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I previously had him in Camp Royall but besides being too expensive now its capped... I am strugging to find something his age that he can go into for the summer. Anyone know of any programs, camps, etc...?

June 28, 2016
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Answer Summary

Parents of autistic teens connected over the challenges of finding affordable summer programs in Wake County, with one parent describing how... Read more

Parents of autistic teens connected over the challenges of finding affordable summer programs in Wake County, with one parent describing how their nonverbal son loved Camp Royall's structure but could no longer afford it. Several members shared experiences managing their children's unpredictable behavioral swings and medication journeys, including trials with Abilify, Risperdal, SSRIs, and stimulants, with one parent reporting dramatic improvements from magnesium supplements that even their son noticed. A recurring theme was the emotional balancing act of parenting severe autism, learning to laugh at absurd moments to keep from crying, doing extensive research before trying medications, and never quite knowing what triggers the good days versus the challenging ones.

A MyAutismTeam Member

Yea ya gotta laugh at the situation... just yesterday i took him for a run and hes flaying around with his noodle arms (not very coorinated)... my step kids saw him we all had a good laugh...like i tell my family it's so ridiculous that ya just gotta laugh to keep from cryin;) Good advice! I had him doing these fish oils ( kind that's for kids on no fishy taste), again since he won't verbally communicate it's difficult to say but I think there was some improvements at times... never any worse at least... I'll have to check out magnesium tho thanks

July 1, 2016
A MyAutismTeam Member

". that electric shadow... man that's all I need is blake scarred of his own shadow;) "

That gave me a good laugh.

This is his second go 'round with the Abilify. He started taking it last August and seemed to improve enough to go back to school. Then in February, things started to slip. Began having problems with teachers he had, heretofore, really liked; refusing to go in many days, etc.

We were sus that it may have been the SSRI that the doc had placed him on a couple of months after starting the Abilify but warnt sure, so we gradually weaned him off of both.

The rages and bad temper started to make disturbing encroaches so we placed him back on the Abilify at a low dose.

So far, so good.

I will tell you this, the evidence is only anecdotal at this point, but the most dramatic improvements that we've seen our son make have been after starting him on 200mg of chewable magnesium. Even our son noticed a difference and he's NEVER volunteered that he's felt better after taking something before - ever.

Just pray that it continues and he doesn't regress as he's always done before when we thought he was beginning to improve.

We are going to start B vitamin therapy tomorrow, as well.

June 30, 2016 (edited)
A MyAutismTeam Member

Wow I'm really glad I asked... always tried to stay away from meds but he's exhibiting different challenges as he enters teen years... that electric shadow... man that's all I need is blake scarred of his own shadow;) Thanks for input though... how does Ian do on Abilify?

June 30, 2016
A MyAutismTeam Member

Uh-huh, he'd had the range of stimulants for the ADD - those probably the simplest WYSIWYG. He was on Depakote for close to a couple of years for absence epilepsy - I know it had a calming effect but it also made him lethargic, pale. It did something to his RBC/WBC that reminded me of my brother's leukemia and I seem to recall liver enzymes were showing up on tests near the end of his treatment.

Glad to be off that one.

He's been placed on and then removed from various SSRIs (antidepressants). It always resulted in this very strange dis-inhibition each time he was placed on it. The luvox was the last one he was on and it was the mildest/least side effects but eventually it caught up with him, as well. It helped with his OCD and tics but he would do these very uncharacteristic, odd things, out of the blue, without warning.

His personality seemed like it was changing as well. He reminded me of a grown actor trying to play the part of this naughty boy - can't really describe it - just strange.

Then they had him on Risperdone a couple of times at various doses - that was a very dark period - very scary. It was also the period where I began learning ALOT about psychotropics and the effects they could produce. When he began describing certain specific patterns or shapes of auroras and certain colours he would see when he closed he eyes, when he stopped being his normal active self because he feared his electric "after-self" would stay behind as he ran up a staircase, for example, I KNEW it was time to take him off. He was describing the early stages of something very similar to a DMT trip.

You don't wait for the next appointment to see what you should do for something like that!

Thing is, all of the drugs help at least SOME people and one never really knows how it will effect a given person until they try it. Its often the same with non-behavioural meds. I can give one of my children penicillin and it would save their life. If I gave it to the other one, it could possibly kill him.

Anyroads, all that just to say that a parent really has to do their homework. Have to educate themselves. I see comments that make me cringe because we thought the same things ourselves at one point and I know what they will have to go through before they really understand.

Well, there's that. LOL! Another post the length of the current tax code. I keep promising that I'll keep my responses to a reasonable length but I never do, ha.

BTW, currently he's on guanfacine (Tenex), Abilify and magnesium supplements. He seems to be doing pretty well with these so far.

cheers,

June 29, 2016
A MyAutismTeam Member

My son is more severe on the spectrum but I get your point about extremes. Blake will one day be on point with everything and then next day off (I mean walk out of bathroom with no clothes on off) It's like a short circuit in his brain idk what to do very frustrating... have you explored medicines for yours?

June 29, 2016

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