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.

Salsa ADHD style

Ok, so this is what ADHD looks like in our house today. My 11 year old (adhd) comes home from school with a random kid I have never met (or even heard of) before. They proceed to kind of "collect" kids from around the neighborhood to go to the store to buy ingredients for salsa. They come home and I am making dinner so I tell him they can't make salsa in the kitchen right now. Later as I am putting the little kids to bed I see a huge tarp on the floor in his bedroom with salsa ingredients all over the place (on the floor!), in various stages of being cut up cut up (onions, tomatoes, peppers, etc.) There is also salt all over the place. Mind you, only some of the ingredients are cut up, others are randomly on the floor in one piece. I yell "What is the deal in your room?!" and the repsonse is "Oh yeah, I forgot we were making salsa; we only got halfway done."

My non-ADHD mind wonders the following:
1. Who is this random kid and why do you need 5 kids to go buy salsa ingredients?
2. What makes you think it is OK to make salsa in your bedroom?
3. How can you "forget" you were making salsa?
4. WHY are you making salsa when you don't even like it?

His mind is so active, it wears me out. He starts things and never finishes, he forgets what he was doing and what he was talking about, he has friends I have never heard of and seems surprised I don't know who they are, he gets random ideas in his mind and doesn't think through the consequences of his actions.

He has friends of all makes and models, he thinks outside the box, he is never boring, he is full of energy - both physical and mental, if there is an obstacle in his way, he will find a way around it, nothing is "too hard" if he really wants to do it.
Some people think ADHD is a gift. I agree.

Bullying...

This week I have finally experienced what it is to see your child bullied. I have seen my children left out, ignored, overlooked, and feelings hurt. However, I have never seen any of them actively bullied until this week.

Of course it was Alex who was the victim as my other kids are much more able to stand up for themselves and Ben in particular would be likely to kick someone's ass who gave him a hard time.

Alex insisted on playing lacrosse this spring, I think mostly because Isaac is playing and he really looks up to his older brothers, especially Isaac. So...I was a little leary, lacrosse being a somewhat aggressive, difficult sport and probably not the best choice for a young child with motor planning and sensory processing difficulties. However, he REALLY wanted to play and I didn't want to discourage him. And of course, there are several boys on his team who are the uber-athletic type (even at age 6) and have no patience for kids who are less, ahem, athletic. To be fair, Alex has done better than I anticipated. He certainly does not stand out as the worst kid on the team. However, when kids pick on him, he responds inappropriately which makes him more of a target. More socially aware kids would keep their mouths shut or just tell the kid to shove it. Alex is more likely to lecture or cry. Can you say "Target"????

So at practice, I began to see one child in particular shove Alex or whack him with his lacrosse stick each time he came near. Then I heard the taunts. And the way the other, less dominant kids started staying clear of Alex, not wanting to be associated with him and therefore the target of taunting as well. Alex has taken it pretty well, considering. He says he still likes lacrosse, just not his team.

Now he wants to play tackle football like his older brothers. This may be wrong on my part, but I insisted on soccer, for now (he has played in the past and it is a much more civilized environment for young children). I (not Alex, me!!) need a break from the bullies and their parents who do nothing to stop it. So...this is one of those parenting dilemmas that is really a judgment call and I may be really screwing it up. But I am opting for a peaceful soccer season and putting off football for at least another year. Alex is one of those kids teetering between the special needs world and the "normal kid" one. He doesn't completely fit into either one. So I feel the need to find the soft spots for him for at least a little while longer. Whether this is "right" or "wrong", I don't know, I am going with my gut on this one!!