Yellow Card

Today Alex got a "yellow card" at school. This means he was given a warning. When you get to red there is a punishment. I am probably the only mom at my kids' school who was happy about a yellow card. He got the yellow card because he was playing tabletop hockey with another boy during classtime. That makes me ecstatic! Because he was playing with another boy. Because he wasn't obssesed with following the rules (as he is prone to do). Because he was behaving like a typical 7-year-old boy. I couldn't let him know I was "happy". But when he got choked up telling me about it, I let him know that it was OK and I wasn't angry. Because I know it is not likely to happen again. He is proud of his "green card" streak. He is more obsessed with things like that than is normal for a 1st grade boy. So although most moms might be a bit disappointed (as I always was when my older boys behaved that way), I am very proud of that yellow card. And we talked about how the yellow card doesn't take away from all the green cards he has gotten. It's funny how your focus changes when you have a child like Alex. I celebrate the everyday boy things that most parents don't give a second thought to. Yay!! He played tabletop hockey! And he didn't completely fall apart about the yellow card. He wasn't happy about it but he was able to handle it.

Humming Along

I haven't posted in quite a while, I know. I don't want to jinx anything. Things are going quite well for Alex now. He has met all his IEP goals FOR THE YEAR already, at the half-way mark.

Here is what his special ed teacher wrote about his Communication strengths/weaknesses: "A has made some new friends this school year. He plays with classmates, shares, and has conversations with them. A is respectful to his teachers and peers and can work cooperatively in a group. A asks thoughtful questions to gain clarification during class discussions. A's oral language skills are on grade level. He continues to expand his listening and speaking vocabularies and adapts his oral language to fit the situation." NOTE, THERE ARE NO WEAKNESSES noted!!!!

Comments for Behavior/Social Skills: "A's behavior is age-appropriate. He no longer uses a behavior chart to monitor his behavior, and can follow directions and complete classwork. A is able to word independently and listen attentively. He contributes to group discussions and asks thoughtful questions."

I mean, gasp, so many phrases here NEVER used to describe Alex before: "made some new friends", "has conversations", "can work cooperatively in a group", "ORAL LANGUAGE SKILLS ARE ON GRADE LEVEL"!!!!!!!!!!!! "behavior is age appropriate" "able to listen attentively"

This is a child who was woefully behind in language just few years ago. Who could not tolerate being in groups, whose behavior was ALWAYS described as immature, and who needed an aide or special ed teacher to keep him on task.

OK, yes, he comes home and stims (sensory seeks? Are they the same thing? I never get a straight answer for this) for about hour every day. In the warmer months it is an hour straight of trampoline jumping. Now it is dribbling a basketball around the house while jumping around which some days drives me to the brink. But I grit my teeth because I know he has worked hard to hold it together ALL DAY at school. I know some days a recess he plays on the slides by himself and that some days he feels sick at lunch because of the smells. BUT he is still making tremendous gains.

For the first time since he was a baby, I am more concerned about one of my other kids than I am about him. My 7th grader is really pushing the limits these days. I thought this behavior would occur closer to 14 (he is 12.5). But we are in the midst of some rebellion and some bad decision-making. Now that my youngest is 6 and we are safely out of the sometimes difficult toddler/pre-school years I must gear up for adolescence! I have one right on his heels, turning 11 next month. The mouth, the eye-rolling, the word "whatever" which I now truly hate, the texting, the secret little jokes, the homework that is not done, etc. Why don't I feel ready for this???

On a side note, this same 7th grader did fantastic at his wrestling tournament this weekend. He won all 3 matches. His 2nd opponent threw up in the middle of their match and I was completely disgusted and rattled and wanted him to forfeit (the sick kid was not forfeiting) but my son said to me "Mom, it's OK. I want to finish what I started." and was not rattled by his puking opponent. Every now and then I see a glimpse of the man he will become.

Thanks to those of you who have inquired as to where I have been. Just busy and reading a lot of other blogs!!

Soccer Success

The school year is well underway and Alex is doing very well. His behavior and attention in class have not been an issue, he is doing fairly well academically and on the surface is interacting with the other kids. I say on the surface because if you really examine what he is saying and doing, he is mingling, not fully interacting. He flinches every time a kid comes at him unexpectedly and continues to have difficulty with big groups of kids. He has also started some strange behaviors like washing his face at school and hiding in the bathroom when it is time to get on the bus, even though I have confirmed with Isaac (my 5th grader who is a patrol and very protective of Alex) that no bullying is occurring on the bus.

