OT (long), but you are all experts on ASD, SID, ODD etc. . .

[nuts4wdw]

Thanks, for all of your answers and support. It is nice to come and get some helpful comments. I have decided that I am going to probably take J out of state to get an eval. done. This way, we can get a "clean slate" doctor's appointment.

As for his meds, his current general pediatrician is the only dr. that has ever listened to me and the only one that has tweaked J's meds. J is not able to function without his meds. Without his risperdal, he has horrible rages daily. Without his stimulant patch, he starts giggling uncontrollably and runs, runs, runs . His antidepressant is the only one I would feel comfortable weaning him off of. I have tried weaning him off of the others with dr. supervision, and it was horrible. I, too, understand meds and their effects, I am a registered nurse who works as a school nurse. Thanks for the suggestion, I understood what you were saying. Just won't work for my kiddo.

I will just have to go into the out of state dr. with notes and video tapes showing off his quirky behaviors. J is a great kid and deserves that I "take on the world" for him.

I have another quick question, does anyone here use a weighted blanket to help you little ones sleep better? I'm thinking of getting J one, and he is asking for one. Thanks, once again.

 

[BeckyScott]

We don't have a weighted blanket, but we did try a weighted vest once.

Oh, that did not go over well. Every kid is different. If your son is asking for one, I'd definately try it

Around here, we like "tight" but not "heavy".

 

[robin09]

Wow! I knew the DIS would be there for me. After 7 years of "battling", I've become pretty weary. I believe that he is on the autism spectrum, but when we go in and he looks the dr. in the eye and answers his questions, we are sent out the door with another "shut them up" diagnosis. I'd like to take him in unmedicated, but I can't do that to him. I imagine he must feel horrible without his meds.

We are looking out of state for somewhere that may be able to help him, we are from Southern Idaho. What type of professionals have you had the most success with? J has seen 2 general pediatricians, 2 child psychiatrists, 1 child psychologist, 1 family therapist, and 1 behavioral pediatrician. I've been told the University of Utah may be able to help by his therapist, but I can't really afford to go specialist shopping

Do you think that this would be your next step? Do any of you have a child with ASD or Asperger's that can carry on a conversation. This seems to be what stops the diagnosis of ASD or something else. I feel that with all of his diagnoses that there should a root to all of these problems that hasn't been identified. Thanks, for your stories and support. Please share, I am hungry to hear about others in my similar situation.

PS Sorry for my original post being confusing. I was trying to condense 7 years into one page, not an easy task.

Unfortunately I know what you are going through.. DD9 was known as a high maintenance baby back when she was an infant. Very little sleep, I won't go on about her. DD9 has aspergers, adhd, ocd and more. She is on meds right now.. seraquel and strattera.. concerta was a horror for her (and us).

DD does carry on a conversation, talks quite well now... BUT didn't talk till well past 2 and speech therapy. In fact her speech teacher did some type of vocabulary test to see where she is and said she never had a child score so high... she is in the 3rd grade and is in the 7th grade rating.

Jenn also has eye contact with people. When she starts getting overloaded though her eye contact goes downhill and we have to "draw her back in to focus". I have to laugh a little about your descriptions.. Journey and the skunk smell... jenn was very upset over that and doesn't want to go back to it.. It was that smell that did it to her. Stitch ride also.. never again.. and stitch is her favorite character.

It's taken alot of years, alot of doctors and I'm still searching. She was asked not to come back to the Church's kids program on Mondays because she hit herself in the head and said she was stupid.... It's something that she does when she finds herself doing or saying something wrong. SHE needs to be perfect... that is what is getting to me lately.

I know well about Walmart and the lighting.. for years we did none of the shopping because she couldn't cope with it. She also needs to line up the shelves in stores and fix things that are out of place. We bought her headphones that block out sounds for the times we know will be difficult.

I tend to ramble, sorry about that... The first neurologist also said that she couldn't possibly have anything wrong because she was adorable, had eye contact and spoke with his aide normally... I tried to tell him, but she does well with adults, but has no social skills with kids... She was also sitting on the aides lap, stroking her hair and poking her to tell her to look at something... did it repeatedly until someone paid attention to her. SO as we were walking out of the room and into the waiting room, another child was there playing with toys that she had fixed....meltdown time... explosion until she was able to fix things right (to her). Neurologist had said he had never seen such changes in a child... NO social skills with a child, but relating well with adults.. I don't know, that was 4 or 5 years ago. There are times I doubt the diagnosis too until I read about the varieties on the spectrum. She is doing better, we take each day as it comes... Hugs to you... all will work out

 

[Goofyluver]

Darlin, I feel your pain.

I agree with all of the pps who have given you such wonderful advice. My son has some similar issues. However, it is also my job to work with these kiddos as an SLP.

The school is one thing...I would be curious to see what they are basing their exit of him on. If a child has a need, they have to meet those needs. Period. No arguments. You're a wonderful mommy and I know that you will advocate for your son.

I would recommend, from my personal experience, meeting with a developmental team, which usually includes fresh evals by SLP, OT, PT, psych, and a developmental pediatrician. Also, I would recommend visiting a neurologist. Often times, they can offer good information as well.

You are a strong advocate for your son. Continue to be that and things will work out in the end.