Have Questions, Need Answers/Advise

Avatar for rissa93
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Registered: 03-25-2003
Have Questions, Need Answers/Advise
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Wed, 09-17-2003 - 12:37pm
Hi, Yesterday I took my son to a speech therapist because he is nearly 2 years old and doesnt talk. It was the first time being seen and she told me that he was severly delayed. Im not sure what that means. I have been going crazy trying to figure out what to do for him and trying to find a cause for his lack of speech. I was reading all over the internet about speech delays, and I came across information that sorta fit with my son. Autism, except that I didnt really understand what that meant. So I kept looking. And the more information I got, the more it seemed to explain why my son has always been a bit odd. And what I mean by Odd. Well, Since he was a baby, he didnt cry, didnt fuss, was always content to just sorta Lay there.. He didnt crawl for a long time and when he did, it was just an army crawl, on his stomach. He didnt start crawling on hands and knees till he was about 10 months, and He didnt walk till 14 months. We had always just said he was shy. He didnt like playing with other kids, Didnt like when people would look at him. He prefered to play alone. Sometimes he could sit with me for 30 min with out making any noise. And My biggest problem was that he wouldnt talk. At his 12 month check up they told me that if he wasnt talking by 18 months to let them know. But instead.. I waited and everyone told me.. "OH he is just a late talker. He will talk when he is ready. But now that he is going on 2 years (Next Month) And he is still not talking, I have been worried. Another thing I noticed, After 18 months, I would see him walking on his toes, We all laughed and thought.. He is so funny! and He also started doing this thing with his eyes. He would look out of the corners and then shift them back and forth. Or sometimes he would look at you thru the top of his eyes. Like tilting his head down and looking up at you. Well reading about Autism, I found those two things.. As Stimms? Im really lost on all of it, and Im still trying to find answers. I have called to the Early Childhood intervention now, and they will be calling me within the week to schedule a home visit. I liked that speech therapist from yesterday, But I really cant afford that. So Im hoping this other program will help.

I sorta feel like Im making a big deal out of this, And everyone around me has told me not to jump to conclusions, and Im trying not to but it is so hard. At what age was your Child assessed and what are some things that you didnt notice till they were pointed out to you. What are Stimms and What are some of them that your Children have?? Im mostly looking for as much information as I can get. Im hoping that might make be feel better.

Thanks

Veronica

iVillage Member
Registered: 07-11-2003
Wed, 09-17-2003 - 5:31pm
Hi Veronica, and welcome to the board! :) First of all, ((((BIG HUG))))) for you. You are in a stage of investigation on all of this that is very confusing for people who go into it not knowing anything about autism. It does get better and it does get easier to understand, especially as you talk to other parent's of children with autism. Just because you ds (dearest son) isn't talking yet that doesn't mean that he's going to turn out like Rainman.

As you have probably already read, Autism is a 'Spectrum Disorder', meaning that it varries in traits and severities ranging from very severe to very mild. On the severe side a child doesn't talk at all or try to communicate by other means. A lot of children with HFA (High Functioning Autism on the Classic -aka: Kanner's- scale) start out as severe but become much higher functioning as time goes on. My now 9yo dd (dearest daughter) has HFA and is very high functioning now, but she wasn't always that way. She didn't start verallizing until she was 3.5 and didn't use simple sentances until she was 4. She is VERY verbal now......she hardly EVER stops talking.

I have 6 children total, 3 of them are on the Spectrum. Jade, my 9yo, is the lowest functioning with HFA. I also have a 12yo dd with PDD-NOS and a 3yo dd with ASD-PFS. Ayla is clasified as PDD-NOS because while she did have speech delays (didn't start talking in sentances until almost 4) she has an above average IQ and has no problems with her life-skills. ASD-PFS is a temorarry dx (diagnosis) that means Autism Spectrum Disorder-Pending Further Specification. All that means is that Eva, my 3yo, is deffinately on the Spectrum but is so high functioning that she can't be given a concrete dx until she is 5yo; which will probably be AS(Asperger's Syndrome).

