Hi, I have posted before asking if it were too early to diagnose my son.
Any way my son is now 2.5years. He did not get a diagnosis because the DP wanted to do the wait and see approach. My son is non verbal and barely makes any noises. He does grab our hands to drag us where he wants to go. He does look at us once in a while and understands some simple instructions.
Everything about him is inconsistent. I have 4 children in total from ages 1 through 5. He should be learning from these children in leaps and bounds and really doesn't. I am often left feeling like I am not doing enough. I took 10 months off of work with my husband to work with my son one on one.
We were getting some therapy but it was once a month if that and most of the appointments are to tell us how to teach our son.
I guess I am just looking for some more motivation to push on. I love him to pieces and he is the happiest child when he is not screaming and slamming his head on the floor.
I guess the hardest thing is not knowing. It has just been a bad week...all of the children are sick and when he is sick he regresses. It is so hard to watch all the hard work fade.
Last edited by Cantdoitagain; 09-21-2005 at 11:58 AM.
hi, you certainly have your hands full! you most definitely need to get your boy assessed asap, in britain they will diagnose a child with autism at 2.5 years, i have heard of children being diagnosed in america who are as young as 18 months, you need a professional on your side who sees in your boy what you see, i was lucky the speech therapist saw in my daughter what i saw, there is no point in waiting and seeing as valuable time is passing, your son sounds like hes showing alot of red flags, and the sooner he's assessed the better, keep pushing and insisting, keep going to your G.P until he/she gets so fed up of seeing you, that the better option to him/her would be to refer your son, i really feel for you as you sound overstretched as it is, goodluck to you and keep us posted.
Hi Cantdoitagain; I don't know if you remember me, but I posted to you a while ago about your son. I'm sorry to hear you are having a bad week. I can totally appreciate it as my week last week was a tough one.
I have to tell you that if I were in your shoes, that wait and see approach would not be working for me. If he has PDD, he would be entitled under the Birth to three program in your state for many more services. My son has made a tremendous amount of progress in the six months since his dx due to all of the additional therapy he is getting. I would not let it drop there because it's only six months until he turns three.
Did the DP do a full evaluation ? What was the Dr's reasoning behind the wait and see approach?
Thank you for your responses and yes Jeffreys mom I remember. I have been lurking on these boards for some time, I just never know what to write.
You see my DH is fine with the wait and see approach. I feel like I am not doing enough for my son. My DH doesn't want a diagnosis and I am fighting him all the way. The therapists have dropped our son because he is starting preschool two days a week. The good news about this preschool is that my son has his own resource teacher and we are meeting with her next week to design a program for him. As well, the teacher in charge can do a preliminary assessment on him when he gets settled in. Then this may open up my DH's eyes.
I just hate feeling like I am not doing everything I can for him. I am constantly doing things with him and my DH just leaves him to open and close doors or to wander around the house aimlessly with something always in his mouth.
I feel like I am failing him. My parents say that he is progressing and he is...but I don't want to lose any precious time and I don't know what to do. We have an appointment in October with the "team" of therapists that were assigned to us. But I think the "team" switches over once he is three. I am from Ontario Canada by the way......I think the US is more organized where PDD is concerned. We just haven't got the support and I don't know how to get it especially since my DH says we don't need it.
Every day it is more evident that he is different. I love him for his differences and wouldn't change him, but it is hard not feeling horrible that I am taking the easy way out and not helping him. Maybe I should tell my DH off. I just don't know. The therapist when we did have appointments didn't do anything really. They forced him to play at a table and he would protest and scream and hurt himself. The appointment would last an hour and that would be it. No talk on strategy no help with dressing, brushing teeth....I went to ST and OT and asked specific questions and they just said that I have all the strategies and I was doing fine.
I just don't want to look back 10 years down the road and know that I could have helped him even more.
I am sorry your having a rough week. DOn't feel like you aren't doing enough, you are doing alot! I read a book, Children with Autism: A Parent's Guide, edited by Michael Powers. This book helped me put my feelings in perspective and I think it helped me alot. You may want to check it out.
Are there any other specialists or university evaluations you can get an appt. to see? I know how you feel about losing precious time, I feel the same way. Hang in there!
We have some answers...if you look at the other two threads
"It is too early to diagnose Autism" and Metabolic testing you will see some of the journey we have been through.
The DP probably did not want to diagnose autism because he suspected something else affecting him but did not want to worry us. Mitochondrial diseases have no cures and many children die young. They are very rare and I guess not a lot of doctors know much about them.