Still, it is more than I had hoped for. The area where he has actually improved the most is organized sports. I don't care so much about how he is doing with sports, but I will take improvement where ever and whenever it presents itself. He is playing soccer this fall, after a very difficult season of lacrosse where some bullying (as discussed in a previous blog) was evident. When the soccer season started, he was clueless. He knew what team he was on, which was an improvement in and of itself, but that's about all I could say for his soccer skills. However, his improvement has been dramatic. He is now scoring goals at games and at one game was the high-scorer. He feels a part of this team and gets along with the other kids. He really goes after the ball with gusto and his confidence has soared. Except for the fact that the coach does often need to tell him things more than once (since he often doesn't process things the first time), I don't think anyone would know there is something "wrong" with him. In fact, this is the first time he has been on a team that I haven't said anything to the coach about his difficulties. Now, I do notice differences between him and the other kids...he doesn't mix with the other kids as naturally as a neurotypical child would, he takes longer to understand drills and instructions from the coach, he sometimes loses interest and stares off into space or lays on the ground during practices, etc. However, he does not stick out. Other parents have noted how "cute" he is. They think he is funny. There is no bullying. He is accepted. It is a breath of fresh air.

He has already told me that next year he wants to play tackle football, probably the most unforgiving of all youth sports. Good Lord, what do I do??!!

The Media and Special Needs

The media often gets blasted for all it does wrong - being too one-sided, only being out for ratings, showing too much sex, etc etc etc (I mean I could go on and on but you get the idea!)

However, this post is about what the media is doing RIGHT. And lately I have to say I have seen some really positive characters and shows about autism and other special needs. When I was growing up I don't remember there being shows with special needs characters. There was a girl with cerebral palsy on Facts of Life but she was only a guest, one of the girls' cousins, and wasn't in many episodes. The first show I can think of a special needs main character was Corky on Life Goes On in the early 1990's who had Downs Syndrome. As I recall they did a good job with his character. Then...nothing much for years that I can think of other than the occasional guest spot for special needs characters.

This season there is Parenthood which (in my opinion) has done a really good job of depicting a child with Asperger's. Max is intelligent, funny and handsome. However, he ignores greetings, obsesses about insects, and has meltdowns when his routine is disrupted or something unexpected happens. He has sensory issues like being completely undone by the bubbling sound from the fish tank in his classroom. He has trouble with sports teams. This show has also done a great job in showing the parents' reaction to the diagnosis and dealing with it on a day to day basis. When Max was diagnosed in the first season (last season) they were devastated and the wife implored the husband "Don't leave me alone with this." It was heartbreaking and very realistic. Then they realized they had work to do to help their son and rallied. This is all very familiar to me.

I also like The Middle's youngest child Brick. He does not have a diagnosis on the show (it is a 1/2 hour sitcom, not a drama) but he is definitely "autistic-like". He is funny and smart and not at all tragic. The mother does a lot of eye-rolling and sighing but accepts her son for who he is. In one episode the parents are intent in having Brick make some friends until they realize he is happy how he is and would rather be reading a book. Again, acceptance.

Finally, on my list is the new MTV (yes, really, MTV!!) show World of Jenks. In each episode, Andrew Jenks spends time with a different interesting person. In the episode "Can't Make Me Be" Jenks moves in with a 20-year old man who has autism named Chad. I think it was really well done. They showed what Chad does on a day to day basis (like going to school) and also showed the broader issues of autism like hyper-sensitivity to smells and sounds. In the final analysis, it showed that Chad really isn't all that different from other young men his age. He likes a lot of the same things, he is able to communicate fairly effectively (dispelling the Rain Man stereotype), and he is a funny and compassionate person. My hope is that many younger people will watch this show (because it is on MTV) and understand that people with autism are not "less" or tragic, but just need some understanding. Jenks demonstrates this well when he takes Chad on a road trip to Manhattan and quickly realizes it is a mistake when Chad is upset by all the horns honking, smells - in short, the total sensory overload. At the end of the show he finds a more appropriate place to road trip with Chad. This is reality TV as it should be. It's hard to believe Andrew Jenks is roughly the same age as the morons on Jersey Shore (which I admit I have watched from time to time - a little escape from reality!).

I have read there is a boy in a wheelchair on Glee and that Sheldon on The Big Bang Theory is a classic Aspie but since I have never seen either of these shows, I can't comment on them.

I'm sure there are other shows and examples, but to be honest I am not a huge TV-watcher so this is all I am aware of now. It's a great start.

Summer's End

School starts tomorrow for my little (and big!) guys. They will be in 7th, 5th, 1st and kindergarten. Alex starting 1st grade, and going to school all day, has me quite nervous but I have been doing my best to "prepare" him all summer. We have kept up with his sensory diet, started taking some supplements recommended by the DAN doctor we went to last spring (not many and they are based on the results of his blood and urine tests), worked on reading and math, and read social stories about the cafeteria, recess, waiting in line, and how to have an appropriate conversation with peers. We have talked about what his "job" is in different situations that will be new to him: in music class, he is expected to sing, in PE he is expected to listen to the "coach" and follow directions, at recess he is expected to find someone to play with and not jump around by himself, etc.

