Observations in the new year

Some updates:
1. Vision therapy is recommended as Alec scored very low on many of the visual tests. We are holding off till we can cut back on OT. We simply can't afford to add another therapy right now and Alec is pretty burned out too. He did get glasses though and says everything "looks bigger."

2. Stimming has increased since he has been unable to go outside as much. I can't wait for spring. He is fine when someone engages him but left alone he will jump and crash.

3. OT now says he has dyspraxia, a dx he has never been given before. He did meet his gross motor milestones on time but he is doing basketball this winter and there is a definite difference between him and the other kids. He is just not able to do 2 things at once - he can run and he can dribble, but he has a hard time running and dribbling at the same time. He has a hard time with jumping jacks. See a pattern?

4. I am planning to ask his pediatircian to run some genetic tests on him - specifically for Fragile X. Although most boys with Fragile X have MR (and he does not), some only have learning disabilities. Other symptoms include autistic-like behaviors, SPD, and large ears, all of which he has.

As much as I would like to believe (as we were told by both Kennedy Krieger and a local neuropsych) that Alec's main dx is ADHD, I just am not buying it. I know there is a link between ADHD and ASD - maybe even a genetic one - but contrary to what others think, I don't think ADHD is on the autism spectrum. Having an older child with a dx of ADHD gives me some means of comparison and here's the difference.

Brandon and Alec are both hyperactive - but Brandon's hyperactivity is usually present when he is expected to "do" something like homework. Then he is fidgeting, getting up, humming, etc. At other times, although often hyperactive, his movements have purpose. Alec stims. Big difference.

Brandon and Alec both love video games (a favorite among kids with both ADHD and ASD). Alec prefers to play alone. Brandon almost always plays with friends, or with friends online on XBox Live (so he is talking to them), or as a last resort, with Ian (my 9 yr old son) or their dad. He rarely plays alone. Part of this is due to age differences, but not all.

Brandon and Alec both have wierd food aversions. However, Brandon will choke down what he doesn't like if given an incentive. Alec actually dry heaves at the table if you even BRING cooked vegetables to the table. No amount of incentives or threats will get him to eat what he doesn't like. Smells really bother him, even the smell of gum.

Brandon and Alec can both be "innappropriate" at times. With Brandon, it is mostly just his big mouth with his friends, but with Alec you never know what he will say or who he will say it to! Often there is a big cringe factor involved.

Biggest difference: BRANDON IS SOCIAL. ALEC IS NOT. Both my older boys are social - they hang out with their friends nearly every day. Brandon is a clown oftentimes and somewhat immature but other kids like him and he likes them. Brandon loves it when our whole extended family is together. When he was younger he used to say "I love it when everyone is together." He thrived in the hugs and attention from family members. Alec never has. He loves his family but needs time away. Lately he has been saying "People scare me." I'm not sure what to make of that one, but it is interesting. Although extremely affectionate with me, close with his sister and in awe of Ian, Alec is just not a social kid.

These are differences the examiners are not seeing in their offices. Alec does come off as friendly and social and funny, but it is not the same quailty as Brandon.

Two similar but completely different disorders in my humble opinion.

Visual problems

I found out last week Alec has some visual problems. First he failed his vision screening at school and his teacher said he squints and looks out the side of his one eye a lot...and of course there's the not recognizing people thing.

So there's this new OT who specializes in vision problems where we do speech therapy. She did a quick screen...and found all sorts of problems. With tracking and muscle control, with convergence and with good old acuity. So next week we go to the developmental ophthamologist. He will probably need vision therapy. We could have sent him to college by now with all the money we have spent on therapy. It is disheartening to have found something "else" that is "wrong" with him. However, there is always the hope that addressing it will show some improvement.

We are also starting Therapeutic Listening. I have to admit I am skeptical. I mean, I fail to see how listening to certain music through special (read:expensive) headphones can help with SPD or PDD or ASD or whatever it is that he has, but I have to admit the days he does it at OT he is very calm for a while afterwards. So...we'll give it a try. It can't hurt to try (except my wallet that is!) I have found that swinging for 10-15 minutes before school really helps him be calm and organized for school. I wonder if this no-cost alternative works just as well??