I'm in the UK and doctors here have a similar 'let's do nothing and let everyone struggle approach'. My little boy has responded really well to three types of complementary treatment - cranial osteopathy, homeopathy and a combo of treatments from a place here called The Sound Learning Centre ([url]www.thesoundlearningcentre.co.uk)[/url]. I found that, not only did his symptoms improve, I felt a lot better about doing something other than watching him. I understand completely what you say about feeling like you're not doing enough - I feel that all the time, although I am learning that I need to accept I'm doing as much as I can.
Liam has also benefitted greatly from osteopathy. Laura (can'tdoitagain) and I actually have an ongoing thread discussing our child's treatment and results. It's amazing, isn't it? I had my doubts at first, but I'm a true believer, now. I look forward to his osteo treatments, and so does he.
PLEASE DON"T WAIT!!! He sounds like he is displaying some red flags...nonverbal, hand leading, head banging and screaming. What good does it do him if you wait. Getting him diagnosed will only help him. He'll start the services he desperately needs. If it winds up that you take him to the doctor, and it is determined that he is not autistic, what will you have lost but a few hours of your time. "wait and see" is not a good idea. My pediatrician advised me to wait and see. I waited 3 months, and I still regret it.
Please take him ..At least you could get speech started if that's all he needs.
A little "push" will not hurt him. His frustration and behaviors will only increase in intensity the older he gets, as he'll begin to understand his verbal limitations.
Hi I have son that turned 3 June 2006 and he has a bad temper wasnt talking, dragged us to where he wanted us to go, all the "red flags" as a matter of fact he had me crying from frustration and people would say "are you sure there's nothing wrong with him?" So I started believing them took him into pediatrician then took him to a get an evaluation and there was nothing wrong is what they told me. Sure enough all of a sudden my son is talking!!! Just this month he has started to put sentences together on his own and 2 1/2 there was no words at all not even mama! So sometimes believe it or not doctors do know what there talking about. Have faith he may start talking.
I do not know what age your son is but anyway it does not mother. I heard from my friend that her son was diagnosed autistic at age two. Maybe you should look for different doctor and if he does not help you can go to the next and next until you will find the answer. The doctors have different opinions, and for sure finally you will find someone who will help you. You are the mothers and if you think that something is wrong you that your son has a problem. In addition you can compare your son to other children and you see the differences.
Some children start talking later; it is never too late to be verbal. From my experience I know that what he learns it stays there and continue your work it will pay off some day. The children observing and decoding the information and some day they express themselves at the level that you will be suppressed.
I heard some cases that the child did not talk and suddenly started talking, talk to him and he for sure is listening.
Maybe he has some medical problem and he needs to be observed by specialist and they maybe will be able to help him, does he hear this is important pike of information to make sure that he hears properly.
It's never too late to get help-and never too early, either. Early is best for the child, because early intervention will minimize the number and severity of problems he or she will have to face in the future. It is never too late, as others stated, for a child to talk. The ideal is to catch the signs early, when the brain is at its most "plastic" and able to respond to help. Learning is tougher at older ages, but not impossible. I'm a firm believer in the "nothing is impossible" mindset. The four minute mile was considered an impossible barrier to break until a young English medical student named Roger Bannister, through determination, intelligent training, and hard work, proved it could be done. Loving and teaching and never giving up can help all of us break our personal "four minute miles."
Thanks everyone, but I should have rewritten our last year here. I started this post in 2005 and I just put an update on it.
My sonis now 3.5 years old and he is being diagnosed with a mitochondrial disease and the doc says he IS autistic. We will be seeing him in a month to see which one.
Mitochondrial are organelles found in your cells that are responsible for turning food into energy. When these organelles do not function properly your body "pays" the price. Since your major organs use the most energy it is these cells that suffer the most detectable damage (brain, heart, liver etc.).
This is a rare childhood disease that the docs cannot cure. There are some treatments like change in diet and supplements and keeping hte child away from stressors, but no cure. Some children die before the age of one their disease is so severe. Some children don't contract the disease until they are 10 and live in their 20's. The docs can't really tell how the disease will progress, but think of your body as a 6 cylinder car only running on 3 or 4 of them.
We meet with the doc in a month or so when all the test results are in and hopefully he can tell us which mitochondrial disease my son has. He is also doing research to prove a link between autism and metabolic/mitochondrial diseases. If you type in a search on the web and look into mitochondrial diseases and autism some of you may find some interesting information.
Any way, I know that I have been searching for information and I thought I would post this here just in case it helps another child in the future.