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suzanas
LIF Zygote

Member since 4/11

6 total posts

Name:

New here

Hi,
I am a mom of twin boys and a 3 year old girl. One of my twins has had some behavior issues/red flags if you will for some time now. He will be 13 months next week. I've started the process of EI and am going through the evaluations now. I have seen a ped. neurologist and will be seeking a 2nd opinion next week. It is presumed, not yet diagnosed that he may have PDD. I am a range of emotions right now. I want more than anything for this not to be happening but I'm told this is normal to feel this way...what is normal anymore? I want to cry (which I have), scream, pull my hair out, you name it. I've even pleaded with god to take my life if he could make my child well...
What should I expect?
Will my child ever be able to do the things his brother and sister do?
Everyone keeps saying time is on our side because he is so young...time is on our side for what? No one seems to be answering the question I long to hear the answer for...will my child not be the way he is now??? I'm sorry if I mis-spoke or said something the wrong way. I don't know what I am doing anymore...I'm in chaos mode...
Any help or advice would be greatly appreciated....

Posted 6/11/11 11:34 PM
 

FranM
And so it goes....

Member since 9/05

2217 total posts

Name:

Re: New here

Chat Icon first breathe
second know that you are doing the right and best thing for him right now by getting him evaluated and finding the help he needs.

There are no 100% answers - just take it one day at a time.

Message edited 6/12/2011 7:08:16 AM.

Posted 6/12/11 7:06 AM
 

Raziel69
LIF Infant

Member since 4/11

56 total posts

Name:
Susan

Re: New here

Early Intervention will get him caught up with other kids.

Posted 6/12/11 8:02 AM
 

smdl
I love Gary too..on a plate!

Member since 5/06

32461 total posts

Name:
me

Re: New here

Welcome to the boards!

1- It's overwhelming at first. It's normal! The uncertainty of the future.

2- You are starting early which has been shown to have the best chance of success

3- The future is so unpredictable. NOBODY is able to tell you how your child will respond to therapies. Overall, he WILL make progress. How much progress and at what rate, depends on each child.

Yet, you can only do what it best for your child. You cannot give up on them.

Hang in there! The beginning is really rough for parents. Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/12/11 8:35 AM
 

Erica
LIF Adult

Member since 5/05

11767 total posts

Name:

Re: New here

I'm not a PDD parent, but I remember getting the results from my son's evaluations. On top of that a daycare center that was just awful to him and us. It was overwhelming. The range of emotions was so intense. I sat myself down and said "this is the same kid as yesterday and i love him just the same." The next day the psychologist called and help to explain the scores and numbers. I definitely recommend that you ask each evaluator to call you and explain the results and ask a lot of questions (even about the future if that's what you are wondering)

I will say that time is important. We only started at 3.5 with DS and the progress in 6 months has been HUGE. If I had let this go until Kindergarten, we would be starting there (further delayed) and he would be missing out on the learning.

our friends' son was diagnosed with PDD after 2. We thought he was quite severe, but he graduated from ABA well before Kindergarten.

Posted 6/12/11 9:09 AM
 

A3CM
Avatar Title

Member since 9/08

3762 total posts

Name:
Mommy

Re: New here

Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

it is completely "normal" to feel the way that you do...

AJ is almost 4 (he turns 4 in Aug) he started EI when he was 15 months old, he has a classic Autism diagnosis but after 3 they are classified as a child with a disability.

while i cannot specifically give you a concrete answer to "Everyone keeps saying time is on our side because he is so young...time is on our side for what?" i can say, that you will know when it happens.

there are so many things i NEVER thought AJ would do because of his DX. he is potty trained, at the age of 2 he was counting to 100 & knew the entire alphabet forward and backwards, by 3 he was able to count backwards, he can add, subtract, he can read for the most part.

we started him in school 3x2.5 hours a week for socialization. he was also getting over 30 hours of in home therapy, ABA, PT, OT, speech.

by 3 he was going to school FT 5 days a week for 6 hours.

i dont know when it happened but i can tell you it is happening. the one thing i continued to do was i MADE SURE he spent at least 1-2 times a week with his NT friends. that it self helped him... i cannot tell you how many of AJs classmates parents have said to me, but so & so was different and with all the therapies it didnt make sense for so & so to keep in touch with their NT friends.

breath, relax (or try) and there will be good days and bad days, and your child is not sick, he is different, embrace that... i see the world in a whole new way because of AJ... he has a younger sister who is NT (she will be 2 in July) and their interaction is amazing..

good luck and if you ever want to talk FM me

Posted 6/12/11 9:54 AM
 

KarenK122
The Journey is the Destination

Member since 5/05

4431 total posts

Name:
Karen

Re: New here

There is not much more I can add than what came before me. It was all great advice/comments. I just wanted to give you a Chat Icon .

Posted 6/12/11 10:52 AM
 

Ookpik
LIF Adolescent

Member since 3/06

726 total posts

Name:

Re: New here

My daughter is PDD. Early intervention is KEY. She was severe at age 3 but within weeks of having services (we started with the whole gamut of services-ABA, speech 5x a week, OT, PT and feeding therapy in a contained classroom), the improvement was a complete 180.

