So are there support groups for difficult child's? Her diagnosis of him (I thought maybe I should ask cuz I might need to know that ) was severe ADHD, tic condition (she had another word for it) and dyregulated something mood disorder.
First (in reverse order) I would rapidly develop a wide-open mind on the diagnosis issue. If this doctor feels out of her depth with treatment, it could be because she was already out of her depth with diagnosis. Remember, difficult child 1 was diagnosed as Aspie at age 14, when I had specifically asked when he was 6, "Could he have some form of high-functioning autism?" and been told, "Definitely, absolutely not."
Now to support groups - they are where you find them. Or make them. This site here is a support group.
Support groups can be formal, or informal. They can be huge, or small. You can join an established support group (and play by their rules) or start your own. I've done both.
An example of an informal support group - difficult child 3's drama class. It is a class for kids in our district, kids with "learning difficulties" of various kinds. While the kids are in their class, us parents sit and have a cup of coffee in the next room while we wait. We chat, we gossip, sometimes someone will vent about a problem (such as a specialist dumping our child as a patient) and sometimes other parents who have been there done that can provide the benefit of their experience. We joined this group when difficult child 3 was still struggling in mainstream. It was this site, and that group of parents, who helped me fight the district dept of ed and get difficult child 3 into correspondence school. Another parent at drama class had a child a year ahead of difficult child 3, already enrolled in correspondence. Their experience helped a lot. Then just last week we had a school expo day and another parent from this drama class asked to come along with us to have a look, her son will be old enough for this school in 18 months' time.
A more formal support network, if you want to start one - ask around. See what is already there. If there is a gap, find other like-minded people. Advertise in doctors' surgeries, in libraries, in the local paper. Arrange to meet on neutral territory to begin with - the library, or a local coffee shop. be prepared for anything in terms of opening the floodgates with conversation, or conversely, people being too ashamed or scared to say much. You can be formal in procedure ("do not talk all at once; use the talking stick") or informal (noisy, but everyone feels they had a chance to vent). You can also adapt as time goes on.
There are some important rules, but you can only invoke those rules in a more formal group. No personal attacks; no breaches of confidentiality; give people personal responsibility; don't tell them what to do, just lay out the range of possibilities and let people choose for themselves. Don't monopolise. I remember drafting up some detailed rules once, in consult with a leading psychiatrist who personally didn't like support networks back then, but I think he does now. The rules were a compromise with him so he would stop badmouthing the concept of support groups and allow his patients some opportunity to join.
You also need to realise that sometimes in a support group, you can get some weird people. Some of us are genuine. Most of us. But you do get the occasional ratbag nutjob who takes over and controls things, bending them their way. I've encountered a few of those over the years too. A parents' group is less likely to get these, but it can happen. Again, at difficult child 3's drama class there are a couple of the parents who I have reservations with. One of them tends to abuse a friendship - she gets people to do things for her in a crisis, then keeps you hanging around doing things for her. She is always running here and there with her kids' activities and one time when she was overcommitted for a couple of months due to seasonal work, it looked like her daughter would have to drop drama class, for lack of someone to collect the girl from school. So I offered to collect the girl for that period. Then in the new year, when the seasonal work was finished, the mother was still expecting me to collect the girl. I did it for a while then began to feel used. I would collect the girl (and the school's rules and collection times would change and nobody would tell me - it was becoming more difficult for me) and then have to fill in time for a couple of hours before drama class. I would buy snacks for the kids, I never got reimbursed for snacks or even fuel. I remember one day before Christmas I had dropped in to a plant nursery and bought a tomato stake. The girl was eying off some seeds and wanted to buy some for her mother, so I bought them for her to give to her mother as a Christmas present. I didn't expect anything back, I had a spurt of generosity. But there was never a mention of it which I thought was odd.
I finally had to stop, because we were taking a term's recess from the class (we were going to be away overseas). When we got back, we found that someone else had been hooked into collecting the girl. Again, poor communication and no appreciation. I do quite enjoy talking to this woman (although I notice the others to tend to avoid talking to her for long) and I like her daughter. But it was really hard work at the time, and a serious inconvenience that was never appreciated. In an emergency - fair enough. But when the crisis is over, you should stop using people, or find a way to reciprocate.
So go carefully if you go down this path. It can be very useful for you, it can teach you a lot about your child, about yourself, about the system and about other people. But always be ready to detach if necessary.
Marg