Who is it?

Lately I have been wondering if Alec is perhaps faceblind. There have been many signs along the way which I have always made excuses for or chalked up to other reasons.

Where to begin? The first time I had a glaringly obvious sign...about a year and a half ago. Alec was 4 and invited to a birthday party for a child in his class. He seemed to have NO idea who the birthday child was. The birthday child is autistic so I thought....Ok, maybe this child never talked to Alec before so Alec doesn't know who he is. (I still thought it was weird, but whatever, I kind of let it go...)

Then one day we were sitting in the hallway at school waiting for my daughter while she was at speech therapy and his swimming instructor came over and Alec did not recognize her till I told him who she was. OK...weird, but hey, he's used to seeing her with wet hair.

Same setting as above and my oldest son's 5th grade class walks by. I said "Alec, look who it is!" as his brother is waving to him and he says "Who is it?" OK, now THAT is weird.

But here's the clincher...last week he went up to another woman and hugged her after speech therapy b/c he thought it was me. Then he hugged a stranger at his brother's football game b/c he thought it was his grandfather.

Yes, I can't deny it any longer. I'm pretty convinced my baby is faceblind. I honestly don't know what to do about it, it's just an observation.

More purposeful movement=Less stimming

School has started and (fingers crossed) so far so good. I have been diligent about keeping Alec on his sensory diet. I even signed him up for gymnastics with his sister which has a TON of sensory input - running, jumping, tumbling, swinging, flipping, etc. It is fantastic for him and he loves it - AND there is another boy in the class AND the class is small - only 4 kids and 2 of them are mine. Yay!

The teacher and the resource teacher have both stopped me in the hall separately to tell me how sweet Alec is and how much they like him. Yay! I guess if he was a pain in the ass they just wouldn't say anything so I am taking this as a major positive. His daily charts for staying on task and paying attention have come home so far with all stars circled and he has been interacting with his peers and teachers. Another Yay! I signed him up for soccer and he has made a friend on the team. The boy is a full year younger but that is perfect for Alec. Yay!

Probably the biggest and best change I have noticed over the last month or so is Alec's ability to note when he needs sensory input and go about it using purposeful movement - jumping on the trampoline, swinging, riding his bike, etc. There is still some purposeless, "autistic-like" movement to be sure but it is way less than what it was a few months ago. I have talked to him about jumping around and singing and basically told him he can't do it in public. He has been trying and I am very proud of him. That and the finger sucking are the two things he does that make him look "different". We have talked about things you do in private (go to the bathroom, change your clothes, finger suck, and jump around singing) and that if you need to do those things you do them in private. I have also showed him there are other things he can do if he needs to move that he can do in public - basically the things I listed above. He is doing a good job of substituting socially acceptable movement for the stimming we were seeing so much of before.
Yay!

Been Reading

I have been reading a lot about biomedical treatments for autism and related disorders. It has been rather eye opening. Although this is an area I largely dismissed, I gave it a second glance after a friend of mine (who has an autistic child) told me her take on it and shared some of the successes her son has enjoyed.
I have read "Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies", "Hope for the Autism Spectrum", and part of "Children With Starving Brains". I am sick to know my older two sons were shot up with Thimerosal via their vaccines. Alec, apparently, was not as this mercury-based preservative was taken out of most vaccines in 2001. In any case, Alec did have rather serious reflux as an infant, had some breathing difficulties for which he received nebulizer treatments, and to this day gets weird rashes on his back and butt for which there is no explanation and which the pediatrician "blows off" although it never really goes away.

Also - took Alec for an appt with the ADHD doc and although this guy "guesses" Alec has PDD-NOS (never heard of the term sensory seeking, pretty much blew off sensory processing disorder), he prescribed Ritalin saying there is a 50/50 chance it will work. What?? And basically if it doesn't work, just keep working on social skills. And great that he is in speech but didn't seem to get why he was in OT.