He has been practicing his play skills at the playground where Isaac has football practice. He and Sara play at the playground with each other and with other siblings and random kids who are there while Isaac is at practice.

Here's how you know you have a special needs kid: when your kid says to you "Mom, aren't you proud of me? I played with that kid!! I am doing a great job practicing for recess!" and you, the mom, have never been more proud of this small (HUGE!!) accomplishment other moms take for granted.

Therapy burnout

Alex has been in some sort of therapy since he was 6 months old. It started with PT for torticollis as an infant. He then began speech therapy at 18 months in his at-home early intervention program. I had no idea then just HOW LONG therapy would last. I was so naive, I really thought he would start talking and he would be fine. I had concerns but he was so loving, he smiled, he met his other milestones and I did not lay awake at night worrying. If anything, I thought maybe his IQ was a bit low and that was something that did not upset me terribly.

Here we are a few weeks shy of his 7th birthday and he is still in therapy. He receives OT and speech therapy. Over the years he has also had social skills group and RDI, but both of these were discontinued although we still follow the principles of RDI in our everyday life. However, we do not have the time or money to do EVERYTHING. And in case you are wondering, no, insurance does not cover these therapies. OT was covered for a while but only for a certain number of visits. I guess if you are not "better" in 30 visits, you are SOL.

Lately, I notice Alex resisting therapy. He does NOT want to go! I really can't blame him. Just how long is it supposed to go on? Forever? Because that is likely how long he will have problems with language and sensory processing - forever. Will I be dragging him to OT when he is 12? 15? 20? God, I hope not!!

I am waiting for some sort of "sign" that it is time to end therapy. I don't know what that sign is. Maybe the therapist saying enough is enough, maybe some dramatic breakthrough in language development or sensory processing, maybe a teacher saying "there is nothing wrong with him", maybe a sudden slew of new friends....SOMETHING! I think it is more likely I will need to listen to Alex himself. He is already making it clear he is tired of therapy.

What keeps me going back?? Fear, plain and simple. Fear that he will miss out on some new breakthrough or that stopping will be harmful in some way. Fear that his development will slow down or even stop if we end therapy. In short, he has been in therapy so long, I can't imagine him not going, not working, not being tested regularly, not having these therapists be part of his life.

I have spoken to the speech therapist about some updated testing on his expressive and receptive language "just to see where we are." I also would like to have testing done on his pragmatic speech. Perhaps these results will help me make a decision. The speech therapist is also going to work with him on his very ADHD-like impulsive questioning of strangers: he will ask people things like "Have you ever been to jail?" (of a grungy looking guy at the mall), "Why is your name on your shirt?" (of the janitor at school), "How old are you?" (of a very old man at the grocery store) "What is wrong with your legs?" (of a woman in a wheelchair). He does not go on and on about topics as described of children with Asperger's, but I think that might be preferable to the sometimes embarrassing questions he asks of complete strangers. If the speech therapist is willing to work on this then we can't quit yet....right?

I am full of self-doubt, not wanting to make the wrong decisions when it comes to my children's welfare. I can't help wondering if on this subject, Alex is far wiser than me...

SPD at the Beach

Last week we went to the beach. Let's jsut say Alex had, ahem, a challenging week. He usually does. The places we stay are too small. There are too many smells. There are too many people. There are no trampolines. There are no swings.

We do go for a walk on the boardwalk in the morning. He goes in the water and plays in the sand, but for whatever reason, it doesn't meet his sensory needs. Most afternoons, I would find him at the top of the beach in the really hot sand where you can't even walk without sandals, laying spread eagle on his belly soaking up the hotness. Just craving that sensory input. "Out of Sync" is just the perfect phrase, really it is!! He does well the day we go on the rides and fun houses with slides, ladders, rope swings, etc because he gets the vestibular and proprioceptive input he needs. That night he is talkative and relaxed.

The last night we were there he had found a piece of scotch tape and put it on his arm. For some reason it gave him comfort. Then if fell off and he lost it. A huge meltdown ensued. Over a piece of tape. This really is not like Alex. I was at the end of my rope and went next door to my parents' condo. At this point I felt like the kid who was losing it and I needed to take solace. It was time to go home.

I read an article recently by an "expert" who claims SPD is not real. I dare him to take Alex to the beach when we go again later this month. He strikes me as one of those experts with either 1. no kids or 2. only NT kids - although to be fair, I really know nothing about him. I did email him about his little article and of course got no response. Big surprise.