Tara (I hope for your future sake that is a pseudonym), there are things you can do NOW, for you and your boys.
In a way, we had similar problems. The first pediatrician we had for difficult child 1 turned out to be a real weirdo, he diagnosed ADHD and then began to 'play psychiatrist' with me because of my chronic illness, which he arrogantly decided was primarily psychiatric in origin. The second pediatrician (we transferred when the first began to muck around with difficult child 1's dosage, purely to make me angry and get SOME kind of emotional response from me) was also weird - he seemed to be very ADHD in some respects, I look back now and wonder about unmedicated BiPolar (BP).
The third is the current one, still not a perfect fit and now that difficult child 1 is nearly 25, it's time to change to someone for an adult.
We still had to get our kids seen by someone else, to nail the diagnosis into place - our current pediatrician is a lovely guy, but a wimp unwilling to commit to a firm diagnosis.
And the reason I said to begin with that I hope you didn't just give your real name, is because being incognito gives you the freedom to say things like this and be fairly sure that whoever you are talking about isn't going to track your online communications and know hat you are saying about them. You need to feel free to vent at times, to say what you really think. Sure, I could be tracked back to my real ID from this site, but I avoid telling people I know about this site.
Things you can do now:
1) Go back over each child's history and make a diary. I do it on the computer. Arrange it how you want, even do it as if you are writing their biography, if you like. I began with the pregnancy and the birth, but you can always go back and fill in gaps.
2) Diary no 2 - this is the Communication Book. You would need one for each child, probably. Certainly one for the worst one. It's a marvellously simple concept. You buy a cheap exercise book (I bought a bundle of them) and a clear plastic sleeve (like the easy exercise book covers you can buy in the supermarket). I printed out a page that said, "difficult child 1's Communication Book. Friends, family and teachers, please write in here anything relevant or of interest. Please read it when he is in your care, to help you know what to expect."
I drew a rainbow across the cover. I also made a note of the book number - as a book got filled up, the next book was labelled "Book 2" and so on.
I would write in each book an entry when I felt there was something important to share with the teachers. "He had a rough night, he had nightmares, we think from watching 'Finding Nemo', he was upset about Nemo getting lost so far from home. So you might have a problem with him on the school excursion, he could be a bit clingy."
The teacher might respond with, "He WAS a bit clingy, I'm glad you told me why because it meant I was able to talk to him about it. He was also very tired, he slept on the bus on the way home, I think because once he knew we were heading home, he felt safe enough to relax and sleep."
The Communication Book replaces many of the classroom steps after class conferences that you would otherwise have. I always viewed it this way - the teacher had just had six hours of intense close contact with my difficult child. The teacher deserved the chance to get away as soon as possible after school and get home to a stiff drink. Mind you, there will still be the need for formal meetings, but you can keep these to the essentials and they will also go better when everyone has access to better information. The other side of this - never get angry with the teachers for expressing anger or frustration. Who knows better than you, how angry and frustrated your child can make you? Instead of getting angry, be grateful the teacher feels safe enough to be honest with you.
3) Meetings with school. You can use these to help get the extra support your child will need. Much of the info on this site in terms of the sort of support that is available, should also be relevant for you and your kids too. These are basic human rights issues, most Western governments at least (and any others in the world that can afford it) try to meet these needs. The departments and topics may have different names; or they may not. Check out the Special Education forum here for tips and ideas; they should be transferable.
What SHOULD happen - you should be able to go to your son's school and show them the printout, tell them, "I think we need to do some further enquiries with a view to getting some appropriate support in place for the school to give him the help he needs."
The way this works in both Australia and the US (correct me if I'm wrong, folks) is that the funding for this support comes from the federal government, but the administration of it is either state-based, or the local school district. Once you identify your child as needing services, there should at least be the beginning of someone stepping forward (usually school counsellor) and saying, "We can do this, but you still need to do that," which at least gives you a sense of direction.
A diagnosis of ADHD gives you some limited support. A diagnosis of Asperger's can open many more doors to understanding and support. However, it has been our personal experience that it often doesn't go far enough. And it's not just me being difficult or fussy - where difficult child 3 is now, the support is overwhelmingly fantastic. We're delighted with the level of support he now has, and increasingly appalled at the lack of support he had earlier, bordering on abuse.
4) Be prepared to become a strong advocate for your child - a Warrior Mum. This isn't easy, in the face of condescension from academics who OF COURSE know better because they've done a course about it. You only LIVE with it. You will need to learn to handle problems with a combination of tact and firmness. I live in a small village and felt a strong need to continue to get on well with the people I had to liaise with; but my child comes first. It was a tightrope walk at times, there were times when I said something harsh which resulted in a teacher (and past friend) having hurt feelings; I had to learn to apologise but without compromising what I had said. Sometimes it was a simple matter of clarification. I have at times threatened legal action; I have accused them at times of discrimination and sanctioning bullying to the detriment of the wider community. But I am still good friends with these people, we say hello in the street, we stop and chat. That takes effort on both sides and it is worth the trouble. I was told recently by difficult child 3's godmother that she had been in conversation with one of these local teachers. There had been a staff meeting about one child in particular, a child with special needs but who needed some answers and a diagnosis, fast. The teachers were feeling frustrated at the complacency of the parents in the face of the child's apparently increasing deficits. "What we need," said difficult child 3's former Kindergarten teacher, "is a Marg to get in and fight for this child."
