Timing is Everything!

There is this thing down here in Florida, not sure if it’s everywhere so I hope I don’t sound ignorant. It’s called the medwaiver list and it’s something you need to get your child with a disability on so they can get some government funding. Literally speaking: Medicaid Waiver Programs allow recipients to ‘waive’ institutionalization and instead choose to direct services to assist them to live in the community. It is administered through the Agency for Persons with Disabilities (APD). I have avoided doing this for a long time because there is a waiting list of thousands and no real money has been devoted to it yet. I have felt guilty about not doing this and I was somewhat pleased to learn that many of my “autism mommies” have not done this either. There is coordination of paperwork and an intake meeting that involves bringing your child. I once went to a meeting about doing this years ago but somehow I felt it wasn’t worth my time. A close friend of ours and terrific advocate recently called me out on this. He let me know it was not ok to avoid the list or not get your kid signed up. So I faced it, went to the website downloaded the application and sent it in. Not long after I received a letter stating that I had to schedule my intake meeting, bring a long list of documentation and Bryan. Ok, I can do this, no big deal. I was feeling proud of myself and grateful to our friend for giving me the nudge I needed. I don’t typically even need a nudge for anything, but it was one of those risk/reward assessments I do in my head so it got pushed down in priority. Bryan and I went to the intake meeting last week. We had a 9am appointment and often Bryan is anxious if he doesn’t know what to expect. However, alone time with Mommy on a weekday morning, without a doctor’s appointment is warmly accepted by Bryan and so he was calm and delicious on the drive to Fort Lauderdale. We were taken right away and we sat with the Human Services Counselor, a very nice woman, in her tiny cluttered office. She went through all of our papers and let us know what was needed as far as follow up paperwork. Then…… she decided to ask Bryan a bunch of questions. Not one or two questions, but many, about 10. Here is the kicker, he answered them all calmly and correctly. Now, maybe for your kid this is easy, but not for Bryan. The questions were not complex, “what is your birthday”, “what is your address, phone number, etc.”. These questions were questions that all teenagers should be able to answer, and I was confident when sitting there that Bryan did in fact know the answers. The issue really is more about whether or not he would be forthcoming with the information, if the speaker would ask the questions slowly and clearly enough for him to understand and how many questions would he tolerate before he screamed or said “no more”. Bryan has a saturation point where he will no longer stay tuned in and when you reach it, trust me, you will know. But on this day, for this woman, who in essence was somewhat gauging his disability, he answered questions easily, correctly and confidently. He is often very soft spoken when answering questions, although quite loud most other times, and for this interview his tone, voice level, were appropriate. At the end she said to me, “he was so well behaved”. Now, the real true mother in me was beaming with pride. I have taken him to dozens of these types of things, interviews, psychologists, speech therapists, etc. where he has not answered or provided an answer that was completely inappropriate. But, the inner comedienne, the inner autism advocate mom in me, was saying NOW you answer everything right? Now, when it’s ok to be “disabled” or where some modicum of judgment by this woman might put your paper on one pile (needs lots of aid) vs. another (pretty good, don’t worry about him) and now you have to be sooooo awesome. It’s just irony and of course the real mom snapped back and felt proud. We walked out, and as always, Bryan put his arm around me and said “I did a great job with the lady”. We got into the car and I took him to school. During the ride Bryan was somewhat quiet. I wanted to ask him some things but he is rarely quiet so I try to leave it alone. I took him to the front door of school and signed him in. I watched him walk away and thought to myself how far we have come, how he senses from me when something is important or when we are doing something for his benefit. He knows that if Mommy takes off work to take him to an appointment it means it’s important. He also knows time together on a Tuesday morning is special, just like him.

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3 thoughts on “Timing is Everything!

  1. Andrew Henschel

    Really beautiful; just like you!

  2. JUDYHARVEYG@aol.com

    Dear Jane, I am so proud of you and your children. You put a lot into them (everything), and they give back love and kisses and smiling faces (most of the time). Remember,Pop…..Love finds a way! Mom.

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