Another newbie with an intro

[iamali]

Hello, I’m Ali. I post most often on ML, but I decided I should post here as well.

I have two children, both boys. S is age 10.5 and E is (almost) 9. Their father and I are divorced, but we share 50/50 custody.

S is my SN child. He was 7 weeks early (I had HELLP syndrome) and was behind in minor ways as a baby, but nothing super major.

He’s had severe constipation starting at less than a year old. It was finally diagnosed as encopresis after about 6 years. There are still times, even now, that he’ll soil his underwear. He’s had many, many issues in school since he was in kindergarten.

He’s been diagnosed with severe general anxiety, ADHD, and social anxiety by his psychiatrist. He’s been in and out of therapy for the last 5.5 years. All three times (yes, we’ve used 3 different counselors) we’ve been told that there is nothing they can do for him because his behaviors in the office are just fine (the most recent one told us to come back once school started if he was still exhibiting behaviors). We’re probably going to start again with the most recent therapist at the recommendation of the psychiatrist. He lies constantly. He is incredibly smart and very manipulative.

I think S is also on the Autism spectrum, but he does not have that official diagnosis, however his psychiatrist leans toward the sign of him having it. The official test for Autism is only done at one hospital here and we don’t know if it’s something our insurance will cover.

He takes Ritalin LA and Risperdal. We’re probably switching him to Strattera soon to hopefully decrease some of the ADHD symptoms since school has started again.
As far as school goes, he’s in 5th grade. He recently started in what is called the STARS program here in San Diego. It’s basically a special needs classroom. It is definitely what he needs, as he does so, so, SO much better with more one on one support. Back to school night was last night and I really like his teacher and the fact he’s in a much smaller classroom.

Probably similar to so many of you, it’s been a long and very hard road. Last year he was suspended multiple times. He was in a “normal” classroom last year and all years prior.
And while I know every person here will tell me it’s not true, I feel like this is all my fault. :/ I feel like I’ve failed him as a parent. I worry about his constantly. I’m scared he doesn’t and won’t have friends. I’m scared he’ll be picked on and labelled as the “weird” kid all his life.

It’s funny, when I type this all out, I feel like my snapshot doesn’t even scratch the surface of what a long and difficult journey this has been. Like probably so many people I never thought MY kid would have these issues. I have gained such empathy for parents of kids who are “mis-behaving”. I don’t judge them any longer. I’m THAT parent whose kid freaks out and throws fits in public. I’m THAT parent who can’t “control” their kid.

[origami]

Hugs. And welcome!
I just wanted to say I used to judge parents of misbehaving kids too. Now when I see one I catch myself staring at them because I'm mentally debating whether or not I should go tell the parent "I've been there. You're doing a great job."

[litebright]

Hi, ali. Big hugs on a hard road.

[KB]

Welcome Ali. I'm sorry you have to be here with us, but it's a great group. Hugs.

[auntie]

Hi iamali

Your DS does seem to have a lot of red flags for ASD. It almost sounds as if the dxs he's been given piecemeal are all things that could be subsumed under or comorbid with ASD- encopresis, prematurity, ADHD, social issues, general anxiety. 

I would encourage you to push for a multifactored eval from a developmental pediatrician and from your school district which could at least offer you an educational dx. There is no benefit to putting it off- without a full and accurate dx you'll be stuck playing wack-a-mole with services instead of getting him a more comprehensive program that addresses the core deficits of ASD if that is what you're dealing with. 

You mention a worry about him not having friends and about being labeled "weird". A good social skills program for kids on spectrum can address that- help him not only learn to interact in appropriate ways, but to understand that peers will thhink him odd based on how he behaves. Kids on spectrum don't tend to figure that out on ther own. In contrast, a kid who suffers socially because of ADHD impulsivity would do a social skills curriculum that is focused more on self regualtion rather than teaching the social rules the kid is assumed to already intuit. Anybody who's heard my soapbox rants knows I'm a fan of Micheele Garcia Winner's Social Thinking for kids with ASD. It is truly life changing. 

I would be concerned about STARS and the sorts of peers he's been included with. Sometimes kids who act out behaviorally get placed with kids who are emotionally and behaviorally disordered- for kids on spectrum who are socially delayed, it's a bit like delivering the lamb to the wolf. Under what classification is he listed on his IEP? You need that to be accurate to avoid a danger or inappropriate placement/services. 

www.sandi.net/page/2053

This actually looks like the sort of placement a behaviorally challenged kid with ASD would get in reading about it. I can see why you're excited to have him in that classroom. 

I would start with a dev pedi. I find it hard to believe there's only one place to have ADOS done in San Diego. I have friends with kids on spectrum in the area and I know they see different clinicians. I wouldn't accept a dx on the strength of a single scale- ADOS is the gold standard but insufficient to make a dx like this. I'd want an IQ test, Conners, BASC-2, TOPL-2, GARS or GADS and a Vineland to support that. He should also be observed by a clinician in his classroom and an unstructured setting like recess. 

I know this testing can be very expensive. But my concern is that you need to create your paper trail. A child who is served in a self contained classroom is one who is at risk for not being fully independent as an adult. About 85% of the adults who have a clinical dx of Aspergers (the so called highest functioning on spectrum) are unable to find or sustain full time employment. He's at higher risk of needing SSI as an adult and this will be "easier" to obtain if you get an ASD dx now. Once he's 18, you will be unable to force him unless you have guardianship established and you won't get that without a robust dx.

Good luck with the Strattera. IME, it isn't as effective as a stimulant for ADHD-like behaviors nor as effective as a SSRI or atypical antipsychotic for calming down anxiety/behaviors. It can also cause GI upset, so watch closely for this. 

Please don't feel as if this is some failing on your part. It sounds like you and S have been dealt a difficult hand to play. A lot of the kids I know who did tantrum and were very challenging around behaviors sort of settled down around puberty, so you may be in the worst of it behaviorally right now.