My blog is very personal. I write about my family and the impact of autism on us. Most of the time I try not to think about the readers or whether or not the information I’ve provided is appropriate for anyone in particular but hope my candor is appealing. However, because autism doesn’t look the same in any two individuals, I am thinking about some of the more generic lessons I have learned over the years and want to share them. I find that when the boys are going to camp always triggers reflection and gives me the mental space to explore my near and far feelings about having a child with a disability. At times I do not even think of Bryan in this way anymore. He is just Bryan and this is his life and our lives and you just do what you have to do. Then there are times when I think about the future and preparing him and it hits me all over again.
Some of the biggest lessons I have learned so far are the following:
- Push your child to their fullest potential but don’t set them up for failure. I think it’s ok to have your child reach for accomplishments, but I don’t think it’s ok to raise the expectations so high they cannot meet them. How do you know where the breaking point is? You will know, they will let you know in their own way. For example, we wanted Bryan to have a Bar Mitzvah. We knew he could do it and legitimately read enough Hebrew and make a brief speech. However, we knew that putting him into a traditional Hebrew School or having him do the entire service as a typical boy would do would be too much. It’s kind of like Goldilocks and the 3 bears, somethings too big, some too small, some just right. Not brain surgery, but still requires thought.
- Never give up on a good idea. If you try to teach them something and they cannot or will not learn it, doesn’t mean it’s not a good idea, they just might not be ready yet. For example, potty training, riding a bike, learning how to make a phone call.
- Love your kid how they are, not how they aren’t. Bryan loves to walk in store with his arm around my shoulders; sometimes it’s uncomfortable or may seem strange to others. He likes it, he’s taller than me, I dig it. I always go with it.
- It’s important to be consistent as parents, but you don’t have to be the same. Earl and I are able to get different things from Bryan but we have the same message of respect, good manners, and deep affection.
- Never ever listen to a doctor, therapist, etc. over your parental instinct. No one knows your kid better than you, and guess what? Most doctors/therapists etc. who deal with autism and are really interested in helping know this too.
- Seek out other parents! Best advice ever received was from other parents who have dealt with the same issues. They have done the leg work, they will give you the real deal, and it’s free!!
They both left for sleepaway camp. Jason is scheduled for 6 weeks but has the option to stay for 9 and Bryan goes for 7 weeks. For Jason, it is just a rite of passage, something most Jewish kids experience growing up; but because his life is anything but typical or at least atypical from how Earl and I grew up since neither of us had a special needs sibling, this experience is even more significant. We are very proud how Jason openly shares with other kids his brother’s differences and how proud he was to see him last visiting day even though Bryan was anxious and crying. However, for this time in Jason’s life he can just focus on his socialization, his ability to make relationships, many of which last a lifetime, and just let loose. Saw the first photo of him on the camp website and I was relieved and excited to see him looking so happy.
Sending Bryan to sleepaway is a whole different matter. This is his 4th summer at camp, but only the second summer at Camp LeeMar. Their program is 7 weeks and it includes speech therapy and occupational therapy. For Bryan it’s hard to know exactly if this is the right fit. He seemed to enjoy it last summer and we received good reports. Earl brought him to the camp bus on Saturday mid morning. He said goodbye like a champ and got on the bus to go. Earl was emotional at the maturity of Bryan. Bryan can really surprise us at times; or rather I should say he can really rise to the occasion. What’s interesting to me is that we spend so much time working on his verbal skills when it’s his nonverbal skills that surprise me the most. It’s the control of his mind, body, etc. that leaves me in awe; perhaps a bright foreshadowing for us. I called the camp Saturday night and they said he was doing well, slipped into his old routine from the summer before with ease. We were thrilled to hear this, but not shocked, once he knows a routine, he embraces it. On Sunday night I decided to call again to check. One of the owners answered the phone and told me Bryan is “delicious”. Now all Moms know that their kids are delicious, but when someone else tells you this, well it’s like Fourth of July fireworks!! His group leader got on the phone next to say how much he had matured, how much more socially appropriate he was, and how much more verbal he had become. The trifecta of accomplishments for a kid with autism. Earl and I are so proud of him. I didn’t call last night. This is big for me. I have been checking the websites for photos and found one for each kid. Allll gooood. They are doing their jobs, smiling and having fun. Ahhhh….