Musings on parenthood and "Parenthood"

Yes, I know it's been a while since I have written here. Why? Summer with 4 kids is the main reason. The other is that I haven't felt the urge to blog. Nothing much has changed. Alex continues with speech therapy and continues to do fairly well albeit with the challenges that have always and will always be there for him.

That's the thing about something like SPD, ASD, or ADHD. There is no cure, there is no "growing out of it". Sure, some behaviors improve but there are always new challenges to take their place. It is not like an illness or injury when you can look back and say "remember when..." and recognize your child has healed or recovered. It just is. We are blessed. Alex is doing much better than I hoped for back when he was a non-verbal 3 year old. He has a new friend that lives down the street. He is participating in soccer and is mainstreamed at school. I try not to think too much about the future because that is when I get overwhelmed. I see my older sons in middle school and how vicious kids that age are and can't stand the thought of my vulnerable son in that place. I try to take it one day at a time while getting as much help as possible for him now to lessen his vulnerability when he is 12 and 13.

As I have blogged previously, I love the show "Parenthood" for it's sensitive and realistic portrayal of a boy with Asperger's. However, I was cringing last night about a new storyline that seems to have popped up: adoption. One of the characters and her husband are hoping to adopt. The "latte girl" at her office is pregnant and said she is not keeping the baby. This prompted Julia (who is hoping to adopt) to mention to family members she wondered if she could "buy the latte girl's baby". I think? it was meant as a kind of sarcastic joke (which wasn't funny) AND I suspect this storyline will continue and "something" will develop between the latte girl and Julia concerning the baby.

I read that one of the producers (or maybe writers?) on "Parenthood" has a child with Asperger's and that is why they have done such as good job on a subject where so many other TV shows and movies have portrayed only stereotypes. I can only HOPE that there is someone on set who can give the same kind of sensitivity to adoption but so far it isn't looking promising. I for one will be quite disappointed if the storyline devolves into a made-for-TV-movie type stereotype of adoption. Keeping my fingers crossed...

Goodbye OT!!

Alex has reached a milestone: he was discharged from OT a couple weeks ago. He went to OT for sensory integration which will always be a challenge for him. His goals were to stop chewing everying, to be able to tolerate smells better, to get a handle on his sensory seeking (the constant jumping and spinning, etc.), and to strengthen his core. (Many kids with sensory processing disorder have weak cores, including Alex.) He also worked a lot on motor planning activities. He was often unable to execute complex motor activities due to poor motor planning. It was interesting to watch him and Sara on playground equipments. She would be up and flipping around in seconds and he couldn't seem to figure out how to do anything.

The discharge does not mean he no longer has SPD or that his sensory issues are resolved. Far from it. We still have plenty to work on at home and he will likely always have issues with sensory processing. However, he has met the goals we set for him when therapy began and he is learning how to compensate for some of his difficulties. For example, instead of jumping mindlessly on the furniture or running back and forth between furniture pieces and slamming himself into them (to get needed sensory input) he has learned to jump on the trampoline or ask to swing on the neighbor's swingset. These are more socially appropriate ways to get his sensory input. He has stopped chewing on all his clothes, sucking his fingers and biting metal objects. We have learned that soda, with its carbonation, gives him the oral input he craves. Not that I love giving him soda, but it is better than having a 7.5 year old who sucks his fingers all day long or chews on metal fences and bleachers. We have learned that the therapeutic listening CDs really calm him, that doing wheelbarrow walking and therapy ball exercises will keep his core strengthened, and that word searches and puzzles help with his visual processing. We continue to work on these at home as well as other exercises and activities.

He continues in speech therapy to help with pragmatic language, otherwise known as social language. Recent testing indicates this is still a problem for him. He particularly struggles with inferencing. In other words, he can't guess what is going to happen, or what someone means unless it is said outright. Even in books for much younger children, he cannot guess what will happen next or tell why someone is doing something unless it is spelled out. He gets humor and sarcasm which is a huge plus. He is actually pretty funny and jokes a lot. I feel lucky about this. Many kids with pragmatic language problems don't understand humor and/or sarcasm. He understands that words can have more than one meaning and that some expressions can't be taken literally (for example: I was laughing my head off.) Again, many kids with pragmatic language disorders don't understand these types of expressions. He doesn't use expressions like these or speak as naturally as a neuro-typical child, but he does usually understand when others use them. Often when he speaks, it sounds like he is struggling to get his words out. He often whispers to himself and repeats words. These are issues that don't seem to be resolving despite 6 years of Speech Therapy and perhaps they never will. I am OK with that. I am so thankful he is able to fully express himself and carry on a conversation with me as there was a time when it didn't seem possible.

So...goodbye for now OT. Can't say I will miss you!!

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.