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Forum: Children with Special Needs

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  • 1 Post By mamma_anna

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  #1  
April 28th, 2012, 08:42 PM
**Nicole**'s Avatar Mega Super Mommy
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hello my name is Nicole and my husband is Geoffrey , I have two children Emily (3)and Joshua(almost 2). We are pretty much a normal family. So here is the background on what I have been dealing with, my mom around Christmas told me she was worried about my son Joshua because he has not started talking, he played by himself the whole time, never cuddled and you try to cuddle him it would be this mental down. I already had my worries before going down but thought I was just being a worried mother, and you all I am sure know what I mean. As of right now he still has 0 words at almost two he will copy what someone says but wonít say one word on his own ever, not even mommy or daddy. (and thatís a downer because I would love to hear him say one ) he wont point at things if he wants something, he never asks to be picked up, he does not even like to be touched at all, he has this thing where he will stand in one spot and shack up and down where his hands go nuts and he shakes his head, so all his body parts are going in different ways, (this is the best way to tell you what I mean but it still is one of these thing you have to be there to see it to really understand) he never plays with anyone else not even me its like he is off in his own little world. If I donít keep to things at the same time every day by bed time its like a battle just to get him in bed, he acts deaf and never response to his name or even acts like we are talking to him. He is fearless he will climb everywhere and anywhere not even to get anything just to do it. He has never hit a milestone on time rolling crawling walking was late and now speech is so late its not funny. Like I know kids talk when they want but there is no communication in any way what so ever. This is all so scary and new.



Thursday we went to see someone about our fears and we were told that even she was very worried by the way he was in the doctorís office and because of all the red flags were there. I know that its best to have more than just the parents there as sometimes a grandmother or grandfather may see things we donít or could give any more details to it, so my grandmother was there to. She feels that it could be either Asperger syndrome or autism. She told us to start looking into support groups and we will get a call for more testing but that she thinks it that as she normally is able to say right away no your child does not have autism or that itís something other than autism but she could not do that for us. This scares me because then she went into how it wonít change the way we love him (well duh) and that there is so much support out there and I am a good mom for picking up on this as we can help him out better now than if I waited.

So to end this for now as I donít know itís just so fresh and I am trying to work on finding more detail and just wrap my head around it and understand as what does this mean, how will him growing up with autism be different from my little girl Emily growing up without it , what am I going to have to do to help him live a life like Emilyís ? I love my son it wonít change no matter what happens my life goal is to make sure both my children grow up and have the best life I can give them.
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  #2  
April 29th, 2012, 11:25 PM
Happy Song's Avatar Nicole
Join Date: Jan 2010
Posts: 10,797
Hello Nicole,

We are just about the same place at the same time. I am starting the assessment process for my son tomorrow... errr today in 7 1/2 hours. I am looking for the same answers as you are...
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  #3  
April 30th, 2012, 12:48 PM
mamma_anna's Avatar Mega Super Mommy
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First of all, Nicole.

I'm sorry you're going through this. It must be so scary for you. But I'm glad you decided to post in here and I hope you'll stick around. We're a small but supportive bunch dealing with a wide range of special needs. I hope we can be of some support to you.
Also, if you haven't already you should check out the developmental disabilities board. They probably can offer more specific advice about Autism. I don't have a lot of expirience with Autism myself and don't at all consider myself an expert but based on the little that I do know, what you're describing does sound like he's on the spectrum.

I'm Anna btw. I have 4 daughters. My youngest, Ellie has multiple special needs including cerebral palsy, chronic lung disease and severe anxiety with selective mutism. When she's really stressed out, some of her behaviors mimic autism and I've had several people ask me if she's autistic.

