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So lost..what do i do now?

Posted by on Jun. 14, 2007 at 2:06 AM
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Hi... I'm new and so glad to find this. My son is 3  years and  2 months now. He was on the right track with every thing except speech until he was 18 months old.   He started coloring on the walls and everything i tried to make him stop didn't work. Every day on the same wall. Still to this day a year and half later he'll forget and do it. But when you look in to his eyes and repeat no for the 1000th time I could tell it was like the first time. He got kicked out of day cares for biting and taking his clothes off, He never did that at home. The flags go on and on.... We reached out to eci to get speech. My husband i and felt like it was something more but no one around us ever let on that they thought so.. but we were starting to think something must be up. A year of speech and nothing but elmo and ball. Then the three year mark and they get turned over to the school. But right before he graduated we asked our eci worker about getting him evaluated. They made us think that it would be best to wait until the school had some time with him. I feel like they never looked at him. His teacher was great. She took so much time to get to know him.  She sat me down one day and asked if I know anything about autism. Finally someone Else that saw what we could see... But nothing has changed. They told me not to get him diagnosed because of the ramifactions of that being with him permanently.  It seamed to make sense but that was two months ago and i feel like he's not getting any better and I know that time is important The younger the better. We are dealing with foot fetishes and communicating with pictures cards that I made . I feel like I'm doing the wrong thing by doing nothing but I don't know what to do. Everyone That I look to for answers won't answer them or they tell me to wait... I'm tired of waiting..nothing is changing.. Some one please tell me what to do
by on Jun. 14, 2007 at 2:06 AM
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by Group Owner on Jun. 14, 2007 at 11:55 AM

You need to tell your school district that you want a formal evaluation done now!  Labels can be a good thing for our children.  Without a formal diagnosis, your son will be denied many services. 

Does your child have an IEP?
by New Member on Jun. 14, 2007 at 12:37 PM
What is an IEP?
by Group Admin on Jun. 14, 2007 at 1:17 PM
I personally do not agree that you should not have him diagnosed. As my co admin just stated it would be beneficial for him as far as services. Also just because he is diagnosed with autism does not mean he is condemned! There are a ton of famous ppl with autism. You need to get the services he needs now! Early intervention is key. I know it is hard to have them tell you something is wrong with your son. However, not getting diagnosed if he is autistic is not going to change anything. It will just hold him back. Sometimes you have to listen to what your heart is telling you and not do what ppl tell you is socially better. I hope everything works out for you and your family. Autism is not the end of your life its just a different life than you may have planed!!!
by Group Owner on Jun. 15, 2007 at 9:13 AM
An IEP is an Individualized Educational Plan.  It is a legally binding document that the school district, yourself, and a team of other people (therapists, regional center coordinator, etc) come up with that states what services the school is going to provide your son with.  I can't believe no one has mentioned this to you.

Where do you live?  Do you know if you have regional centers in your area?  If you do, you should call them and tell them that you think your son may be autistic.  They can get the ball rolling for you.  Also call whoever is in charge at your school district and tell them you want a formal eval now!

Like Brittany said, autism isn't the end of the world - it is simply the start of a new one. 
Quoting mystolenchild:

What is an IEP?