The emotions you're feeling is so normal and it does get easier. I prefer to think of autism as a gift but it took time to see it that way.

Lots of hugs...everything will be ok! Chat Icon

Posted 6/12/11 7:58 PM
 

Diane
Hope is Contagious....catch it

Member since 5/05

30683 total posts

Name:
D

Re: New here

Just wanted to start out commending you for seeking the help. I don't want to repeat what everyone else had said. But I know what you are feeling. I also have twin boys. One is on the spectrum and the other is not . Christopher was diagnosed at 18 months. Having Matthew (HIS twin) is the best role model for Chris, and will always be. There are no guarantees as to where your child will be in the future,but I can guarantee that early intervention works. Please feel free to fm me.

Posted 6/12/11 8:01 PM
 

MDF
.

Member since 5/05

2313 total posts

Name:
Melissa

Re: New here

I agree with everything that has been said. My ds was diagnosed with PDD nos. When we started last year he was not speaking. He is now saying sentences. I never imagined him being at this point by now.

Posted 6/12/11 9:13 PM
 

lvdolphins
My Loves!

Member since 5/05

46292 total posts

Name:

Re: New here

My DS is 4 and has PDD-NOS.
I started him in EI at about 15 months.
At 27 Months, he started going to school (an EI seperation class) and then slowly started recieving services there.
Once diagnosed (a few months before his 3rd Bday), they added ABA to his schedule.

EI and ABA totally helped him improve. He went from grunting and throwing tantrums out of frusturation, to, full on sentences and telling us stories.

Come this Sept. he will be going to his school in the AM for Pre-K and then to a "typical Pre-K", 2x a week with a SEIT.

We can't say yet if next Sept (2012) if he'll be in "regular kindergarten", but, if he keeps at the pace he's at, it is a pretty good possibility!

Keep doing what you're doing! EI is definitley KEY! Ask about "School" when he gets a little older! I think school also definitley helped him get to where he's at (especially with his social skills).

Good Luck! Chat Icon Chat Icon Chat Icon Chat Icon Chat Icon

Posted 6/12/11 9:53 PM
 

AidansArmy
LIF Adult

Member since 3/11

1292 total posts

Name:
Suzanne

Re: New here

Chat Icon You've come to the right place. I sent you FM. I too have twins and one is PDD/NOS and the other is typical. I just found this site a few months ago. Everyone's advice has been great on here. Stay in touch...

Posted 6/13/11 8:09 AM
 

suzanas
LIF Zygote

Member since 4/11

6 total posts

Name:

Re: New here

Thank you everyone...
I don't really have too much time these days to get on the computer.
Everyone's post have really helped alot and are really encouraging.
We are in the process of finishing up the evaluations and I will keep everyone posted.
Until then trying to stay strong for my boy...

Posted 6/14/11 11:36 PM
 

pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

Re: New here

I don't have any advice for you. What I do have is open arms to give you a feeling of comfort. I think what you're feeling is normal. It is exactly how I felt when my DD was diagnosed last year. And although I am doing everything I can to help her with therapy and anything available, there are still days that I feel totally lost and overwhelmed and hopeless. As I said, I have no advice, just know that you are not alone, and if you need to vent, this is the place. I will listen, and not judge. Chat Icon Chat Icon Chat Icon

Posted 6/15/11 11:07 AM
 

marlatuts
LIF Infant

Member since 10/10

200 total posts

Name:

Re: New here

Posted by suzanas

Thank you everyone...
I don't really have too much time these days to get on the computer.
Everyone's post have really helped alot and are really encouraging.
We are in the process of finishing up the evaluations and I will keep everyone posted.
Until then trying to stay strong for my boy...



Just remember you are always doing the best you can...no matter how overwhelming it gets for you...

We are here for each other as a support system...trust me, i needed it when my son was diagnosed last year...no one knows what we go thru unless you have been in our shoes.... Good luck Chat Icon Chat Icon Chat Icon

Posted 6/16/11 8:31 AM
 

cjik
Welcome 2010!

Member since 2/06

8879 total posts

Name:

Re: New here

I wanted to give you lots of Chat Icon Chat Icon Chat Icon Chat Icon . I am pretty new to this board also--my son was diagnosed with PDD-NOS a couple months ago.

My experience is short, but it's a roller coaster. When he was first diagnosed, it felt like a death, that's the closest comparison I can make. But then about a week later, I realized nothing about him had changed, he was still my darling boy, he just has a diagnosis. Since then, I have good days, and I have days when I feel sad. For the most part though, I try to stay focused on my job right now--learning about his disorder and figuring out ways to help him.

You don't know what the future holds for your child, but you wouldn't for any child anyway. But I can understand that you don't want to see your child struggle. Early diagnosis has the best results though, long term. At this point, it's hard to say whether your child will do the same things as other children or not, but know that you are getting help early which is so important.

Try to take each day at a time, figure out what you can do to help your child in that day, and see what happens.

Posted 6/16/11 5:55 PM
 
 

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