I’d like to use one of my lifelines

Sometimes just the sight of your own child can take you over the rainbow. We had scheduled another whirlwind visiting day weekend. We flew up to NYC on Friday and got to Bryan’s camp around 2. When they went to get him and this tall, slim, teenager appeared saying “I can see your phone” I was all tears and smiles. The sensory experience of your own kid is exhilarating. His smell, the feel of his hair, his voice… As predicted, he asked me to sit in the back of the car with him and we drove to our hotel, about an hour away from camp. We dropped our stuff at the hotel, same place as last year, a terrific Inn halfway between the boys camps. For us, it was a great retreat, nice, clean place, great adjacent restaurant and bar. They have live music on the weekends and the food is terrific. Camelot Inn in Clarks Summit, PA. For Bryan, anything familiar minimizes anxiety, and well, clearly that helps us too. We went to the movies, IMAX theater, to see Pacific Rim; Bryan’s choice. Let’s shatter some nice autism stereotypes here. The screen was huge and bright with sick special effects and about as loud as anyone could tolerate. Stereotype one: Kids with autism cannot tolerate loud noises or bright lights. Yep, not an issue for Bryan. He really does not have sensitivity to sound, light or texture. Yay. We took him shopping to buy candy, books, and what I like to call crap to bring to visiting day. We had “demands” from Jason but Bryan only wanted a few things, he does not care at all about stuff or things. Stereotype two: Kids with autism are cold and are not interested in socializing. Bryan could not get to my ipad quick enough. So what did he want to look at? Not games! Two things interested him. The first was facebook so he could look at photos of his teacher and our family and friends. He looked at a photo of his teacher that was taken the day of his Bar Mitzvah and he said to me “Ms. Wilton looks so pretty for my Bar Mitzvah”. I smiled and gave him a huge kiss. Then he went to Vimeo to watch his Bar Mitzvah. So funny!! We ate dinner outside listening to this great band play Dead songs and we danced. If that isn’t socializing, what is?
He had anxiety when he woke up and puked. He then managed to pull it together until about lunchtime. This is huge progress from last year where he could not relax for five minutes the entire day. We got to Jason’s camp around 9:15 and had a tearful yet joyous reunion. Jason always cries the most when he sees Bryan. Their connection is deep and great to witness. We walked Jason to his bunk and I kvelled as I saw people greeting him with warmth and affection. He had a new found confidence, a spring in his step that comes from social acceptance. I had this great feeling as the day unfolded of affirmation that sleepaway camp is the right move for these kids. They each are getting things from their experiences they cannot get at home and they are maturing and developing in their own ways. As a parent, the validation of your decision making is empowering.
On the drive back Bryan was virtually silent. A few times he asked about pickup from camp; we had gone over this several times earlier in the day, but not the 70,000 times we typically need to go through in years past. Stereotype three: Kids with autism cannot control themselves. Bryan was inside his head, keeping his emotions in check and facing the challenge ahead. I wanted to talk to him and ask him things but I was also enjoying the quietness of him. It is so ironic that although I love to hear him talk and love to have any snippets of conversation but his silence was the thing that I appreciated from him on the ride back. Gradual changes, gradual developments, progress. We got back to Bryan’s camp at the tail end of their visiting day. We took Bryan up to his room and met his bunkmates. He is not really in a bunk, more of a dorm room and it’s him, two other boys and a counselor. The other boys greeted us along with some counselors. Bryan was teary but held it together. I thanked the counselors for all they do for him and one sweet young female counselor said to me “we love our jobs”. My heart almost exploded. We love our boy, but when someone else can appreciate him for who he is, and wants to spend time with him, we are overjoyed and grateful. As my friend Lori said, “enjoy visiting day, as you know it’s the best.”

