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Twins98
LIF Infant
Member since 8/08 243 total posts
Name:
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So confused...
My 2yr old DS was just diagnosed with moderate to sever autism. I'm in shock I though he had mild to moderate pdd. He has been getting Speech, OT and SI for the past 6 mths. I'm getting him into an ABA school. Any words of advice is greatly appreciated.
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Posted 4/10/12 5:51 PM  |
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marlatuts
LIF Infant
Member since 10/10 200 total posts
Name:
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Re: So confused...
Its a hard thing to hear when you get that diagnosis...you did the right thing by getting him into an ABA program...he's only 2 and starting intervention now only increases his successes...will he be in a FT program?
I've been where you are...I'm still there...only thing is my DS is now 4, and within 2 years of ABA, getting him into different recreational programs, not being intimidated by taking him to new places and wondering if he will have his tantrums, etc etc etc....its endless...but once you see that every little success your child has, its one step closer for him/her to be a part of our world...
It never ends for us as parents with children on the spectrum...we will always fight harder and will always try to find something else that we think they can conquer...
Good luck and hang in there! FM me if you ever need to vent :)
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| Posted 4/11/12 12:45 PM |
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Twins98
LIF Infant
Member since 8/08 243 total posts
Name:
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Re: So confused...
Thanks so much for your reply. I spoke to his OT & Speech therapist and they feel he is not sever. They suspect the same as me moderate pdd. The psych that diagnosed him yesterday told me not to even bother with pdd because they are getting rid of that. So hard to keep up with all of this.
He will be getting 20hrs ABA at home and in school.
I am relieved he will be getting more services because I have been fighting for more the past 3mths.
Now I just think i am more confused than before his Diagnosis. My Speech and OT think his Sensory disorder has a lot to do with all his delays. They also said they are with many children with sever autism and my son is not near that.
Since it takes about 3mths to get an appt with a developmental ped I'm going to book it now and see how he has improved in the next 3 mths.
I also heard a better diagnosis is from a developmental ped. Is that true? Its weird to me how she can come up with this after just 45mins of asking questions.
Thanks again!
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| Posted 4/11/12 4:54 PM |
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rbsbabies
LIF Adolescent
Member since 12/08 544 total posts
Name:
Melissa
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Re: So confused...
As hard as it is to read DON'T go off the label. Look at it this way, he's getting the services and he will only grow from here on out. So tough I know, I'll never forget when my son had his dx and the Dr., referred to him as flat...it broke my heart. Now it's a year and a half later and he is by far from flat. (not that I even understood totally what he meant but I guess like emotionless?)
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| Posted 4/11/12 5:17 PM |
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KarenK122
The Journey is the Destination
Member since 5/05 4431 total posts
Name:
Karen
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Re: So confused...
I know it's hard but try not to get to hung up on the label or the exact diagnosis. Focus more on the services DC is getting and how much it will help him in the long run. It is so important to get services starting at a young age and a diagnosis gets you a ton more than if you didn't have one. The amount of change in my DD in the past three years has been amazing.
My only suggestion is that make sure you like and see progress with your therapists. If one isn't working ask for another. Kids respond differently to different therapists and techniques and you need to make sure you have the correct fit for your DC. I went through a quite a few a speech therapists until I found one that clicked.
Good luck!! : )
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| Posted 4/11/12 5:32 PM |
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marlatuts
LIF Infant
Member since 10/10 200 total posts
Name:
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Re: So confused...
Posted by Twins98
Thanks so much for your reply. I spoke to his OT & Speech therapist and they feel he is not sever. They suspect the same as me moderate pdd. The psych that diagnosed him yesterday told me not to even bother with pdd because they are getting rid of that. So hard to keep up with all of this.
He will be getting 20hrs ABA at home and in school.
I am relieved he will be getting more services because I have been fighting for more the past 3mths.
Now I just think i am more confused than before his Diagnosis. My Speech and OT think his Sensory disorder has a lot to do with all his delays. They also said they are with many children with sever autism and my son is not near that.
Since it takes about 3mths to get an appt with a developmental ped I'm going to book it now and see how he has improved in the next 3 mths.
I also heard a better diagnosis is from a developmental ped. Is that true? Its weird to me how she can come up with this after just 45mins of asking questions.
Thanks again!
Im wondering if you got the dx from the same cold hearted dr I took my son to. This dev pediatrician was so cold and basically didnt explain much to me. He observed my son for like you said about 45 minutes, he got most of his information from what i told him, and he gave the autism diagnosis and static encephalopathy...when i googled what that was, i broke down in tears ad didnt talk to anyone for what seemed like an eternity. I drove around aimlessly thinking and wondering what i was going to do next. After a few weeks of speaking to other parents who have gone through this same feeling you are going through, and speaking to my son's EI coordinator and OT and SEIT at the time, i got a second opinion from a pscyhologist. Based on her eval, she explained everything she was doing, explained the severity, and mentioned that he would be able to qualify for as much services as he needed...(i got his dx in March 2009) that summer, i enrolled him in swimming classes, he went to summer school 5 days a week for 3 hrs, and that fall he started a full time ABA program...i am sad that he will be leaving that preschool program because they are amazing! He is now talking, eating by himself, eating a variety of things, potty trained, comes with me anywhere and I dont have to worry about a tantrum as soon as he steps foot in a new place...i can go on and on...
