Hi, CFA, welcome.
You asked if any of us have kids with similar sets of symptoms.
Well, mine do. Both my boys have been through similar manifestations. I'm not saying your son definitely has autism - it could be something else. But I would put it on the shortlist of possibilities.
The thing is, when we as parentshave a kid like this, we so desperately want some magical geniius to come down out of the sky and make a pronouncement which explains everything, then hand us a bottle of pills with the words, "Take one a day, it will fix everything."
Unfortunately, it doens't work this way. We struggled for years searching for someone with the answers, before I looked in the mirror to find the one person with the best understanding.
That doesn't mean I ignore all professional help, or shun experts. Not at all. But instead of me relying on their god-like wisdom, I look on them as tools in my armoury, as facilitators.
What we needed and what has worked for us - the multidisciplinary approach. Idally, you need a good GP to be the spider at the centre of the web, to coordinate it all and be the connection between all the experts. But with something like autism (or whatever else your son has), what ALSO works, with equal validity, is YOU at the centre of the web. YOU coordinate the experts, to collate the reports as they come in and get copies of those reports to where they have to go.
So what should be your startioong point?
First, keep a good diary of your child. Go back and write what you can remember. Any details you later recall - add them. Write a book. Keep updating. Write the interesting stuff, the scary stuff, the whole lot. We began a Communication Book which travelled in difficult child 3's school bag. It was parent's responsibility to handle the book at home and to write in it for the teacher. At school it was the teacher's responsibility to read parent's notes and to in turn write down information on anything of value. You need to NOT make this the child's responsibility in any way - this book is too important and frankly, the child has no investment in this process. And shouldn't have.
Also with a Communication Book, you have to be VERY forgiving of what people write. If the teacher writes, "I could have cheerfully throttled your son today, and laughed through the entire process," you have to be forgiving. After all, surely you understand that feeling? Your aim, jointly with the teacher, is to find out WHY this happened, so you can work as a team to find out how to prevent this.
The value - sometimes one or other of you will spot a possible connection. Perhaps his behaviour is worse when he had a rough night the night before? Lack of sleep can be a problem. We found a connection - if difficult child 3 was coming down with a virus, his behaviour would be horrible for the three days BEFORE symptoms showed up. Then as he recovered, behaviour would be bad again. But while he was feverish - he was fine, behaviour-wise.
Next step - once you have made a list of his most obvious problems, search out medical experts who deal with this area. For example, we were worried about difficult child 3's language delay so we organised for him to be assessed by Speeth Pathologists. This was independent of any other expert. And the Speech pathologist said, "How is his hearing? That can cause language delay."
So the next expert - we had difficult child 3's hearing checked out (normal). OK, the test was normal, but having had it done, having a report that said, "His hearing is fine," was actually very important. It saved a lot of time.
Next - we had a clinical psychologist assess him. Her report showed which areas he was functioning well in, and which areas he was badly behind in.
I was keepnig copies of al lthese reports. Individually they gave no answers. But when they were all put together and placed in front of a pediatrician who specialised in this sort of problem - he was able to join the dots and answer the questions.
We could have gone to the pediatrician to begin with. He would NOT have been able to tell us anything, not without the other tests being done. What was needed, was for each expert form a wide range of disciplines, to present us with a piece of the jigsaw puzzle. For alot of these problems, the jigsaw has many pieces each of them often looking very different. Individually we can't work out whaty the puzzle is a picture of, only when we begin to assemble it and connecting the pieces together.
But the person who has to oversee the assembly of the puzzle - is you. NOT a specialist, not a therapist. You. Because when it comes to your child, YOU are the expert also.
Now, to therapy. Again, you could take your child Occupational Therapist (OT) a specialist cwntre where children with the same disability are getting expert help. If one is available in your area - fabulous! But even that is never going to be enough. For maximum benefit, you have to use immersion techniques. You have to surround this child with constant therapy. YOU become a therapist.