Every picture tells a story

RodI admit it, I am a little bit obsessed with looking on the boys camp websites for photos. I’m not alone, right? You do it too, yes? So here’s the thing about the pictures, they are very revealing and often tell you a lot more about how your kid is doing than a letter, a phone call, or an update from the group leaders.
What I noticed initially about Jason’s photos was that he was alone. He had a big smile but he was by himself in the first few photos. My radar goes off, is he just smiling for the camera or is he really having fun? Ok a day or so later more photos where he was in the “thick of it” with other kids, familiar faces from last year, and looking into it. Ok, check, one kid ok. We also spoke with him on the phone over the weekend and he sounded confident and happy. Yay!
Now looking at the photos of Bryan, well, that’s a whole different story. There is a layer to this that I cannot pretend doesn’t exist. He doesn’t smile well when told to, but his natural smile is great. We have seen both types of photos but overall he does look well, lost some weight, hair growing in, etc. What is not so obvious and what hits me when I look is, gee, Bryan is not a typical boy. I think to myself, he is way more with the program than a lot of other kids, and then I look at his photos and the other kids photos and they are the “same”. So I can’t trick myself, you see, into thinking he is outgrowing the disability, or that he is really not like the other kids. I’m shameful with these thoughts but when you see the photos, they don’t lie. As with every thing with autism, I am always lulled into a false sense of security by progress and maturity, and then blasted back to reality by something unexpected or unforeseen. It is the demon of still holding onto the dream of a typical child while accepting and loving your child with a disability. Guilt, guilt, guilt.
Tomorrow Bryan is going on a camp trip to Dorney Park, Amusement Park and Water Park in Pennsylvania. I called to find out some info about the trip. The camp owner told me he is really blossoming. Such a wonderful word, makes me feel so hopeful, so proud. It’s just a day trip but we did check to see how they staff the trip and the ratios of campers to counselors. 2 kids per counselor plus group leaders and a nurse. Camp LeeMar knows how to do things right. A little relief here and excitement for Bryan who loves water parks and thrill rides. Ironically enough, I’m already looking forward to the photos.dorney

Jumbo Shrimp

Is it bad to say you love oxymorons? An oxymoron is defined as: a combination of contradictory or incongruous words. Is it in some way an oxymoron that you love something that sort of doesn’t make sense?  There is something so humorous about these expressions that don’t make sense. No matter what I do nor where I go some things just do not make sense to me. Here are a few tidbits for you:

  • Having a conversation with a person who does not have a special needs child telling you what it’s like to have a special needs child. Um, what? I got a call from someone who is interested in getting some assistance for a charity. In the course of conversation this person is telling me about resources that special needs children usually need. I know you don’t have to have a special needs kid to empathize and I am appreciative of anyone who wants to raise money for these events and programs. However,  I think it all stems from the delivery, the know- it- all type of tone used during this discussion.  I get people don’t know what to say, but then don’t approach the conversation from a place of knowledge, approach from a place of  raising awareness or good intentions. I asked,” do you have a special needs child?” “No I don’t but a friend of my friend’s cousin’s daughter or something to that effect does.” In my head I’m thinking “be nice, be nice, be nice”. I was, but it was a struggle.
  • Went to a medical professional recently. This person told me their dog is detached and  not affectionate.This person said,  “My dog has autism.” Really? Really? Your dog has autism. I’m sorry but dogs don’t have autism, my son is beyond affectionate, and there are so many other things wrong here, don’t get me started. Can you say stereotype?
  • Went to a support group recently for parents of children with autism. The two coordinators were fabulous, knowledgeable, encouraging, and caring. One parent was so annoying and tried to monopolize the whole group. There is one in every crowd after all. I kept thinking, I need support to deal with this woman from the support group. Luckily my friend, and partner in crime, and I, went out afterward to decompress. In hindsight the two of us sitting at a bar may have been all the support either of us needed (note to self).

I guess if this blog has to have a point it’s just that things that would seem to make sense in everyday life do not make sense at all in the autism world. Why do people feel compelled to act like they know more than you? We have a friend that once compared our son to a puppy. People, WTF? Life is challenging enough that we don’t need insensitive comments from those we trust and care about. I know people don’t always know what to say about a special needs kid, but I can bet we all have a fairly good idea of what not to say. It’s like anything else. If someone has an illness or problem that you don’t have you can empathize with them without coming off like a dope.
So here are some suggestions for difficult situations. Not universal, but may keep you safe in a  minefield:

  • Hey, I don’t have a lot of experience in what you’re dealing with, but I’d like to help. How can I help?
  • I am thinking of you and I’m here if you want to talk or have a drink or just need someone to listen.
  • Can I babysit? (ok this is definitely more personal, but that’s really a good one if your kid has autism)

And, in keeping with my theme here, I’d like to offer some things you are better off not saying, at least not to me:

  • I don’t know how you do it, you have so much on your plate.
  • I could never do what you do.
  • Your child seems pretty good.
  • Is your child high functioning?

Why does this matter? It doesn’t unless you want to show compassion or support someone you care about. Same difference!oxy2jpg