You would find a tremendous amount of resources, help and support in many forums on the net (some of the resources on the net are listed on the side). For us, this has been (and still is) a journey, for the past ~10 years... Based on our experience here are a few things you may want to look at first:
- This is a journey, its never one and done - there is no magic cure. Its very much like looking for a best possible life for a Neuro-typical child. There is work that needs to be put in both cases; its just a bit different for our children.
- For special children, the intervention is (my strong belief) "parent driven, specialist aided" (specialist also encompasses teachers at school). Read as much as possible yourself; ask questions, never be "shy" to propose what you need from school, your aid, intervention specialists etc. Take your time to read without stress.
- Share your situation with your family and friends. Once people are aware, the amount of help or how much they'd do is tremendous. What we learned is, if we don't share, then our friends suspect something is different, but are polite enough not to pry or offer help (so that they don't offend you)
- There is ENOUGH TIME. Do not rush. It just needs adjustment of your outlook -eventually, be it a normal child or special child, the parents want the child to live independently after them. So, you do not need to rush - there is enough time for the child to develop. Maybe your child would not pass 12th at 17, but would do it at 23 - so what? (and possibly, for independent living, passing 12th may not be required!!)
- Set out clear goals for yourself and the child - the goals could be split into micro-goals over a period of 3m. Take it one at a time - remember you have enough time ! :-)
- Start your financial planning - plan as if you'd have to support your children beyond you. Look for some annuity based income that starts later in the life for yourself and the child. Plan as if you have to support his/her life span too.
- As a family, spend time together - although its easy to say this, this has been one of the areas that has been tough for us too, given that we all have our own needs, distractions and interests.
- Finally, stay very very positive. One thing about our kids are that they are very perceptive. It always appears that they sense negativity and it affects them. Once you are positive, you will see doors open and pathways appear. Expect the lows from your kids, and enjoy the highs ! Expecting the lows helps you to stay positive.
I didn't talk much about intervention, since there are so many of them out there; all of them aren't great for all - you just need to research and see which (or a combination of what) would work for your child. We have listed some of what we do on the links on the side... and some of our own thoughts and actions in the blog.
I also would advise the parents to figure out a technique for themselves to be able to sort out the information flood coming at them and organize it in a way that they can implement it with their child, stay plugged in, watch the result and modify/drop as appropriate. There are several complexity methods to it - you could google cynefin framework, DSRP framework etc for that.
Good luck and all the very best...