An example - when we travelled in New Zealand we were impressed at the availability of immersion schools for children of Maori decent. These immersion schools surrond the children with Maori language, Maori culture and Maori life. A lot of these children don't begin to learn English until high school - and this, in an English-speaking country! But it works.
In the same way, a child with autism (for example) needs ongoing therapy and consistency. You could place your child in the best school available, with marvellous aide support and the best Special Education teacher i nthe world. But if your child comes home form school to a more typical family life where you have the same expectations of your child as for 'normal' siblings, where you use the same discipline techniques etc, and you don't modify anything you do - then you will be undermining what the school does. And what is far more likely - the palcement at school is generally only an approximation at best. The child has a harder time than most kids, just trying to cope each day. Whatever you can do to help the child learn how to adapt, is of great value. The more you can do, the better. If part of what you do is provide your child with valuable (and often expensive) therapy - great! But if you can't afford it, there is still a great deal you can do yourself, to help your child.
In our case we live too far away from services. Even the local education authorities have made some bad mistakes with him (and with other autistic kids). I've actually had to become an advocate to bring about change not only for my son, but for other kids in our area.
I'm not saying you have to go that far. But you need to be the sort of person who has the courage and confidence to. If you don't feel you are that person, then you need to work to become that person. Or failing that, find someone who is that person and attach yourself to their coat-tails.
Anyone can do it. You do what you can. What you can't do, you find someone else who can, and link in with them.
But you do need to stop looking for the single professional who can do this. You won't find one. Instead, you need to create one. Find someone who comes close, then work on them to educate them about YOUR son, then when they have enough information, ask them what you need to - "Tell me what you think is wrong with my child. Then tell me what we can do to help him. Work with me in this."
When we were getting difficult child 3 diagnosed, we had a series of people getting closer and closer. The Speech pathologist eventually said, "This is looking more and more like autism, it just needs a few more other experts to give their opinion in their field. But don't worry - the Autism Association will have people to help you and services for him. You'll be right form here on in."
The Hearing Clinic said the same thing - "His hearing checks out fine, yet he has language delay. Depending on what the psychologist says, this looks like autism. But don't worry, the Autism Association will look after you from here."
The pediatrician we saw said, "Given the other reports, this looks like autism. Get in touch with Autism Association, they have all the services he will need. You'll be well-looked after."
The problem with this - Autism Association is too far away from us, too thinly stretched and a non-profit organisation with little public funding. Why should they be expected to pick up the slack for such a huge problem? They simply couldn't do it.
We learned that a lot of things we had been doing, working it out for ourselves, were exacrtly what he needed. Some of our ideas were a case of us reinventing the wheel; some of our ideas were very new and have since been used to help other kids.
I'm not a psychologist. I'm not a Speech Therapist. I'm not a hearing expert. I'm 'just' a parent. But I KNOW we have worked wonders with this kid, and with his siblings.
This website also helped a great deal - we had reached a brick wall in some areas and people on tis site showed me how to take a few steps back, look around and see the doorway off to one side. I had been slamming my head against the brick wall when all I had to do was take a few steps to the side to find the open door. Far more effective, far less painful.
So welcome to the site. I hope we can help you.
A thought - to consider the autism possibility, look at the Pervasive Developmental Disorder (PDD) questionnaire on
www.childbrain.com and do the test on your son. Take the printout to whoever you takr your son to see. Keep a copy on file - the results will change as he gets older and more capable.
Whatever the eventual diagnosis, there are things you can do with each facet of his presentation. Treat it symptomatically if you have little other choice. Whatever can bring a little improvement can begin to help him cope in other areas.
Marg
I agree with MWM that you want to keep trying. Neuropsychs are a good option and so are developmental pediatricians. I'm just a mom, but your son seems to have several red flags for autism spectrum disorders. You may want to see if there's an autism clinic nearby.