by New Member on Jun. 15, 2007 at 12:40 PM
 Well my son IS in a class for kids with disability's. It,s through public school. He goes monday-fri from 8-11 and every so  often they hold ARDS. Where the teachers and a group of other people and i sit in a room. They ask me questions and stuff and they send a packet in the mail to me, it's like a summary of everything they talked about. Is that what your talking about? I'm sorry if I sound naive. I just don't know.... and I fear that my young age could be a problem too. But thank you so much.... I don't know what I would have done if i had not found this. I get the packets from the school board. The last time we had one his teacher told me she was only going to put that he had a speech delay insted of mentioning that he had autism. I don't know why.... I trusted her to do what was best I guess. Well now i  know ....I'm going to do this right. I'm going to start making those calls. Thank you. If you have anymore advise... I thank you
by Group Owner on Jun. 16, 2007 at 10:46 AM
I have never heard of ARDS.  I know that IEPs are in every state, though, so I'm really surprised that he is in a sp. ed. class and doesn't have one.  I would request one, along with the evaluation.
by New Member on Jun. 18, 2007 at 7:07 AM
I agree-An IEP is a must. You should also make an appt now to see a neurodevelopmental pediatrician. You need that label to start your son's path in life. Also, if this district suggests any doctors that should be seen they must pay for them. My son was in the district for only 2 months when I realized that they didn't have the APPROPRIATE  class for him. In 2 monthhs with a good lawyer my son was receiving 30 hours a week of ABA. Please don't stall since the window of opportunity is short for these precious children. Hope this helps-Michelle
by on Jul. 31, 2007 at 3:19 PM
I know how you feel..There is a real feeling of hopelessness that comes whe you find out your child is not like other children and that you may have a lifetime of challenges ahead of you both.
I think it is critical that your son gets a formal evaluation. Labels are simply that labels, but if you have something you can redilly identify than you can get your son the educational plan he needs to strive. My son has been in school with an IEP since he was 3 years old. I very sincerely believe that he would have been lost if he had not been involved in this highly structured school environment.
Like you, I had NO idea what I was doing or who to talk to. My mom and older sister were the ones who told me to take him to the school district and have him evaluated. I couldn't even get his DOCTOR to tell me why my son wasn't talking at 3, why he wouldn't interact with other children, and why he seemed so fixated to the point of obsession on things that I considered irrelevant. The school evaluated him and gave him the diagnosis (one that I backed up by another evaluation at the University) and immediately they enrolled him Speical Education classes with an IEP firmly in place that we have followed for the last 4 years of school.
Now my son is enrolled in his second year of Kindergarten, except now he is in regular classes with 45 minutes daily of Special Education Resource Services. He has come so far from the child he was three years ago..I can't even express.
You are the advocate for your child. You will be his champion and his one constant. If you have questions don't be afraid to ask. Demand a sit down with the principal in your school, the counselors, the teachers, the resource teachers, EVERYONE! You might only get an hour twice a school year, with only 15 minunte session every two months in between.. But make those minutes count! Make your son everyone's priority! It's never too late, but the sooner the better!
Good Luck!


Mom to Cameron and Hayley


by Member on Aug. 19, 2007 at 12:02 PM
I don't see the label of autism as something to avoid. The sooner you get the diagnosis - the better. Cara was diagnosed at about 2 1/2. I am so glad we got the diagnosis because without it we would never have gotten the services Cara so desparately needed. Not getting the diagnosis is not going to change whether a child has autism. I can't believe someone would tell you not to get an evaluation so as to avoid a label. The ramifications of autism are permanent - whether it is diagnosed or not. The sooner you get a diagnosis, the sooner you can get the services you need. I have to admit that I get mad when people indicate that a diagnosis of autism is a bad thing. It isn't. The diagnosis is the means to get the necessary treatment. Autistic children are unique beautiful individuals who need help to live in the "normal" world. Don't wait to get a diagnosis and necessary help. Our pediatrician was the one who referred us to Cincinnati Children's and other services. You need to find a way to get to a specialist in your area. As hard as it is, you have to keep knocking on doors until you get the help your child needs. The hardest part of the autism diagnosis for me has been the fact that it has pushed me so far out of my comfort zone. By nature I am not a forceful or confrontational person. I like to fade into the background. However, Cara's special needs have forced me out of the background. I have to be her advocate and stand up for her. Her IEP is this Tuesday and I am terrified. I have to assert myself to ensure that she gets her one-on-one aide as well as some other issues. I am so scared, but I know I have to do it. Hang in there. My prayers are with you. Liz
by Member on Sep. 8, 2007 at 1:25 AM
I agree, having a diagnosis will not only help him get the services he needs in school but will also help you to be able to focus your efforts in getting a better understanding of how to help him.  Trust your instincts and have him evaluated - you know your son better than anyone and are the best person to know if something is up.  I can relate, we knew for quite a while that something wasn't quite right with our kids but the ped kept giving us the "wait and see" approach (we have a different ped now) and so many people don't really understand autism so they tend to try to minimize your concerns, at least that was my experience.

Best of luck to you and your son!
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