Autism Awareness

One of the great things about autism, and there are many great things, is the way other parents respond to your kid and the way you respond to their kid with autism. This week one of the families we know posted a photo on facebook of their son starting an internship at Sports Authority. I see this family every weekend and to see this photo of their son working in the community, understanding what a huge milestones this is, well you get the vicarious sensation of pride. I took Bryan to music class this morning and met a mom who has a 6 year old son with autism. She is working on a website for autism awareness and our friend and coordinator of the Parkland Buddy’s Sports program introduced us. We sat together and chatted for a few minutes. Her son was friendly and came over and said hi. Bryan was singing on the microphone, summoned me to come over and he put his arm around me while he sang. When I got back to my seat I told her how lucky I feel sometimes that autism gives you the luxury of having the kids grow up in slow motion. At almost 14 I am not “embarrassing” to Bryan (as far as I know) and he is warm and loving. She agreed and told me she wouldn’t trade it for anything. Amen. I have had that conversation with many Moms and the lessons learned from autism far outweigh it’s challenges. But, to get back to the point here, we were at soccer today, and one of the coaches, who is also a great friend, asked if we thought it would be ok to move Bryan up to the field with the kids that really play a game. You see, Bryan has typically been on the field but only with kids that are running back and forth and kicking, not actually playing. There is nothing wrong with where he was, but to me, the fact that the coach, another parent of a boy with autism, and friend, is taking notice of the maturity of our boy, well that just fills my heart. Reach for the stars Bryan, because you can catch one. He and his buddy went to the field and he did really well. While not scoring or dazzling anyone, he more importantly got the concept of the game and was able to hack it. The other parents that we sit with were incredibly supportive too. We all want our kids to make progress, to prove to us and the world that there are truly no limits on their capabilities. The Parkland Buddy Sports tag line is “No Limits” and today, more than any other day, it rang true to me.
During the game today I happened to chat with a buddy I didn’t know. He was waiting for my friend and her son to use the rest room, and he and I started to make small talk. He is a high school student and told me this was his 6th year as a buddy. I pointed at Bryan and said that’s my son, and he said “oh I know Bryan”. He explained how much he has learned from the program and how much he really enjoys the kids, their families and being part of something so special. He also told me he knew Jason. He said Jason told me he can be a buddy because he’s “basically a buddy all of the time”. I told Jason this a long time ago and I guess it stuck. The boy, whose name is Bradley, went on to tell me about how he watches the kids change and grow and he likes to see how they learn. You see it’s everywhere this autism awareness thing.

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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.