Eva does the thing with the eyes. To the outsider it looks like she's playing a game, but to those of us who really know her we know that it is a sign of frustration, fatigue, or excitement. All three of my ASD kids are toe walkers, though my 12yo conciously makes an effort not to. She's been teased in the past about it (mostly by her 'normal' sisters) so this is an area she feels a motivation to do something about. My 9yo is a huge handflapper, to the point of doing a 'whole body' motion. But my other two are not handflappers at all.

All three of these kids were VERY withdrawn at 2yo. Jade actually couldn't even sit up yet at that point (now she's a rollerblade fanatic). Infact, right now I'm watching Jade and Eva, they are doingthe same exact thing (playing with homemade Goo) but they aren't playing 'togther'. They aren't even at the same table. That's the way they are. They will play along side other children, but not 'with them' unless guided and directed to do so. Okay, so Jade really Really REALLY likes to bug her older friend, Scotty, but he's 6 years older than her so for her it's more like playigng with a young adult, not a peer.

eva will waunder off in the house to go play alone with her toys no matter what the rest of us are doing and my 12yo will do the same with reading her books. We have to actually tell them to stay in the room if we want them to do so. In their minds failure to inform them to stay is the same as giving them permission to go. They ALL freak out if someone watches them for too long. My 12yo reacts by trying to make herself small enough to hide behind her book, Eva will become very angry and stomp away (after giving you a tongue lashing), and Jade will start stimming and yelling.

When they were younger they were all very 'self entertained'. Meaning they would sit by themselves for long periods and actualy preffer not to be bothered. Everyone always told us what 'good little girls we had' and remarked that they felt that because the girls weren't always clinging to mom or dad and demanding attention 'like most kids do'. Everyone around us has always thought this was a good thing and simply didn't see why it concerned us. In truth they were, and still are, austistically withdrawn. But most people won't see it that way, no matter what dr says so.

You are doing the right thing by getting your ds evalluated. It may turn out that he is not on the Autism Spectrum. There are a few different things that can cause 'autism-like' behaviors such as CAPD (Certral Auditoy Processing Dysfunction), NLD (Non-verbal Learning Disorder), various hearing and visual impairments, Mutism (selective or otherwise), SID (Sensory Intigration Dysfunction), and so much more. And we have seen children with multiple disorders (co-morbidities) that have an end result that closely mimics autism. Infact, we have a few moms of children like that here on the board. The causes of the behavior is different for their children, but the effects, trials, triumphs, and treatments are very much the same.

Here we try to work together as a community to do research, lend a shoulder to vent on, discuss everything from bedtimes to schooling to meltdowns (the Spectrum version of a tantrum) and just be there for each other. We have many parents who have been around pediatric development problems for years and others who are as new to all of this as you are. Please feel free to join in the conversation or start your own threads anytime you want. Whether you are here with a specific question about a certain trait or problem, or whether you just need someone to complain to about unsupportive friends and family we are here. We are open 24/7/365.

Again, welcome to the board. We look forward to getting to know you and your son better.

Peace,

Candes



Avatar for aedtob
iVillage Member
Registered: 04-04-2003
Thu, 09-18-2003 - 12:06am
Hi Veronica, I was reading your post and IMHO you are on the right track to get him evaluated for autism. My son (2.9 years old) was diagnosed just after two years and we got him into an intensive ABA program (appled behavioral analysis) program. It has made all the difference in the world. I don't know how well EI evaluates for autism--but I urge you to go to a neurologist or psychiatrist who specializes in autism spectrum disorders. He or she will be able to give you the clearest eval. Remember, autism is not diagnosed by a blood test or anything else other than observation. Also--if there is an autism diagnosis check and see if your state covers an ABA program for your child. A home-based program is essential for treatment. They typically start with 20 hours and then as the child gets used to it--increase it to 25 and then 30. It can do much to help narrow the gap and develop language skills. Keep us posted....good luck...Abbie