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So lost..what do i do now?

Posted by on Jun. 14, 2007 at 2:01 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 2:01 AM
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by Member on Jun. 14, 2007 at 2:20 AM
I think you should get a proper diagnosis because that will open up the doors to therapy and special ed through the public schools.  Forget the label sticking with them, at least he'll get the help he needs and deserves right away.  My daughter was diagnosed right after her 3 year old check up (in April).  Like you, we knew something was up because she would say some words but never in sentences.  Luckily we had a good doctor who referred us to a Dev. Ped. who diagnosed her with autism and told us to get with the school district right away for evaluation for their special ed. preschool.  We're still in the evaluation stage for speech therapy, but the ball is rolling for the preschool and she'll have an IEP for next fall.  The preschool is a mix of developmentally disabled and NT kids.  I know it's mind boggling with all the information out there, but everything I've read points to early intervention.  Most people we know would never think of my daughter having autism, and maybe she's just high functioning with no verbal communication right now, but the way I look at it, no matter how "functioning" she is the therapy and special education she'll get won't hurt her, and can only help her.

Good luck.
by Member on Jun. 14, 2007 at 10:36 AM

Get a diagnosis so that you can get him the help that he needs.  The sooner services start the better. 

by on Jun. 14, 2007 at 12:30 PM
Don;t put the for to long.  Our son was in theropy at age one(st,pt,ot).  He wasn't diag. till 3yrs by a nerologist.  Now at age four we do all his theropy at home.
He also likes to draw on walls or furniture.  I took  a large canvas and framed it so we can replace it with new canvas.  We put it on his favorite wall then hung a bag with beeswax crayon blocks (his favorite) on the side.  We still get writing everywhere at times but not as much.   He realized he had his own special place.  Mandy
by New Member on Jun. 14, 2007 at 1:07 PM
WE had the same problem with writing on walls,but it was ALL the walls. I did the same-"NO<NO<NO!" And everyday-more writing. It got so bad, I was buying MR. CLEAN magic erasers by the case! I would finally end up in tears because I couldnn't keep up . My hubby is a painter,so we decided that when he got over that  stage,we would just paint! After we stopped yelling at him for it(it took about a month) he just stopped doing it . We painted the whole house,and to my amazment,he never did it again! If you are having a hard time getting him evaluated-change doctors! Find someone with a gentle approach,and DEMAND him to be tested!  Like you said,the earlier they get tested,the better.
by Member on Jun. 14, 2007 at 10:12 PM
I guess everything depends on your school district, but I know that in ours, the diagnosis just opens doors to treatment.  It doesn't limit him in any way.  The school doesn't have to give him services he doesn't need just b/c he has a diagnosis, and you don't have to accept services you don't think he needs.  Too many services are not usually the problem.  It's getting the services you need that can be a hassle.  But that may be different for every school system.

Still the earlier the better.  And you know what you are dealing with, whether you have the diagnosis or not.  We've been treating Chago like he was autistic for years b/c the therapies that worked for autistic kids worked for him.  We just couldn't get the drugs to help him until we got an official diagnosis.  We didn't need them until he started hurting himself and actually, once he started hurting himself, no one doubted that he was autistic any more, so we were okay before and we're okay now.

The diagnosis to me is no big deal.  I mean, it was hard to obtain and hard to finally accept emotionally, but it just confirmed what I had known in my heart for years.  And if someday he makes enough progress to loose the diagnosis again, so much the better.  But for now, it opens doors to helpful drugs (understatement of the year) and services from the school.  I agree with the other gals:  call Doctors and get him seen asap by someone who knows austism.  Then, do what you know to do and research for more answers, whether you get the official diagnosis or not.  The therapies may help and the progress is worth all the effort.

by Member on Jun. 14, 2007 at 11:18 PM
Don't let anyone tell you that it is okay to delay in getting him properly diagnosed. Every day that you wait is one more day that is stolen from him. Do not delay in taking him to see a developmental pediatrician who will have him see a speech/language pathologist, psychologist and neuropsychiatrist for a complete evaluation. Don't depend on the school district to do it. They're not going to do anymore than they have to and will wait until your son is lost to you to act. Be proactive. Read all that you can and seek the best professional help for your son that you can. Do not take no for an answer. He is depending on you. Good luck!
by on Jun. 14, 2007 at 11:25 PM
I'm in agreement with the other ladies, too.  Get the diagnosis!!  As soon as possible.  Do not let anyone tell you it's not good for him to have a diagnosis.  Knowing what the "problem" is (I hate that phrase) is half the battle.  Our children do not have, and are not "problems."  THey're just wired different and we need to figure out where they're plugged in, so we can help them.  I can't believe someone told you a diagnosis would actually hold him back!!  I don't know what backwards hole they crawled out of, but they need to go back into it.
Good luck!
by New Member on Jun. 14, 2007 at 11:32 PM
You deffinitely need a diagnosis first.  Once you have that you will be able to get lots of help.  It will then be official and more people/services will come and help.  You could probably find someone to come out to your house to work you all!!

Good luck....just remember there will always be hills to climb, but there are beautiful valleys between each hill!
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