How will I know when to leave good enough alone?

[Hasil72]

Sorry, this is a little venting and a big question. And yes, I know that every child is different, but you all have so much experience and suggestions that have helped, I thought I'd ask. How will I know when to either accept that this is the best it's going to be with DS or keep trying new meds, behavior mods, etc.?

DS(8) is currently diagnosed with HFA/Asperger's, ADHD, sensory integration disorder, and generalized anxiety disorder. He takes both Strattera and has a Daytrana patch. He spent 2 years in disabled preschool, 1 in LLD Kindergarten, and has been in the mainstream for 1st and second grade. It seems like every time we get one thing under control, another sends us ten steps back. First it was sensory and motor issues, then ADHD, then HFA, then anxiety. What next? Last year was a mess; meltdowns, hiding under tables and locking himself in the bathroom at school, huge impulsivity issues. This year, so far, is much better. He has a PT aide in the mornings, we have the reward system in place, no hiding, great grades. Now we are trying to concentrate on the impulsivity, calling out, personal space/touching issues and an increase in seeking tactile input. He becomes fixated on things or topics and can't let it go. He is incredibly smart and easily frustrated like most HFS'a because he knows that he does things that he shouldn't but can't control it or he knows when there is something that he should be able to do but can't (like ride a 2 wheeled bike). He's emotional. Catch him on a bad day and all you have to do is look at him the wrong way and he cries.

DH is frustrated and constantly asks, "when will he adapt?" or "what about total transformation?" "Why can't he tell me why he did that?" Sometimes he just doesn't get it. I try to explain that DS's brain doesn't function like everyone elses. Docs always want to change the meds. I want to do the best thing for DS but when is enough enough? He is NOT an experiment. I have no idea where to go next. And if I'm feeling like this, I can't even imagine what DS is going through!

Thanks for letting me vent! Any suggestions are welcome.

 

[alizesmom]

Venting is good. I have no experience with your problems but will say that you can trust your "mommy senses". Sending hugs. Karen

 

[Earstou]

I understand your confusion, as I'm right there with you! I've switched doctors because of the meds pushing. We had one doctor give us two ADHD meds, a med for sleeping and a med for appetite. Way too much.

I've gotten to the point where we don't change meds unless they stop working, or they are causing problems. My child had a terrible meltdown on a new med once, causing a huge problem at middle school. Plus, I will only try new meds during a school break, so I know how it affects BEFORE attending school.

Our doctor told us some of the adhd meds can cause tearfulness.

Thru the years, we have seen the meltdowns decrease. We rarely encounter them now. Hope you see the same thing!
The problems we have now are lack of friends (which doesn't seem to bother my ds), and homework issues (due to poor organization skills). Other than dealing with the homework issue, things are going pretty smoothly now.

 

[mazz1]

it must be very different over here in britain as my two children are in the best school in the area for children with autism and i only know of one child on any medication, also once diagnosed we rarely see the consultant again, just a GP for common childhood ailments as such

we've found that my daughter improved slightly just before her teens and now those teenage hormones have set her back a little but i've seen a huge difference and improvement since she was your sons age

years ago we sat in a meeting whilst 15 professionals told us what she would never do and they were wrong with most of it, she has amazed us with every passing year

just lately we have accepted that she will probably need support all of her life and she will probably never be able to look after a child of her own but i say probably here because with the right partner to support her who knows what the future will hold

there is supported living and supported employment available for her and she will have every opportunity to go to college or university should she aspire to

the big thing i've come to realise is that there's no quick fix or short cut past this terrible thing called autism, i have moments when i still grieve for a normal life without autism but i have come to accept Jo for who she is, a beautiful young lady that will not be defined by the label of autism and the limitations others placed on her


you sound a little like me many years ago, sad, alone, scared and frustrated?

looking back i can see that i was grieving for the child i didn't get and it seemed like i was in a dark tunnel of unhappiness with no way out but i can see the light up ahead now and i'm more positive about the future and with a little more time you will be too

it will get better sending hugs

marie xx

ps any support groups nearby you could join, perhaps it would be good for you to go along?

 

[pcparamedics01]

Every year there is a new problem with us too. But we overcome it and move on. As my son matures the issues seem to be less frequent. My son is on Concerta. He does very well on it. We have tried others that do not work. I would not try new ones unless it is over the summer. Even with meds we have issues but get through them in time, so changing meds may not be the answer. I know it gets overwhelming at times but sit back and take a deep breathe and say tomorrow is a new day! That's how I get through it. That and a lot of praying.

 

[Hasil72]

Thanks for all the help. I count myself lucky, for we are truly blessed that DS is so high functioning. He's my sunshine. He sees the good in everything. Luckily his teacher, principal, and aide really advocate for him and he is steadily improving. We're currently looking for a karate school to see if that helps and to give him a sense of belonging to a group. We'll see what the doctor says on Thursday. (I think I'm just about the only Dis'er left in NJ this week.)