In my journey as the father of a special needs child, I have learned a number of lessons. These are:
Lesson 1: Milestones are there for a reason – to measure progress or delay.
I read again and again of parents whose concerns were dismissed by the medical profession. This occurs from India to the USA. If your child is not matching milestones, it is an indicator of a possible problem. Doctors particularly seem to ignore language milestones, and not milestones about physical development. Language issues can be a pointer to cognitive issues and should be as important if not more important than the physical.
Lesson 2: If you are unhappy with what your medical advisors tell you, challenge them. “What literature says boys talk late?” “Why don’t the milestones matter here?”
Too many doctors believe that their title confers Godhood upon them. Crap! They are human. They err and they can and should be challendged if necessary. Remember you are the voice of your child and your kids deserve good service from doctors, no more than they do from schools and in particular from you. Challenging medicos is good service to your kids.
Lesson 3: If you are concerned take the initiative.
If you get no satisfaction from your doctor, psychologist etc, do something. If they think it’s ok that a four year old is not talking, do something, like go to an audiologist, or even change your medical service providers.
Lesson 4: Your belief dicates your path. It may not pan out as you hoped, but if you don’t believe, it is far less likely to work out.
This is so critical. It is easy to see the negative. Indeed some people emphasize the negative as it puts money in their pocket. That will often appear like this, “There is no hope for your child. He/she is doomed forever, but… fortunately you came to me and for a substantial fee I can change that.”
If you stop believing in the possibilities within your child, it leads to two outcomes:
a) Despair and loss of hope.
b) You end up trying less or not at all and the hopelessness becomes a self-fulfilling prophecy.
Lesson 5: Autism is a great money spinner for others.
Not everyone who listens to you, has your or your child’s best interests at heart. Autism is a money spinner – a huge one and there are people out there who will push anything to get your buck. And I mean anything. These have included:
If one loses belief and becomes desperate, then you face the possibilty that your pocket and your child will fall victim to people like this.
Lesson 6: There are also great people out there, who care and will be wonderfully committed.
The corollary of lesson five. Of course people are entitled to make money, to be compensated for work done, but this does not mean that unlike those who push snake oil, that people have to be about money only. There are wonderful people, professionally and in support groups who will help to the best of their ability and care for you and your kids.
Lesson 7: Research everything. If an approach is suggested, research it. If a medication is suggested research it.
With all these approaches valid and invalid, research them. Research the names associated with it. Researching chemical castration will bring up the name Geier. Check that out as well as Lupron, the drug they used. Check the medical journals about the therapy. Just make sure they are valid medical journals and not quack ones.
Lesson 8: There can be a strength in showing your weakness.
If people don’t know that there are times when you just feel you can’t take it anymore, they might admire your strength, but will never know that there are times you need to rant, to scream and to cry. Parents, all parents, but particularly special needs parents need a pressure release valve. Showing your weakness enables you to use that valve and then the system stays whole and does not burst.
You are the expert on your kids. Not gran, not the teacher or the doctor or the know-it-all who will rebuke you and/or your child in the shops. You are the expert and you have the obligation to talk for your child and the right to be heard.