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….
This is not a newsflash. You need to own it, your own bad behavior or at least my own bad behavior. There is really no good excuse for being short tempered with your kids. They don’t deserve it and no amount of telling them you are sorry or that you are stressed will work. Kids, like people, do not respond to what you say, they respond to what you do. I feel like a perpetual Nike ad, Just Do It!!! The tricky part really is how this applies to Bryan. For Jason, if I am stressed or angry or anxiety filled he will ask me, “Mom, what’s wrong?, why are you sad or why are you mad?”Sometimes the topics are too mature for him, but if I give him a general idea of what is happening, he will give me a hug or just be a little more sensitive. I can say to him, “hey J, I need a little more cooperation and patience from you right now” and he gets it and tries to comply. Bryan just says things like “you’re frustrated with me” or “everything will be ok”. When I hear Bryan say “everything will be ok” I want to barf. I know he is self-soothing and it means that the stress level has tipped the scales. You can tell your kids do as I say not as I do, but they will always do what you do, so behaving like a stressed out lunatic is some seriously poor modeling.
Spending time with the kids is huge. And I don’t mean existing in the same house. When I get home I hear Jason wanting me to do something with him and Bryan wanting me to do something else. It is always a struggle to find time to give each of them attention in the way they want it; but the message is key, Mommy, give me time, love, play with me!! The lesson, which for some reason I need to keep re-learning(is that a word?) is that you need to do something with each of them, even if it is only 15 mins, doing what they want to do. Sounds so simple, but at times execution or taking action after a long day of work and a pile of stress is the toughest thing of all. Time to dig deep and remember that all of this behavior that you are exhibiting whether on purpose or not is all being tracked by these kids as if it were an app on your phone. The data is in storage and can be retrieved at any time.
This weekend they are leaving for sleepaway camp. I am always annoyed by parents that complain about packing a kids trunk. What can be better than putting your kids precious stuff in a big bag that will enable them to have an amazing summer? I love ordering labels, I love labeling things with their name and I love the idea that when they open their bags they will know that Mommy and Daddy made sure they have what they need. I have written my first letters to them today. I like them to have mail when they arrive. I am careful not to say I miss you and I love you too much, I don’t want to stir up homesickness. I will write again tomorrow. I tell them both that I will write every day and I always do. I guess that’s the point, actions speak louder than words…
The good news is that it only takes one good thing to lift my spirits. On Thursday when I got home I saw in Bryan’s backpack his scores for his Florida Alternative Assessments. Bryan does not take FCATs which are Florida’s standardized tests. There is no point in him taking them. He is extremely bright but if he had to answer the questions in the way they are asked he would fail miserably. After weighing our options a few years ago we decided, why put him through that? Why set him up to fail and get stressed out? Don’t get me wrong, a kid always needs a reach, but there is truly a difference between working hard to achieve a goal and setting an impossible goal. So when I looked at the scores last night to see how well he did in Math and Reading, I was elated. You see when your kid has autism, most times when you get test scores, you need to brace yourself like an earthquake is coming. You must also brace yourself for all of the disclaimers about how the test is not really for him, he is not allowed extra time, blah blah blah. But this time, the scores were great and I was grateful.
Next week is the last week of school. I need to remind myself how easily Bryan transitioned to middle school and how well he did all year. Bryan is gearing up for camp, not in the same way that I am literally gearing up, his is clearly mental preparation! He used to freak if you mentioned camp like he was being sent away, but as it gets closer we are talking about it more to get him prepared to face it. He is quiet about it now, like the calm before the storm. You may think, why send him to camp if it stresses him out? Like me, Bryan has anxiety with the anticipation of things, but rises to the occasion once there. It is the fear or anxiety of separating from us and our home that makes him tense, not the actual camp. Once he is anywhere he adapts really well and does great. Just as I’m writing this I’m thinking about how typical that is, and how in many ways he has grown. I am looking forward already, if you can believe, to the visiting day Bryan. Last year he had lost weight and was so happy to see us and to see Jason. How mental is that that I’m looking forward to a family reunion while everyone is still home? I guess it’s just nice to think about the joy of watching your kid stretch their wings a bit and then getting to see the results.
Yesterday I got a notice from WordPress that it’s my two year anniversary of my blog. It’s hard to believe I have been writing for two years, but I have really enjoyed being able to express my frustrations, joys and just the journey I’ve been on with my family. I intended to write just to give myself an outlet but it really has been way more than that. I have received so many comments from people and the connection has really helped me cope at times. I am always thrilled to find readers or followers that are unexpected and I appreciate everyone’s interest in our crazy lives.