Need Direction from Experienced Moms

[mymommy1]

DS 11 is diagnosed with ADHD.  His processing speed is single digit.  He is behind in math, writing, and spelling; on grade or above for other subjects. 

 

Since August, his behavior has been getting worse and worse.  This isn't the first time this has happened, going as far back as 3.  In fact, some days his tantrums are just like when he was little.  He was one of those kids who screamed all the time no matter what we did.  We are seeing now that his system is very sensitive - to meds, dyes, anxiety, fear, disappointment, etc - and he lacks the ability to self-regulate. We didn't seek evals sooner because ADHD runs in both our families, and we thought he would get better as he got older.

 

Other issues we are dealing with and that are overwhelming me:

1. I have not gotten through a shopping trip with him in about a month.  He sees something he wants, we talk calmly about why we won't get it and what he can get instead or that he can get it, but with his allowance.  Then he slowly spirals down the drain as we go painfully through the store.  It goes from "I can't have the cupcakes" to "I can never have sugar again."  Big things. We leave not finished.

 

2. School is not happening.  If I even get his brother's work out, he starts to get upset: I hate it, it's stupid, I can't do it.  He has been reading library books, writing at OT, listening in to brother's subjects, and doing a little math or Latin when he isn't wigged out.

 

3. He wants friends, but when I put him in activities, he doesn't interact with the kids.  Soccer for 6 weeks, knew no kid's name, last game before he played with anyone outside of practice. Homeschool game day - spent the whole time looking at games, talked to his brother.  I offered to introduce the kids, but he wasn't interested.  He plays well with his cousin.  If his brother talks to kids, he'll tag along, often sharing his collection of stuff or making up games with rules no one can follow.

 

4. He collects:  trash - wrappers, bottle caps from parking lots, his teeth flossers; rocks, sticks, leaves; stuffed animals; boxes.  We've been working on talking through why, refusing germy things, and cleaning up when he isn't aware.

 

5. My MIL (63) has had a life-long struggle with ADHD, mood disorders, bipolar.  It is still a BIG issue. We see some of the things our son does in her.  My husband is discouraged because his mother hasn't found sustainable help.  However, he hasn't given up, but much of the doing is on me.

 

I have an appointment with a child psychologist for evals, but those don't come unit January.  She does work with many autistic kids. I'd like to see if what I'm thinking seems on target before I wait months to see the wrong person.  I think he has many HFA symptoms.  Would that explain the other things ?  Maybe meds first?  He did well with ADHD meds this summer, but since August, hit or miss.  I thought they were increasing his tic, so I backed off.  Tic did not improve. 

Thanks!

[PeterPan]

nt

Edited November 2, 2016 by OhElizabeth

[Crimson Wife]

  I think he has many HFA symptoms.  Would that explain the other things ? 

 

Yes, there are a lot of "red flags". I'm not a psychologist/psychiatrist/developmental pediatrician but I would definitely encourage getting an eval from someone familiar with HFA/Asperger's (which "officially" no longer exists).

[mymommy1]

I'm keeping the eval. I'll get an appointment with his ped. We need to talk about the ADHD meds, and I have to have a referral if psychiatrist becomes needed.  There are three in our mid-sized town and none are taking new patients, so I need a referral for sure. 

 

I asked for OT because I really feel sensory is an issue.  She helps with his writing and talking to him about calming and senses in general.  He can do most things for himself at this point.  I want to see if she will help him perfect his shoe tying and try joint compressions on his arms (where he tics).  Are there other things I should ask for?

 

Our local ABA office is full for fall, but with a dr's referral, I might can start in spring. Right now, I'm doing as you suggested in the other thread and working on calming, stopping before fits start, etc. 

 

Local school will do the eval sooner and is willing.  They use a psychologist in private practice in a near larger town.  He has also worked in clinics and the local hospital adolescent psych unit for over 10 years.  Since my second guess is mood disorder or issues, I was thinking the private physiologist might be better.  Anyone with kids with bipolar, mood disorder, OCD, etc. with advice?  I hate to specifically ask the special ed coordinator if she can do that in my son's IEP.  Those labels can be hard or seem hard for people to deal with.

[Lecka]

She (or he) is a special needs coordinator.

 

There are children with those needs in your community.

 

Yes maybe it is harder and less common than some, but you are not the only one.

 

I think too, 11 still seems young and here it is still elementary school.

 

But if you think of slightly older kids, maybe you can picture it more.

 

Also it is not something you would necessarily know bc kids are aware and will know if you are talking to your friends about them.