Anyway, I hope all the evaluations go well and you can get Joshua the support he needs. Let us know how things are going.
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  #4  
May 1st, 2012, 04:16 AM
**Nicole**'s Avatar Mega Super Mommy
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we are seeing people tomorrow morning. it is kinda scary but the only thing i can think of is how is this going to affect his life when he is older. thats the thing that scares me the most will he have a normal life like Emily. i have not checked out that board going to look now.
Nicole its good to know someone else is in the same spot as we are, its something you don't think will happen to you. you know what i mean. i think i might be here for a while.
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  #5  
May 1st, 2012, 08:45 AM
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Location: long island, ny
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My son was diagnosed with PDD-NOS and ADHD- NOS. he's got all the services he needs, i decided not to share with the school his diagnosis b/c he is only 8 yrs old and he doesn't need to be pulled from his current classroom and i don't agree with the doc who diagnosed him. people are so quick to diagnose and my son doesn't even fit in a catgory. so make sure they do testing and its not one meeting.

my son has seen 3 different doctors and we've been through hell with this. so i wish you the best of luck
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  #6  
May 1st, 2012, 12:41 PM
mamma_anna's Avatar Mega Super Mommy
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Praying for you and your little guy tomorrow. I hope you can get the services he needs and the reassurance that you need. Please keep us posted. Let us know how things go.

Try not to think about him not having a "normal" life. What's "normal" anyway? None of our lives are normal. But I guess that's what we all have in common.
I totally understand the tendancy to compare siblings and worry about one having more advantages than another. It's hard! But they are lucky to have eachother. Joshua will be able to teach Emily things she'd never be able to learn otherwise.
I would suggest looking for a sibbling support group in your area. I know there are playgroups out there for preschoolers with special needs siblings. Hopefully you live near one.

Both of your children WILL have the best life you can give them. I know that for sure just by how much concern you're already showing. You're already reaching out for help and putting in the effort to make things better for them. There's not much else you can ask of yourself.

Please come back whenever you need to.... or just want to. I'm looking forward to getting to know you and your family better. You seem like a wonderful person.
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  #7  
May 4th, 2012, 07:09 PM
**Nicole**'s Avatar Mega Super Mommy
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the appointment we had i messed up it was with the resource teacher she came into the home and watched josh and how he was doing. she tried to interact with him which josh shocked me he got "all up in her face" poking her and touching her which i have never once ever seen him do before, my jaw hit the floor. she said he is showing signs of autism but then shows signs of normal behavior. she thinks he is on the autism spectrum for sure. (i dont fully understand what that means its all confusing) she has sent out orders for an OT and speech therapist to come into the home. she also gave us numbers for support groups and think it might be best for us to go to a parenting class, she was so worried i would get upset with her and was like this is nothing to do with the way you parent and by no means do i think you need it BUT it may help us in more ways then one. think the last thing i would do would be to get mad as its something that could help us with josh.

we have another appointment with the resource teacher on the 17th
we have an appointment with the doctor who deals with the diagnostic on the 22nd
and are waiting for phone calls from the speech and OT.


and whats with this whole doing a high pitched scream just out of the blue.it started on Monday he will just do it anytime anywhere. scream me every time Emily says shhhh every time too lol

thank you for the support <3
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  #8  
May 4th, 2012, 07:19 PM
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Location: long island, ny
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my son will mimick robots and he does high pitched sounds. they are expressing themselves and can't tell us what's wrong, it might be the lighting, it might be to rile up his sister, he might be trying to get your attention.

as long as he gets the services he needs good to go

parent support groups are great to talk to people, make sure you find the right one that can relate to what your going through, i didn't join any support groups, i have a counselor we go to for our son 1 a week and she is great with children and austism spectrum disorders. he does social skills in counseling and we are going to get him in a behavioral skills group this summer.
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  #9  
May 14th, 2012, 10:10 PM
Happy Song's Avatar Nicole
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Nicole

