Lurker...I do not know where else to turn

RebC1981

Hi everyone. I have been lurking on this board and I find I can relate to it. My DS turned 4 in August and has been receiving ST since around 18 months. While his speech has come a long way he still has trouble in group/class settings. He currently has a LCSW in his class 2x a week for 45 mins however she approached me today and suggested possibly 4 or 5x a week. His focus and attention are fine in an individual setting  however when the teacher will address the class as a whole he appears disconnected or inattentive. Today I learned he wondered into an empty class which he KNOWS is not his class! Academically he is avg and above avg. He also gets OT 2x a week for 30 because he needs help with his gross motor skills. We have yet another meeting with the school district about PT which he will likely qualify for. 

We have never taken him to a dev ped or neuro for a DX. My husband is an ER doc and seems to deny that there is anything abnormal with our child. My child is pretty well behaved for the most part however when it comes to waiting outside of his class for example before they allow him to enter he can get antsy. It is so frustrating for me and I would kill for my kid to just wait patiently. However he seems to have an impulse control problem too.

I am sorry if this sounds like I am rambling but I do not know where else to turn or how to organize my thoughts at the moment because I lost hope a long time ago and I feel like a terrible mom for thinking this way. Yet not a whole lot of people understand and I have few friends because I tend to isolate myself. Being at home feels "safe" and my son is easy at home.

Any advice would help

RebC1981

I just read what I wrote. Wow  I must sound super disorganized! Ugh no I am just very pregnant and tired. If you need more details just ask because I left out a lot!

lesleytaylor

Im surprised the your pedi never suggested a neuro or developmental pedi for an eval. If I were you I would get the phone and make an appt to see a developmental pedi (they tend to have long waiting lists). In regards to your husband I find that most men are in denial about this kind of stuff.

RebC1981

Yes I am wondering the same about the pedi. I have brought up my concerns but none of the peds saw it as a problem. I wanted to clarify my thoughts some more.

First off in ST my son is working on answering questions since he seems to have mastered the sounds.

In OT he primarily needs help with fine motor skills. 

We are pretty sure that he will qualify for PT as well. He needs to work on hopping, skipping and galloping as well as balancing on one leg.

I am constantly depressed about this and deep down inside I have always suspected PDD-NOS however the new DSM is making me lean more towards SCD but obviously I cannot make that call. My husband being a physician thinks he knows it all. I am a MA Counseling student and I did my first internship with SN kids.

RebC1981

-auntie- said:

I almost always suggest a mom trust her gut.

You've pretty much described a four with PDD-Nos. You pretty much described the IEP services of a child with ASD; in fact I'd venture to say your district is unusually awesome because the level of services being proposed are what a kid with moderate ASD typically would get. 

My son has Aspergers, pretty much what you are describing sounds quite familiar, though DS never needed PT or OT and didn't get speech except for pragmatics and expressive language to support writing, he had many of the same behaviors you are describing. I don't hear you mentioning any rigid behaviors, stimming or special interests- do you see these?

DS did really well in a traditional nursery school but did march very much to the beat of his own drum which they allowed. He had friends and did pretty well socially at that age since the bar is pretty low, but he much preferred the one on one attention of an adult.

Fast forward to kindie, his ASD and ADHD really played hell with his ability to be a successful student. Like your DS, mine had a lot of "out of seat behaviors" which turned out to be a function of not navigating the unwritten rules of social situations and not identifying as a child in the classroom and understanding the socially constructed hierarchy of the classroom. DS would do things like wander out of class when he was bored or needed a break. 

Self-identifying as "one of the kids" remained an emerging skill for DS well into high school; I had to direct teachers to be sure to prompt him individually if he wasn't doing what the class was asked to do.

I'm not surprised your DH is in denial. Unfortunately, he's not an expert in child development because he went to med school. FWIW, my husbands two brothers are a director of emergency medicine at a large teaching hospital and a psychologist- neither one of them recognized DS as being on spectrum pre-dx and tried to suggest our team was wrong after. In the case of the ER doc, he probably met the criteria for PDD-Nos as a young child himself, so DS truly doesn't seem as odd to him as he might to someone less odd himself. DH's brother even has a special interest in the Titanic which is classic Aspergers.

I'm also not surprised your own PCP hasn't suggested a further eval. S/he's unlikely to have observed your son in a classroom setting among peers which would highlight where his behavior and self regulation are atypical. Did he pass the M-CHAT when it was given? DS did; it's not a perfect tool. Our pedi told me the only thing wrong with DS was that he was the "highly valued only child or older parents".

Auntie, I knew that you would have something good to say! Yes we live in a great district and it seems like every other kid his age gets services of some sort! I spoke to the LCSW who does the play therapy in class for my son and she feels that we can get him up to speed to be able to enter kindie on time IF we can get the play therapy bumped up to 4-5x a week in class. She says that he is a pleasure to work with and is eager to please it is just that he constantly needs to be redirected.

As a parent he can pass off as being pretty normal at home or even in a one-on-one setting. When I have on playdates with friends kids he is kind and helpful ect. In class he seems to disconnect though.

You asked about typical ASD sensory behaviors which my DS lacks. I have not caught him stimming or having rigid behaviors. My kid has never had a consistent schedule. I can pull or put him anywhere and he is flexible. He eats any food I serve him (even if it means bribery) but no real obvious issues there.

Lastly I think that it is funny that you suggested my DH may have met the criteria of PDD-NOS himself. I always tease him because he is "quirky" and he justifies our son's issues by saying he had the SAME problems as a child. He was in ST/OT/PT and held back 1 year from kindie.

I was given the MCHAT for my son by his ST but he was not even 2 at the time. He may have been able gotten by on that too if I recall.

RebC1981

Sorry wrote to fast...that should read *As his parent I can see that he can pass off*