, but perhaps how we help him succeed changes. It is all very very scary. And not scary like loud noises and monster house scary. Like scary I hope I don't screw up and regret it FOREVER scary. That kind of scary. And that is really damn scary.


Scott K. Johnson said...

Hey Sarah,

My goodness, yes, you do have a lot to think about.

But - you learned how to deal with diabetes, and all that it entails. If you can do that, you can tackle anything.

It is overwhelming, and because it's all about your child, you are feeling like you need to fix it, and fix it as soon as possible.

Slow down, take some deep calming breaths, as God for help and guidance and clarity in the process .

You can do it. You are a miracle worker.

Please let me know if there is anything I (we) can do for you. I would also LOVE the opportunity to meet you guys somewhere for a happy meal or something if you are in town for an appointment and have some time to kill. Just let me know.

I also completely understand if you're weirded out by meeting people you only "virtually" know.

Either way, thinking of you and I firmly believe you will handle it all very well.

Lyrehca said...

I'm sorry to hear about your son's diagnosis. LIke Scott, I was thinking that it was like learning about a diabetes diagnosis. It's a lot to handle in the beginning, but in time, the management will likely become second nature. Good luck with figuring it all out.

Minnesota Nice said...

Sarah, you are an intelligent womahn and devoted mother. You will be able to work toward the best possible outcome for Sandis (although I know the traveling back and forth is a pain.)

GClef1970 said...

Sarah -

Thanks so much for making yourself known on my blog. As I am sure you will discover and research endlessly (if you are anything like me!!), PDD-NOS is the category of "Pervasive Developmental Delay - Not Otherwise Specified" and it falls under Autistic Spectrumn Disorders. Basically, this means that Sandis is showing certain signs of autism while he is not showing other signs. It is the mildest form on the autistic spectrum.

It is a LOT to handle when you first discover something like this about your child. Allow yourself to be stunned, shocked, sad, devastated. It is okay. I discovered that Conor was autistic almost a year ago and I still go through those devastating days sometimes. BUT, all is not lost. After you process it for a while, you will be able to remember that NOTHING about Sandis has changed. He is still the same beautiful little boy that he was before you found out that his "quirks" have a name. Don't let the word "autism" scare you.

If there is anything that I can do to help you through this initial stage of discovery, please feel free to contact me:

Never forget: God doesn't make mistakes. Our boys are masterpieces, beautifully made in His image.

In His love,

Anne Findlay said...

Hi Sarah,
I agree with what others have said here. I hope that the diagnosis will eventually help you to help Sandis enrich his life even more.

There is an excellent PDD clinic at the University of California, San Francisco; I work with kids from there from time to time, most of whom are farther along the spectrum when it comes to PDD (they mostly are autistic or have asperger's syndrome). I am always amazed by these kids and how well they do.

Fortunately for Sandis, you understand that a chronic condition does not define who you are but can, despite the difficulties, make you a better and wiser person.