My next appointment is June 4th. They make me so nervous! Good luck with your next series of appointments!
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  #10  
May 15th, 2012, 10:55 AM
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I dont have anything to add, but I find sometimes it feels better just to know someone is listenin and thinking of you.
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  #11  
May 20th, 2012, 09:54 PM
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I just came across this and thought I would let you know I have a son with Autism that turned 11 in Jan. He never said anything not one word until he was 8. I still have a problem understanding him at times. Routine is important to those with autism and asperger's. I find that my son is very intelligent..He's like way off the charts. He can read like 10th grade books. He's been able to do that ever since he was in 3rd grade. His problem was always answering questions in written form. He never played with normal toys..he would take cups and put them in line according to color. If you moved them he would get mad while doing this an expert had asked had we ever been told about Autism and we were like no never heard of it. So, basically this person was right. He would take my finger and drag me to what he wanted or point to what he wanted. He had his own language.
He didn't like playing with anyone he still pretty much stays to himself. he doesn't like people touching his stuff.
My best friends son was just diagnosed with Asperger's which we all kind had a feeling he had a diagnosis of either that or some type of autism. I believe the difference with him was that he talked and everything normally. He likes being on a routine. He is highly intelligent started reading at age 2 he can read college books and he's only going to be 7. So, there is a big difference between them.

I hope you find the answers you need and wish you luck at your appts. I would just love to say don't panic. A lot of us panic over these things. It's time like this we need a clear head to listen to everything we are being told. I heard the word Autism and had no idea what it was or anything about it. It was horrible..
EDee
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  #12  
May 29th, 2012, 06:33 PM
**Nicole**'s Avatar Mega Super Mommy
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i dont know how to keep up every day next week i have an appointment for josh, he is going to see someone about getting tubes as he has fluid on his ears on Monday, Tuesday we see the speech therapist, Wednesday we see the occupational therapist, Thursday resource teacher, cant remember whats going on Friday but i know i have an appointment with our family doctor and then i also have an appointment with emmys school on Thursday...as well as school everyday. then i might also have his hearing test sometime next week or the week after just working things out right now....its going to be a long week next week and i know this week is not even over yet but still.
its just going to be one of the times you just need to not stress and going with it plan nothing else and just relax and breath, if i stress josh will stress and thats not good for anyone
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Last edited by **Nicole**; May 29th, 2012 at 06:37 PM.
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  #13  
June 1st, 2012, 01:47 PM
mamma_anna's Avatar Mega Super Mommy
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Oh Nicole... to you! Your week does sound crazy. I hope it's going well dispite the insane schedule.

We often have weeks like that. Ellie has therapy 5 days a week so whenever there's other stuff going on too, like doctors appointments, treatments, assesments, school stuff, whatever... it can get really hectic. And that's just for Ellie. She has 3 sisters who all have activities and they deserve to have their family involved in their lives. Sometimes I fee like my head is just barely above water.

What helps me deal with it is to make sure that for every crazy week we have, the two weeks following are as relaxed as possible. It doesn't always work out perfectly that way but it really helps to try and keep a balance.

Some people like to get everything done and out of the way at one time (like having all yearly appointments whithin just a few weeks or having 2 or 3 appointments in one day and then nothing for a while)
Some people like to spread things out so they don't get overwhelmed. Whatever works for you. You're right. If you're stressed Josh will be too and that's not good. So don't forget to take care of yourself.
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  #14  
August 26th, 2012, 03:56 PM
Adriana's Mommy's Avatar I <3 my kids
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Hang in there.. I was in your shoes 8 months ago. It can be over whelming, (Hugs)
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Last edited by Adriana's Mommy; August 27th, 2012 at 01:09 AM.
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  #15  
March 31st, 2013, 07:45 AM
alittlelost's Avatar Platinum Supermommy
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It's very hard at first when facing a diagnosis or getting one. You worry about if you kid will ever have a normal life. Most of the time, they will not have a TYPICAL life, no, but they will redefine normal for you and can still have a great life, which I have no doubt your son will have. Get all the early intervention you can; sometimes that can really turn things around quite a bit. Never feel like it's hopeless, always keep trying. It won't be as easy a road, but I can promise you it will be rewarding and there will be special and amazing things about your son's life that just don't happen in a "typical" person's life.
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