 

Anyway -- I don't think you are the only one in your community at all.

 

I think sometimes you just have to start somewhere.

 

Maybe start with 2-3 things and as you do them you see what makes sense.

 

But I think sometimes just start trying things and see how they go.

 

I think your ideas for referrals and waiting lists seem very good. I hope it goes well and spots open up. Good luck :)

[Lecka]

Also it is not uncommon for bipolar disorder to be comorbid with what used to be called Aspergers. I think you can google for label plus bipolar with different labels (as a lot of sites still use older labels like HFA and Aspergers).

[PeterPan]

nt

Edited November 2, 2016 by OhElizabeth

[Crimson Wife]

I would strongly advise you NOT to let the school slap an EBD label on him. Autism is the best and even "Other Health Impairment" is better than EBD. My daughter's IEP was Autism as primary and OHI (for ADHD) as secondary prior to the discovery of the hearing loss. She had some behavioral issues but they were addressed under the Autism and OHI.

 

EBD will put your child in with what used to be called "juvies" when I was in school. You don't want that kind of negative peer influence on him.

[Lecka]

I don't think ED is that bad here, but I think autism is better on the IEP.

 

Here anxiety is also ED, and I think eating disorders. It is not like it is just behavior issues.

 

But overall I agree. I think it is often a cop-out not to put autism.

 

There are varying kinds of ED options and programs though as with anything else, they could be good or horrible or the right thing or the wrong thing.

Edited November 1, 2016 by Lecka

[PeterPan]

nt

Edited November 2, 2016 by OhElizabeth

[mymommy1]

I used to teach in a high school that served a "boy's ranch" (juvenile alternative home), so I understand what you were saying about how ED labeled kids are viewed.  That's what I meant by it being hard.  I don't feel that way; I really enjoyed those boys, but that's not most people.  I want to pursue all possibilities before calling it mood disorder or bipolar and starting heavy meds.  Just today, we are again trying to place MIL in psyc hospital.  I feel the stakes for my son are huge because he is similar to her, but I'm hopeful that his life can be different.

 

I will pursue the HFA diagnosis.  I've called the psyc the school district uses and will ask him what he does.  (It's a small district, so most things are out-sourced.)  I know someone with an autistic high schooler in the same district and can ask her about services there.  I have another home school friend with two sons on spectrum.  I'll check with her as well.  Just got in a hole and couldn't think what to do, so definitely keeping advocate in mind.  Not sure we have those in our area, but we may.

 

Oh, we are in Texas, so he doesn't have an IEP and school district has to do testing. They are supposed to provide services, but some require them to come to school then. 

[kbutton]

I would strongly advise you NOT to let the school slap an EBD label on him. Autism is the best and even "Other Health Impairment" is better than EBD. My daughter's IEP was Autism as primary and OHI (for ADHD) as secondary prior to the discovery of the hearing loss. She had some behavioral issues but they were addressed under the Autism and OHI.

 

EBD will put your child in with what used to be called "juvies" when I was in school. You don't want that kind of negative peer influence on him.

 

 

One, she didn't say she's trying to place him back in the school.  

Two, having the disabling condition listed does not mean he wouldn't be mainstreamed.  

Three, you're wise to get legal counsel or an advocate when the question is autism.

Four, I'm shocked that anyone whose own dc is in a non-mainstreamed placement would describe kids in another non-mainstreamed placement as "juvies."  

 

In our area, the EBD classrooms are like juvie. I have a friend who has a relative placed this way locally (not sure if it's our district or the next one over). She is pretty sure the child is on the spectrum and wrongly diagnosed. Parent doesn't want to deal with the child, so it will not be questioned. The middle school and older classrooms are not a nice place to be from what I hear. I don't know about the elementary versions. 

 

I don't think these classrooms need to be painted with a broad brush, but I would want to know the LOCAL ramifications of trying for an autism IEP and failing to know how to best advocate for my child.

 

The Coffee Klatch radio network has a three part series on advocating for behavioral services for your child. It's informative. 

[Crimson Wife]

 Four, I'm shocked that anyone whose own dc is in a non-mainstreamed placement would describe kids in another non-mainstreamed placement as "juvies."  

 

There is a huge difference between a student with a disability like autism and a student with a conduct disorder.

 

Kids with autism may be aggressive but they're not doing it to deliberately hurt others.

[PeterPan]

nt

Edited November 2, 2016 by OhElizabeth

[PeterPan]

nt

Edited November 2, 2016 by OhElizabeth