First Hair Cut
His first SOLO hair cut that is. The Younger found a pair of scissors and had his way with them. Hard to tell in the picture but it was about an inch long. Fortunately it was off the top of his head and not the middle of his forehead (like I did when I was a kid). So you can’t really tell there is a lock missing.
Training for Camp
We have a bad habit of springing things on the kids. Usually we might say, guess where we are going tomorrow (sometimes it is today)? It might be a birthday party, it might be the mall, it might be a doctor’s appointment, it might be a road trip, it might be flying on an airplane. The Younger gets a little anxious we’ve noticed (much more than The Elder who typically gets over the change 2 minutes after we’ve explained why we are going where we are going).
Well, next week being The Hub’s birthday and that it coincides with a big 17 mile trail race that he likes to do, we decided to make it a family camping trip. The Hub and I hadn’t camped there since before eric was born so I thought it would be exciting. In telling a friend about the trip she tells me a little story about her friend who brought their kids 2 states away to go camping and the kids hated it! They had never been camping before and knew after the first night that they wanted to go back home. So with that new information, I decided we should only stay one night (even though it is reserved for 2 nights) and that we might want to get a separate tent for The Hub so he can actually sleep the night before the race.
At this point it still didn’t occur to me to tell the kids of the plans. I don’t know why, maybe habit? Well, last night The Elder made a comment about making a tent and referencing a tv show where I suppose they were camping. Hey, thanks for the reminder, son! So I had the bright idea to pitch the actual tent for them to “camp” in overnight. Well, it didn’t fit in The Elder’s room, so we moved it to The Younger’s room and it fit, but the poles didn’t really. Somehow we got the poles strung through and the top of the test was about 2 inches under the ceiling fan. They thought it was the greatest thing. Even The Younger got excited about putting his blankets (gimmes) and pillows in the tent. Then getting books for us to read them for bed time. BUT when it came time to sleep, The Younger pitched a fit. He did NOT want to be in that tent. He kept saying over and over “eh-kick’s woom, eh-kick’s woom.” “You can sleep in The Elder’s room if you want, but The Elder wants to sleep in the tent.” Cue hysteria.
Don’t know what daddy did, but he got The Younger to sleep in the tent. And here he is at nap time today. Hopefully by Friday night, he will be comfortable enough in the tent, that his hysteria will just be from the chilly night air, no night light, and strange outdoor noises.
What about Jenny?
I received a lot of emails and phone calls from friends and family regarding the Oprah show that featured two celebrities whose children have autism. Unfortunately I didn’t watch the show. (frankly, I forget sometimes that there is television outside of PBS and Nick Jr.) But I did read the article at Oprah.com and here was one of my responses to an email:
I went to Oprah to read about this. It’s hard to get something really useful from people whose children have Autistic Disorder because the “symptoms” are so different than Aspergers, yet so many are the same. I usually read about everything though. I have one blog that I keep up with and her 10 year old only says words and phrases at a time and even the number of phrases are limited. I just can’t relate to that, but she does have great topics of discussion because she is a phd and writer for an online mag.…The controversy with what Mccarthy advocates is on whether Autism is a disease or illness as opposed to a disorder, and they are trying to “heal” them. I think of it as “adaptation.” Obviously it doesn’t go away or The Hub wouldn’t still have issues. He may just be mild Aspergers or right outside of the spectrum, but his disabilities are real and it has been hard for me to not get frustrated with him, it’s more frustration with myself and my patience. It’s harder when it is an adult. But I think that The Elder will be able “adapt” better when he is an adult just from the fact that he is growing up in a generation that is a lot more aware than ours.
To add to that, something I was discussing to someone in person, was that it isn’t really fair to tell a child that he has been “cured” from autism. We have been told that there is no cure for Aspergers and I believe that. (I do believe that people with autistic disorder can improve their diagnosis to higher functioning) Why isn’t it fair? because we have NO idea what is really going on in their head because they cannot communicate well. So if we tell them they are cured, and then they wonder why they feel rejected or like an outsider or frustrated because they don’t know what to say in a new situation, that could lead to extreme things like depression, teen pregnancies, suicide, etc. often without any warning. However, if they know that they have autism then they have an explanation of why they are the way they are. The person still has a choice to either use it as an excuse or to use it as awareness to adapt to it.
The Hub and I use little scripts. We always have and we would just crack up at each other every time we would “reenact” a skit of some sort. But now I know why we did it. Not just to be silly, but we were in fact communicating. Crazy.
We started the gluten-free diet about mid-June about 2 weeks before The Elder’s official diagnosis, and I so have to credit McCarthy for my being aware of this, but after I read her post on oprah.com I connected the fact that since we was on the diet he started to talk a lot more and form complete sentences. I think it was about 6 weeks into the diet that he started doing that. I might have to check out past blogs to know for sure. The other thing I noticed was affection. The first time I noticed it was about mid August when he came out of church (I can’t rememer if it was choir or sunday school class) he ran towards me with open arms saying “mommy!” as if he was happy to see me. I had never really experienced that before and I was a little shocked and felt like a normal mom at the same time. I think he probably picked that up from The Younger who is very affectionate and huggy-kissy. But I can tell that The Elder is trying to express his own feelings, he may be using someone else’s method, but I believe that it is truly his own feelings. He has even improved in the “I love you” department. First, when we said I love you, he would say nothing. Then he would repeat us and say “love lou.” Now, as reported by The Hub at the end of the bedtime routine, he will respond with “I love lou, too, daddy” which tells me that he isn’t just repeating our words but is directing them to The Hub. (He still says “I love lou” to me. sniff. I’ll keep you posted when he directs it to me)
I think that is what I think will be difficult in this journey of Aspergers, especially with the early intervention. The fact that he will learn to interact, communicate, etc with the typical children make it really difficult to see a disorder in him. If you haven’t seen Mozart and the Whale, please do. It is really eye-opening to what Aspergers can look like in different people.
I mean if The Hub made it through to adulthood without a clue, then I think The Elder might have the same chances. But the bottom line is that I think it is so key that he understand his condition so that he can understand himself if he does have a meltdown which seemed to come from no where or if he does feel like he is the leading role in the production of Life and feeling like he is not living his own life, that he is different inside than what everyone perceives of him or if he can’t express himself very well, to not give up, etc etc. It is MY job as his parent to raise him to live with integrity to why he was put on this earth and NOT to make excuses because of circumstances. Tall order – but I’m up for the challenge….I hope.
