Just an example of what I go through on a semi-regular basis....

Below is an example of something I wrote up to submit for the purpose of gaining services for Sam. Back in March, we got approved for eligibility for Medicaid Waiver services. This was after 3 1/2 years of messing around with countless forms, doctor visits and a myriad of evaluations. Little did I know the groveling was still not over. So, I forge ahead. Keeping in mind it's in our best interest to make things seem quite bleak, he's what I have to say to try to "sway" the powers that be in a competition for limited funds.

We began the process of applying for services 3 1/2 years ago, and in that time, we have only seen the need for them increase. Our son Sam was diagnosed with Asperger's Syndrome at age 4 1/2, so was never eligible for early intervention, and received only limited services under CPSE due to the timing of his diagnosis. His developmental functioning level at the moment is at approx. the age of four years. Sam cannot attend school in our home school district, and therefore must be bussed 20 miles each way to attend a self-contained BOCES classroom. He has a history of outbursts and impulse control that cannot be managed in a regular, even integrated classroom. Impaired social interactions with peers are the very essence of his disability. His anxiety level proceeding and during such encounters is so profound that it is often counter-productive to even attempt them. He cannot function independently in activities that neuro typical children commonly engage in- in fact he has great difficulty functioning in these types of settings even with extensive adult intervention. Acute anxiety is also present upon any kind of change that occurs in his life. It generally takes the first 1-2 months of the school year for him to become acclimated to a new environment, then regression is seen after school breaks, and even from day to day. He often has difficulty settling into his morning routine at school. These difficulties are reflected in behavior issues, inability to attend to even simple tasks, and disrespect to adults and peers alike. Any new activity that is introduced either at school or at home needs to be repeated many times over before he reaches a certain comfort level with it. Often teachers, therapists, and even us, his parents, are not patient enough to see things through to a satisfactory ending.
At home, Sam is very dependent on mom and dad for all of his needs. He needs prompting to do nearly every basic task from dressing himself to brushing his teeth. He has never gone to a friend's house to play unsupervised, does not answer the phone, and does not initiate any kind of independent moves away from mom and dad. Mom cannot work outside the home because she must be available to consult with teachers at a moment's notice, maintain Sam's familiar schedule, and manage his therapy and paper work.
We have been working with a family therapist for the last 3 years. While we have seen some progress, clearly there is still a long way to go. Our concern is that we want Sam to be able to function on his own as an adult and not become a ward of the government. We feel that the time is becoming critical to keep him on the right path toward achieving this goal. The therapy is very costly, both in terms of meeting with the therapist and with subscription to a web site that augments the program we are using. With only one income, the financial burden is becoming increasingly harder to bear, and of course insurance covers nothing. We seek the Medicaid waiver service, Res Hab services to help get Sam out into the community and start working on those critical social skills, and Respite for mom and dad to get a much needed break now and then.

Actually, I feel like Sam is kinda on a good streak right now. Life at home is tranquil, school seems to be pretty even-keel, and he gets the jokes. He seems to be growing a little right now- maturing and handling things a little better. I don't plan to let anyone at Medicaid know that, though.

"Look me in the eye..."

I've just finished reading John Elder Robison's "Look Me in the Eye-My Life with Asperger's". It's a great read, highly recommended to me by several friends, and now I can add my endorsement. Aside from the obvious reason why I would enjoy this book, there's the fact that it's just plain full of good stories. It reminded me so much of another memoir that I totally enjoyed and recommend to people all the time- "Angela's Ashes". These two books have so much in common- both written by born storytellers who had not only the material to draw from, but also the rare gift of putting words down on paper in an entertaining way. Both men grew up in less than optimal circumstances, yet refrained from telling their stories from the postition of the victim. The events of their lives were told in matter-of-fact detail, no excuses or pandering for sympathy. Both wrote with humor about situations that might have come off as heartbreaking and depressing if left to less capable writers. I tend to admire people who are dealt difficult circumstances, yet rise above them and become exceptional at what they set out to do (or fall into!) It's the old "lemons-to-lemonade" adage. One thing I've come to believe is that a lot of times, until you are tested in life, you haven't had a chance to prove what you can do. If things just go along at a leisurely pace, nothing too bad happens, days pass pretty much like each other, you are never given the chance to really shine, to really make a difference. I know, and have often said, that I wouldn't be 1/2 the person I am right now if I didn't have the challenges that we have. Reading the experiences of John Elder Robison and Frank McCourt make me feel more determined to succeed. Inspirational, without being sentimental or sappy. That's what I'd call those books.

Unmotivated, part II

I find I'm still as unmotivated as I was a couple of weeks ago, only now I sense some self-doubt and desperation creeping in. I'm thinking for whatever reason this is a by-product of having too much time on my hands. The self-doubt is sneaking in across all aspects of my life. Sure there is the usual "Am I doing enough for Sam?" worries, but add to this some other stuff. For example, I'm working on a genealogy case that is, at the moment, stalled due to lack of information. I'm waiting for replies from queries to notoriously slow and often non-responsive agencies to hopefully propel me forward. My client has already contacted me, looking for an update. Cognitively, I realize that she probably just doesn't get how slow things in the genealogy world move (these people are, after all dead for years and will remain so!), but part of me takes it as an indication that maybe I'm just not up to the task at hand. I don't like the thought of failing to find something for my client, especially since I'm being paid. Another cognitive thought I have about all this is that I know that I'm good at what I do. I know that if there is something there to be found, chances are very good that I will find it. I just always worry that maybe this will be the time when I can't find anything, and of course if that happens I'll be thinking it is my fault for not thinking of the one thing in a million that would supply the answer I'm looking for. I can see that it's probably like that with my pursuit of help and opportunities for Sam. I'm entirely self-taught in that area as well.
I just got done reading Susan Senator's book "The Autism Mom's Survival Guide". The points she makes in it are excellent- things like knowing how to take care of your needs so you can be fresh and prepared to deal with your child, giving yourself a break for not being the expert all the time and needing help and guidance. The thing that she wrote about that most struck me was that she felt her attitude toward her son was the thing that made her life most often the toughest. During the times that she saw more of the autism and less of her son, she found the going tougher. When she could sit back and just appreciate the things her son had to offer, and not look at him through the eyes of the rest of the world, she was happier, and so was her life overall. I have to believe that I'm guilty of that crappy attitude thing. Although my main focus is usually trying to figure out what I can do to help Sam, I realize that probably I'm not spending enough time just living life. I have to remind myself at least 50 times a day that it's ok if he's not playing baseball, or riding bikes with other kids, or even asking to have anyone come over. These are experiences that many children have, but not all have them at the same time, or at the same place. It's not fair for me to look at Sam through glasses meant for how my experience was, or through a telescope that reflects some other kid's desires. I need to stop worrying about what ISN'T and embrace the great things that ARE! Wish me luck!