I was flattered.
To get your own child some help towards diagnosis - yes, a private diagnosis costs. You need to find someone capable of diagnosing as well as someone who is going to do the job properly. It took us a while to find the right people and we travelled across Sydney (a big place geographically - it's one of the biggest cities in the world in terms of the area it covers). I made a point of getting ALL my children seen at the same time, because it was becoming apparent that there was some sort of problem in common and I wanted that seen. I would hear about a doctor, I would telephone, talk to the doctor, make an appointment and then (eventually) get my kids there to be seen. Only to be disappointed over and over, to find this person didn't have what it takes to really find out. Often I was led astray by a doctor who was curious but ignorant. One doctor asked me to come in the next day - I was thrilled at the short notice. He said over the phone that he could help, he knew he could. He gave me the name and phone number of a clinical psychologist who was his personal friend who would assess all three of my difficult child kids for a family discount. Then he saw my kids - sat and listened while I filled him in, while behind me the kids were playing happily but noisily. He then (when the volume apparently reached his breaking point) stood up, shook my hand and said, "I really hope you do find the answers you're looking for. Do let me know if you ever find out what is wrong."
I was livid - he'd promised to help, to take these kids on and fight for a diagnosis for them - and then dropped us like a hot potato. I think he only saw the kids out of curiosity and frankly I could have used my time to much better effect than simply drive across a big city purely for his entertainment.
When I rang his friend the helpful psychologist, she was very angry. Not only were her tests inappropriate for what was needed, there would be no bulk discount and he had no right to offer one. She was booked solid for the next 18 months and each child would have cost us over A$1000 to test. We needed cheaper, faster answers.
Where the help eventually came from - we rang the state/federal offices of the Autism Association and asked to speak to an advisor. I found out exactly what supports they had available. I had to join the mob in order to get a lot of the info and support we needed but I figured joining was a good idea on a number of fronts. I also looked for any local support network. If there isn't an autism network then look for a local support group for kids with learning problems. The law of averages says there have to be others like you, maybe many others.
Think about how much information there is, on this website. I have learned so much here - it has made me strong, a better advocate and has helped me make some very difficult decisions with confidence. But a local support network also gives you local information which is invaluable.
If there is no local group, then start one yourself. Again, I've done this as well. You may not need to do this for long.
Also worth talking to - the local GP (especially one you've been using regularly). You can ask the Autism network for names of pediatricians or clinics that can asses your child. They probably have their own secret "fink list" and although they won't be able to tell you if your previous doctor is on it, they will like to know of your experiences and may use a phrase, "I would suggest you get another opinion," if they find out that anyone you're currently seeing is in the same category. (I know about that phrase - we used to do this with a support network I used to do volunteer work for).
We had the kids seen by a local government-sponsored community health network. They weren't great, but they WERE free. At times I was made to feel like a neglectful, bad parent but I put up with it for the sake of my kids. I figured I could fight them after I got the answers I needed.
From that clinic, we found the name of another clinic with a better reputation. I used every string I could to get the kids seen by that clinic. Slowly all the pieces fell into place.
What is needed in Pervasive Developmental Disorder (PDD) assessment is a multidisciplinary approach. But they don't all have to be at the same clinic - we got the name of a really good clinical psychologist (private, a bit pricey) from the Autism Association. She did her psychometric assessment on all three kids (and gave us a family discount). But she couldn't give a diagnosis on her own. So we pulled in the Speech pathology assessment reports from the free clinic (they showed that difficult child 3 had a significant language delay in his history, even though by this time his language was in the normal range). This was enough for a diagnosis of autism. This diagnosis was confirmed by the specialist clinic a year later.
For a while we lurched from pillar to post, as I found out about this person and rang them, only to find it was a dead end. I would get six names and make appointments with all six, to cancel five of them if the first lead turned out to be THE ONE. Various specialists would give us enough for the school. One bloke gave a diagnosis but referred us on. Trouble was, the bloke he referred us to was not seeing patients in clinical practice.
The upshot of all this - difficult child 3 is now 14 and we have only JUST been told that yes, we CAN have a neuropsychologist assessment in Australia. All these years, I thought it wasn't possible.
So, my friend, from here you and I are on the same level playing field. You are your child's best advocate. We can support one another, advise one another, but from here each of us is in the same boat.
Right now you're angry at all the time that has been wasted. I don't blame you - we had a lot of time wasted also. But you can USE that anger to fuel you now, to drive you forward to get answers.
if all else fails, writing letters to your MPs can help. Write to your county's Federal Health Minister and send copies to the Opposition Health spokesperson. Put "cc to..." art the bottom of the letter so the Minister KNOWS his opposition counterpart is also in the loop. They WILL fob you off but hopefully will do so by sending you some names you can try.
It is best to at least make it clear in your letter just how far you have already enquired.
One way or another, you and your children deserve some answers and support.
Let us know how you get on.
Marg