There are still bad days, dont get me wrong...but what parent with a special needs child or not doesnt have bad days?!
I appreciated being able to vent and knowing that there were real people out there who REALLY knew how i felt on this board, going to support groups, going to events with families who also have special needs children etc...I hope that this finds the comfort that you need and gives you the strength to tackle this autism!
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| Posted 4/11/12 7:43 PM |
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Twins98
LIF Infant
Member since 8/08 243 total posts
Name:
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Re: So confused...
Thank you all! I don't feel alone anymore. I am so much more relaxed but ready to tackle anything to get my DS all he needs to make his life easier.
He was DX'ed by a school psychologist. She had NO bedside manners. She just scribbled on paper got on the floor with him for 5mins and turned to me and told me his DX. I'm like ok....what now, what do i tell my DH when he gets home from work. She told me go to autismspeaks.org and hands me her business card and says tell your husband to call me if he wants. ugh!
Anyway I am so relieved he will get all the help now.
I have 14yr old twin boys and they see me upset. I just told them he needs more help then i thought. I don't think I should tell them autism yet? But I don't know. They are very over protective of their young brother but I don't want them to look it up and be as confused as me. I don't know? What do you think?
Also does anyone keep a journal of their DC days? I was thinking of doing that. Any advice : )
I can not thank you all enough!!!
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| Posted 4/11/12 11:48 PM |
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KarenK122
The Journey is the Destination
Member since 5/05 4431 total posts
Name:
Karen
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Re: So confused...
We did keep a journal to monitor the tantrums. We were trying to figure out triggers so we wrote down all activities during the day, what happened right before tantrum and how long the tantrums were. We also did a food log but she never ate so that journal was almost empty lol. Once she started talking we also kept a log of new words she learned to we could make sure she was maintaining the knowledge (her aba teachers also maintained this log, but sometimes we would add to it if she was saying something when there were not there).
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| Posted 4/12/12 8:30 AM |
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A3CM
Avatar Title
Member since 9/08 3762 total posts
Name:
Mommy
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Re: So confused...
i was there when DS was 15 months old (he will be 5 in Aug), i knew that AJ was Autistic, so it didnt surprise me, but the way the psych DX him sounds about right.. i know its a lot to take in, but if your child is Autistic a good psychologist will be able to spot it within minutes of meeting your DS. i know it doesn't make it easier to digest, but throughout all out evaluations within 5-10 min, all said to get a psych done.. when his psych eval was done within 2 min of starting we knew before the eval was completed or he was scored.
as for the comment about go to autismspeaks thats bull crap, and i would have been pissed about that...
i would tell your twins.. they are old enough to understand it and if they have questions, call the county and ask about resources where your twins can seek some support.
the most important thing we have found that works is to document document document. it will help your case if you need more services or help shed some light on your son.
AJ at 15 months was getting about 20 home hours of therapy and then at 18 months he got 40, at 2 he went to school and continued with the 40 hours and when he turned 3 he went to school full time and only got 6.5 hours at home.
the journey still continues for us, but the improvements are amazing. he will be in a self contained class next year in our district school, with the opportunities do co-mingle with all the NT children.
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| Posted 4/12/12 9:05 AM |
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Twins98
LIF Infant
Member since 8/08 243 total posts
Name:
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Re: So confused...
Thanks! You all are amazing supporters!
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| Posted 4/12/12 11:41 PM |
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betani
LIF Zygote
Member since 2/08 40 total posts
Name:
bethany
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Re: So confused...
Posted by Twins98
The psych that diagnosed him yesterday told me not to even bother with pdd because they are getting rid of that.
I wonder if he's trying to diagnose your DC "ahead of the curve." The Autism section of the new DSM is undergoing huge changes in diagnostic criteria and how much the "spectrum" encompasses. PDD-NOS is presently on the one end of the spectrum and usually is DX'ed in children who aren't old enough to meet the other criteria yet or who truly just don't fit in perfectly elsewhere. I wouldn't be surprised if that is one of the first sections to get a severe makeover.
In a weird way this could be a good(?) thing as without a label you essentially lose the right to the services you receive. Other than for paperwork/services, however, labels don't mean anything. You treat the symptoms/areas of difficultly, and those would be the same no matter what label you stuck in front of it.
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| Posted 4/15/12 10:32 PM |
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Twins98
LIF Infant
Member since 8/08 243 total posts
Name:
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Re: So confused...
Posted by betani
Posted by Twins98
The psych that diagnosed him yesterday told me not to even bother with pdd because they are getting rid of that.
I wonder if he's trying to diagnose your DC "ahead of the curve." The Autism section of the new DSM is undergoing huge changes in diagnostic criteria and how much the "spectrum" encompasses. PDD-NOS is presently on the one end of the spectrum and usually is DX'ed in children who aren't old enough to meet the other criteria yet or who truly just don't fit in perfectly elsewhere. I wouldn't be surprised if that is one of the first sections to get a severe makeover.
In a weird way this could be a good(?) thing as without a label you essentially lose the right to the services you receive. Other than for paperwork/services, however, labels don't mean anything. You treat the symptoms/areas of difficultly, and those would be the same no matter what label you stuck in front of it.
I wondered the same thing. I have been calmer lately and not focusing on the DX and just focus on the help he is going to get.
It is good he got the DX. Now I'm just waiting for the review meeting from the city official and hopefully he can start school ASAP!
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| Posted 4/19/12 11:37 AM |
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