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Post by brandonsmom on May 4, 2007 23:58:06 GMT -5
My 3 yr old, Draven had started having absence seizures when he was young and the ped referred him to a neurologist who in turn set up a MRI & EEG. Both were clean. He has severe speech & language delay and his ped referred him to Babies Cant Wait. He is now in Special needs preschool. His special instructor, neurologist and ped suspected Autism. He had his follow up a few weeks ago and an autism panel was done and it was negative. They said he had autism and gave me some papers to call the Emory Autism Center. I am going to call them Monday. Where do i go from here? The Autism center is 2 hrs away from me. What care will he need to have done to help him. I know he will need OT, PT he will hopefully get next year thru the school, his meeting is in a week. Will he need extra OT and PT services outside the school system. Its a lot to take in. I dont even know exactly what part of the spectrum he is, the ped said it was maybe PDD, he is high functioning. He attempts to get his point across may it be by pointing, grunting, pulling me by the shirt tail or the sign "more" that he has learned. I suspect SPD in him as well, is that something that comes along with autism? He has a very limited diet, he eats the same things almost every day, he wont try anything new. He is terrified of jello for some reason, it jiggles and he loses it completely. He doesnt have any problems with contact unless he intiates first contact, if i try to pick him up or keep control of him especially at dr's office or grocery store he loses it. How do i maintain control of him when he wont let me. A big scene ends up happening and at times i have people say "Why cant you get a hold and control your child?" He is always lining things up in certain order and you dare not touch it. Between him and my my 2 older kids my life is hell because they wont respect each others space and at the same time want their "own" space. Does that make any sense. Nothing but screaming and yelling, fighting until they finally go to bed. My oldest daughter has ADHD, OCD, SPD, Aspergers.
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Post by jj on May 5, 2007 0:44:35 GMT -5
Oh my gosh! You have a lot to deal with. I'm trying to think of some advise for helping you keep your sanity. This may be a dumb idea or something that just will not work but would it be possible if you had a schedule where one kid is in the bedroom for a hour while the other does his thing in the play room or living room. Just try to maintain separation??? I'm really at a loss at what to tell you. Even I am overwhelmed.
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Post by charliegirl on May 5, 2007 3:02:34 GMT -5
I read your post and I really think the best place to get the answers you need will be at the Emory Autism Center. So much of what you can do and what you will need someone else to do depends on what his specific problems are.
I know that there are things that you can do to help him with sensory issues at home. Tigger has a son with sensory issues and I'm sure she will be happy to share what she knows.
It has to be hard having 3 children, 2 who are on the autism scale, even high functioning. I know with my nephew he totally doesn't understand the idea of people having personal space and that they are uncomfortable when someone invades it, and he is 23. They also usually have a poor understanding of social skills and need to be taught precisely how to act in different situations, what expressions mean what, etc. My nephew does have a couple of close, lifelong friends though so I do know that they can learn to socialize. No one who didn't know him really well would even realize he is aspergers.
I had a neighbor who's son is extremely autistic and the progress he has made is remarkable. He still would rather hang around people rather than interact with them, but I actually saw him get up in front of a crowd of people and sing a song he had memorized. I never dreamed he would ever be able to do that.
No matter what you find out at the autism center, I just want you to cling to the fact that there is hope for your son. It isn't the end of the world. This is a very scary time for you but the more answers you have, the more control you will have and the fear will be replaced by hope.
We're here with you. You don't have to go through this alone.
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Post by puzzled on May 5, 2007 8:02:01 GMT -5
First of all, great job that you kept following the trail of testing and doctors until you got a dx for your son. The earlier he gets some therapy, the better..perhaps the Autism Center can meet you at some halfway point for at least some of the therapies? My grandson needed speech therapy and it was too far away, and they had a sattelite class at our local hospital here in town...maybe something like that could be worked out for you as well? The twins that I care for were just formally dx in the winter, and they are almost 6. So much more could have been done for them had their mom listened to preschool teachers ( I was one of them 3 years ago) that told her there were serious delays, and had them checked earlier... You are a great mom for getting things going at a young age for your baby!  |
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Post by brandonsmom on May 5, 2007 16:31:59 GMT -5
I agree the best place to get information is at Emory, but ive learned from experince there are almost impossible to catch and you'll play phone tag to talk to the person you need too, like calling social secuirty and getting an appointment is a nightmare, they are backlogged so it will be a least a month before i could get him there. This is the only center like it and its in high demand. Maybe thinking about moving closer in because some of his care provided will be in Atlanta anyways. With the whole space thing, they cant stand to be around each other yet cant seem to get out of each others backsides. There are like siamese twins. Good thing is my 8 yr old is in baseball and my daughter is in girl scouts so they get that chance to get a break from each other.
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Post by jj on May 5, 2007 20:29:49 GMT -5
Well, Brandonsmom, Get your IPod out, put on those headphones and listen to some soothing music....that way you won't hear the fighting.  Kids do fight though, I know I did as a kid and my step-sons did too although not all the time. I think it is pretty normal but can drive one nuts. |
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Post by katiekat on May 6, 2007 9:36:40 GMT -5
Oh Brandonsmom big hugs to you! You certainly do have a lot on your plate. Although my son has a different DX than yours I know how frustrating it is to try and get some help. I feel like I have been chasing something for a year that doesn't even exist. Just know that you are being a great mom and trying your hardest to help your kids. ;D
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Post by misty on May 6, 2007 11:14:10 GMT -5
Heres an Autism search that lets you put in your location info & helps you find local providers & services. You can even enter how many miles you're willing to travel & it will find all the autism centers & services within the limit. 209.200.89.252/search_site/ |
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Post by wetmores on May 7, 2007 14:31:41 GMT -5
I'm sorry things are so hard for you right now. My now 37 year old daughter was dxed with PDD at age 5. I have no doubt that now she would be dxed with Aspergers. Over the years the terminology has changed so her diagnoses got changed. ADD used to be called minimal brain dysfunction and there was no such thing as non verbal learning disabilities or high functioning autism. While all the terminology change the one thing that remained constant was the child! That child is now a college graduate who has lived on her own since she was 18. She was most recently assessed by the Emory ADHD clinic and we found it to be a very good place! The biggest piece of advice I can give you is figure out what he does well. Focus on his strengths. Emory should be able to tell you what those are. peace, marge www.net-haven.net |
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Post by crazyhouse on May 10, 2007 3:26:11 GMT -5
I just read this post and everything (except for the lining up objects) sounded just like my 5 year old when he was 3 yr old. Jake had his own language and I was his interpreter, everything was so jumbled not a single family member could understand him half the time. Global delays he was 18 mths behind for a while. I hope this little bit of advice helps, in our house Jake has to be prompted many times before his mind gets into the mode and we have to grab his face to get eye contact all the time, PATIENCES PATIENCES PATIENCES.  I try not to overwhelm him with going to many places in one day and I try to give him plenty of time to move from one situation to the next. I'm sure you know all these great techniques already having a child that has AD but it never hurts to remind yourself, it will get better. In a couple years |
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