These guys just seem to go down their checklists of behaviors and never see the whole child. I never thought I would pursue biomedical, but this appt prompted me to do just that. I honestly don't know what I am going to do about the Ritalin prescription. I haven't decided yet.

The good news is that Alec is definitely progressing. My two older boys play tackle football, which even at the tender ages of 9 and 11 involves 5 two-hour practices a week. Plenty of time for my younger two to bond with the other siblings. Except last year Alec never really played, much less bonded, with anyone. Oh, he would play tag if everyone was doing that or join in for a few minutes if I encouraged him, but mostly he would sit with me or play by himself. What a difference a year makes!!!!!!!!!!!!!! This year he is playing with the other kids, initiating contact, and even looking forward to seeing them. He is still behind in conversation - his conversational skills are lacking and he sometimes says things a bit off topic or misinterprets things. He also asks everyone how old they are and often refers to them by their age instead of their name. However, he is able follow along with plots in play (usually thought up by other kids but still...) involving such varied topics as baseball, pirates, house, zombies, races, tag, hide and seek, dinosaurs, dragons, etc. Tonight I beamed with pride as he yelled to another 5 year old "Want to swing with me?" and "Hey, let's play pirate!" and "Hey come over here!" This would have NEVER happened last year - he seemed largely oblivious last year and even a bit annoyed when other kids would try to play with him. Need to keep at the speech therapy and social stories to keep conversation on topic and to remind him to LISTEN and ask others to repeat if he doesn't understand...

Did I mention I made an appt with a biomedical doc? She is a developmental pediatrician with great credentials. I want to see what she has to offer...the appt is not until APRIL!! I couldn't believe it! I may even change my mind by then. I just feel this is the next step - therapy is in place, got the IEP, doing "my" version of Floortime (which probably isn't exactly the right way but it gets him playing), and encouraging him to play with other kids whenever possible. I still feel there is more I can do so here we go...

Slippery and slithery

My 11 year old has been off the ADHD meds this summer and what I am noticing is that he is just "slippery". I can never pin him down. I ask him to do something and somehow it doesn't get done. He gets distracted doing something else. We are doing practice math problems this summer and he gets at least a third of them wrong due to stupid mistakes and carelessness. He has lost 3 pairs of flip flops, a pair of bathing trunks, his football mouthguard, a sweatshirt, and his cell phone (luckily the latter was later found by his friend's mother). When I talk to him, his eyes are sliding off to the side, he paces when he talks to me and he hasn't been able to finish reading even one book. The extreme hyperactivity of his younger years is pretty much gone - but the fidgeting, restlessness, distractedness, inability to concentrate and forgetfulness are in full force. I feel like I am constantly nagging him and getting nowhere! It seems like our relationship is getting rather negative. I feel like he is just out of reach. His mind is elsewhere.

And yet he seems very present when he is playing football, playing his guitar, talking to his friends, or playing video games. How much is adolescence (which according to the doctor he is now in) and how much is ADHD? Since he is my oldest I'm not sure but I think a good bit of this is ADHD. It is so frustrating and I know it must be for him too! Don't know what we will do about the meds...

Processing Speed

Ok, Alec has a slow processing speed. This was part of his IQ testing which was done with all the testing done at school this spring. His IQ came out as Verbal (100), Nonverbal (100), Full Scale composite (104) and Processing Speed Composite (88) which is the 21st percentile. He especially had difficulty with the "Coding" portion of this test. The fact that processing speed was significantly lower than Full Scale IQ was noted at the IEP meeting.
This discrepancy was also noted at previous testing at Kennedy Krieger. I didn't pay it much attention, but now I am wondering if this is the reason why he has a such a hard time "getting his words out", expressing himself both verbally and in writing, why he was thought to have an auditory processing disorder - because he is just S-L-O-W!!!!!!!!!!!!!

My preliminary University of Google research has confirmed that many kids with ADHD (in particular) and also ASD have a "slow processing speed" despite normal or above-normal IQs.

Just another piece of the puzzle that is Alec.