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.

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.

Thanks for any advice.

I put my other thread because it had so much information about my son's progression that if any one had any advice or anything to add...you would at least know my story.

Thanks again.

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! :)

Okay,
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.

Thanks for all your support and listening.

Hi CantDoItAgain,

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 (www.thesoundlearningcentre.co.uk). 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.

Hope you find something helpful.

Hi Picali

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.

Suzy

Hi.

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.

Good luck and let us know how it goes!!
nakama3

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."

Hi

Maybe I am the Ugly Duckling here: a man among women and someone who has no hands-on experience with autism, just read a little bit.

You probably know about the link between gluten (in wheat) and autism?

So I think that a first step towards an improvement, if not the cure, of autism is to establish a healthy diet for the child, eliminating wheat and dairy, which are the worst offenders.

There's a lot to say about what a good diet is, so maybe this is a topic for another thread.

I have also heard about the potentialities of wild mushrooms in the treatment of autism: regeneration of neurons. Please search information on Mental Clarity (Laboratories: New Chapter).

Ty for reading this.

JC

Okay,
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.

(((Cantdoitagain)))

Good luck to you and your son.

Thanks Cat.
I just thought I would give an update. My son is still undergoing tests since June 06....it is a long process testing for metabolic/mitochondrial diseases. However, we finally got him booked for an EEG and MRI and in the next 3 months...things should be clearer.

Laura

Good luck to you, Laura.

Melanie,
Thank you....my son is almost 4 and no sign of talking yet....well he just started babbling a little. Before that he made no sounds.

We have tried sign language and you spend months teaching him a sign. He will use it for a day maybe a week and then not do it for another 6 months or a year. We are still using sign in hopes that one day he just picks it up. As for PECS....he loves to put the pictures in his mouth and does not look at them. He also does not exchange things with us or ask for things....not really sure what to do for him in terms of communication.

thanks for your recommendations and your hope. I still have hope that one day he will talk...but there is small thoughts that he will be non verbal. Right now I would be happy with him being able to communicate his wants/needs/dislikes....

Laura

Hi Laura

I replied to you on my post, but I'll out another one here, just in case you didn't get a chance to check the other one.

It's nice to hear how you and Angus are doing. You are blessed that he's able to Cranio twice a month, now. Liam still will not tolerate any. We've been trying to find a time in the evening, to have it done after he's in bed, but it's so difficult to co-ordinate. At Ot, this morning, he swang till he was sick. She said to me, look, he's falling asleep! I haerd that and I panicked, as he always looks like he's falling asleep right before he gets carsick. So, I said "don't let him fall asleep, or he'll throw up!" the second I said it, he did. All over himself and the swing. It was made of Lycra, and will be so hard to clean. He threw up 2 more times in the cab, on the ride home. She explained to me that it was vestibular overload. boy, was he overloaded!

But, in general, thinkgs are going pretty well. There's always ups and downs. We are going back for the second half of his developmental assesment on Tuesday, and we're supposed to get a diagnosis then. My stomach already turns every time I think about it. I'll update, of course after the dx.

Let me know how things are going with your family.

Happy New Year

Suzy

Hey Suzy,

Carrots...bunches of carrots.... Angus said Cookie and STinkie on the weekend. The first words ever that were also used appropriately and purposefully. Now he is silent again and no words during the week, but we heard them. Beautiful sweet words.

My son is still undergoing diagnosis. The DP feels severe autism and he is still being tested for mitochondrial diseases. We have an MRI in March. Finally the wait was huge, but soon it will be over.

How is Liam? how are you?

Sorry it has been such a long time. I got the flu at the end of Jan and then a cold and I am just feeling better now. It has been a long 3 weeks.

Laura

I can surely echo your success with alternative approaches with my grandson, Drake. At 3, when he was diagnosed, he was nonverbal. Our first goal was to get him evaluated through the Pfeiffer Treatment Center in Illinois. They basically do metabolic testing by checking blood, urine, and hair. He was them put on different vitamins, minerals, and amino acids that were found to be lacking or malabsorbed in his system. In addition to that approach, we put him on a casein and gluten free diet. Finally, he started attending a developmental preschool through the local school system.

At 5 1/2 yers old, he is talking up a storm. He is a bright little guy, and before he left for Texas a couple of weeks ago, was being successfully mainstreamed into a kindergarten class.

I think the key can be early intervention. I realize that I am saying that from our own experience with Drake, and I don't want to imply that success can't be reached if steps are taken later.

If a child has severe sound sensitivities, I would recommend the book , Sound of a Miracle, and encourage you to look up AIT training which could bring some relief and help as well.

Best of luck to all of you fellow travellers on this path we have been presented. I can honestly say that for all of the challenges that come with raising autistic children, there are blessings as well. It might be a little harder to find them at times, but they are there!

Take him to a different doctor... Ideally a developmental pediatrician. He needs a diagnosis...he sounds like he is on the spectrum. As far as other neorological conditions as mentioned in some other replys, an MRI may be ordered to rule out. 2.5 years old is plenty old for a diagnosis. My son was 22 months when he was dx'd. Please dont delay and take him to another doctor.

I agree with most of the responses here about getting him dx'd. That will give you the smoking gun your looking for. What I believe is a way to give us as parents a direction to head in with regards to treatment options. Until that dx is done you feel like your in a dark room looking for the light switch.

The path I choose with my guy was when he was dx'd at 2 and he too was non-verbal, able to understand most what we were saying too and would take our hands to where and what he wanted.

The best way for us was creating a Picture Exchange Board on the side of our fridge. I am a photographer, so I took pictures of all that related to his wants and needs on a day to day basis. I laminated them and the word of the item underneath the picture. When he would go an get the picture (for example) of the peanut butter jar and the picture of the jam, and bread. I would point to the item and the word and repeat it to him, "Do you want a peanut butter and Jam sandwich?" At first it was a grunt and then it progressed to a head nod and then to a yes. I would say after the grunt "Oh Yes, that is what you want" also nodding yes.

I made these boards and had them in his room, the bathroom and any other room that he would need to articulate his needs in some fashion.

He is now 9 and a half and fights for his time in the spot light of each day to tell us what he did, saw or learned with his siblings.

The best approach I have found is to be patient (mostly with yourself), be creative to YOUR child's needs and have a sense of humour and the challenges you, your family and child face you will all make it through.

Regards,

JJB

Suzy,
Be careful of your child swinging, falling asleep and then throwing up. It might be that the swing is causing him to have a seizure.

Lisa

MRI, EEG all normal
Went to DP and she diagnosed him as PDD-NOS b/c she felt there are underlying metabolic reasons that my son is autistic. Son is undergoing more blood tests that are being sent to Texas. It will take 4-6 months to get these tests back.

Suzy are you still here....how is Liam doing? How are you?

More carrots......He is kissing.......and hugging and some words have come out. The change btw Jan and now are huge for him. He is 4 and is only up to a 2 yr old on some things and still 12 months on others...but he is moving in the right direction.

I feel like a bunny there have been so many carrots.

L.