Debunking and decoding.

The thing about stereotypes is that there is some grain of truth buried beneath a generalization. There are people for whom the stereotype is a perfect fit, probably how it got started in the first place, but for the group described, as a whole, it’s just wrong. There are all kinds of stereotypes for autism. Each person with autism is different, so the stereotypes really don’t fit well. For Bryan I have learned that many of the common ones really aren’t applicable. Does this mean he does not have autism? Does this make him more high functioning than others? Nope. Bryan is not sensitive to loud noises. Last night we had dinner at the Cheesecake Factory with friends. The acoustics in the room we were in were so poor, I found it hard to hear anyone speak and certainly if you had any noise sensitivity you would have struggled greatly. Bryan and his classmate from school were completely un-phased by this noise level. Interesting, but not enough to get me to write a blog.

This past weekend the boys were with their Dad. I had planned to pick them up late afternoon to go to the aforementioned dinner. During the day I had made plans to take my Mom out to brunch and then have her spend some time with me going to Lenscrafters for my eye doctor appointment and shopping at the Boca Mall. If you are a Jewish mother and daughter, going to the mall to shop on a Sunday is as normal as breathing. My mom, however, has Alzheimer’s Disease and the purpose of our outing was not a fun day of shopping and sharing. Instead, I was trying to spend some time with Mom, give my Dad, the primary caretaker, a much needed respite, and to accomplish some tasks while the boys were away. At brunch my Mom was really struggling with eating and at this point we have no substantive conversation. Really, we have no conversation at all. My Mom is/was a very dignified, elegant woman. When she is with me I tell myself to protect her dignity, her long since passed self-esteem. My mom is/was a very proud, stoic person and as her daughter I feel it is my job, my duty in a way, to treat as she would want to be treated if she could take care of herself. It’s not easy, I will tell you that. Wrong, it sucks big time!! In any event, we spent about 3.5 hours together and then I took her back home to my Dad. He is struggling with this situation; it is really a mind fuck. Here is the person you love right in front of you, yet they are not them and are not coming back. Heartbroken is the only word that surfaces.

Ok so I go to pick up the kids. I must admit that although I am always happy to see them after a weekend apart, the very sight of them after this tough time with my Mom is like getting a Carvel sundae. Sweet and delicious, and exactly what you need after a salty meal. When we drive a little I can no longer hold back the tears. I want to shield them from what’s going on yet they are old enough to understand and participate. Jason was up front with me and was his typical loving and caring self. I always battle between showing them the upset, vulnerable, mommy and trying to keep it all in so they won’t worry. No one can hold the damn all of the time. Bryan, however, did not say a word as he was in the back seat focused on our upcoming dinner. After dinner we got home and after a few chores were done Bryan was sitting on the couch perpendicular to me. He said, “Mommy, I’m sorry you’re worried.” I knew exactly what he meant. I know and can decode Bryan. You see, while he doesn’t always say things at the moment, he processes slowly,  it comes out later. I got up and hugged him so tightly. Empathy. Yes, a boy with autism can show empathy. I was literally taken out of my despair and embraced by this small yet enormous milestone. If you have a child and they show empathy, you always feel great. But if you have a child with autism, well, another huge stereotype debunked.

IMG_2583

A letter to me.

You know all of the clichés; hindsight is 20/20, can’t look back, learn from your mistakes. I get it, no one knows what they don’t know, but it would be so great if you could just go back in time for some basic life lessons. April is Autism Awareness Month, so it’s always time to think about where we are on the journey now, as compared to when we first busted out our compass and started trekking forward. So what would I say to my younger self, the newish mom, absorbing and coping with all things PDD (Pervasive Developmental Disorder), then Autism? I think it would be pretty basic, but as most of us know the good stuff is always fairly obvious.

  • Listen with your heart. Sooo easy to get caught up in what others tell you. “you should try this” or “my kid did that”. Every kid on the spectrum is so different and most of these kids, particularly Bryan, have language deficits and cannot tell you exactly what they need or feel. Trust your mommy gut, feel your way through, it won’t let you down. If you know in your heart something is good or bad for your kid, go with it. My heart never lets me down.
  • Don’t judge. This is probably one of the biggest lessons I have learned. When you see a family struggling with their kid or if you see a kid acting up, don’t judge. I realize now that so many people have all kinds of personal struggles and each person copes differently. Just because it’s not my way, doesn’t mean I should judge that person. I have not walked in their shoes and vice versa.
  • Be open. Be open to new people, new things happening, new ideas. Be open to other treatments and therapies besides established medical protocols. I revered doctors growing up, and still do, mostly, but I learned that I am a smart person and just because you went to medical school doesn’t mean you know all. One little side note: if something looks like it’s too good to be true, it usually is…
  • Always show respect. When dealing with teachers, doctors, therapists, show them respect for their perspective, expertise,  and time. The old expression, you get more with honey than vinegar, rings true here. Each of these people interact with your kid in a different way and have different life and professional experiences. You don’t have to agree, you don’t have to take your kid back to that person, but even the  negative experiences have left me with some little nugget of learning. A very close doctor friend of mine told me a long time ago to see lots of different doctors. Each see different patients and you never know when something may trigger a reference or an idea for you. Autism is not black and white so things are always changing. You have to change with it and keep getting more info.
  • Slow down. I spent my younger years concerned with reaching goals. I still set and like to reach goals but with Bryan and with my adult self I realize the journey, the process, the pace, can be as important as the goal itself. I’ve said many times that raising a child with autism is like raising a child in slow motion. Things that typical kids achieve at a certain age don’t go that way. I have clichés for this too, it’s a marathon, not a sprint, but there is truth here. You need to make peace with the idea that your kid may not do things “on time” or at all, but either way, take a deep breath and enjoy him.
  • Acknowledge progress. Great story from yesterday. Perhaps this is what got me to blog anyway. I took the boys out to lunch with my mom and sister. Nothing swanky, just Toojays (deli/diner in SOFL). We have done this many times. Bryan was antsy in his chair and hungry and just a little off. Lunch was tense and then we left. Jason took Bryan swimming and all seemed a bit better. Around 4:30 Bryan was very agitated and hurt Jason. Bryan likes to dig his nails into us, clearly a sensory thing, and broke the skin on Jason’s hand. Here is where the good stuff happens. It was a little early for Bryan’s night meds but we encouraged him to take them. He did but I have learned that if he thinks you can get over his bad behavior, if you can acknowledge that something bad happened but you can move forward, he can calm himself down. I told him, “everyone has a bad moment. You now need to get over it and calm down.” I have also find that if I get even nicer, warmer, sweeter, he will calm down. If I get angry or upset, there will be a colossal melt down.Hmm, so am I acknowledging his progress or mine?? In any event, my younger self could’ve used this advice, although I have to say sometimes this is way easier said than done.
  • Open up. My parents are/were very private. Too private if you ask me. I learned that sharing with others helps others to share with you. Parents are the best resource for autism and by sharing my experiences I have had others share their experiences with me. Priceless, awesome, fantastic!!!  If you are an autism parent you will know that there is truly nothing better than another parent telling you the real deal on a therapy, treatment, school, etc. On Saturday I took Bryan to Golf Buddies. I started chatting with another Mom who I have known for years, but have not known well at all. I have watched her daughter at all of the buddy sports and she has seen Bryan. We talked nonstop for the entire hour. We tackled major issues, marriage and divorce, school, housing for our kids, etc. The hour flew by and when I left her I had that feeling of community, the feeling of “wow that lady is my peeps” kind of feeling. The warmth of that hour really inspired me to think about how truly lucky I am to have Bryan and all that goes along with him.