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To me, the crux of the problem is awareness and acceptance by the parents, especially the father (the mother knows by instinct whatever be the public posturing). In a marriage, certain things have to be discussed threadbare, sitting together and sorting out the issue/differences.
One of the major issues it seems is to make the husband (and at times both parents) realize the gravity of the situation.
While autism (or most special needs) does not mean the end of the world, it essentially means that in all probability.
1. It will be a lifelong condition, albeit with major improvements from ground zero in functioning.
2. As of today, given the knowledge of the cause and treatment of autism (which is as close as possible mathematically to zero), there does not seem to be any treatment.
3. Given these circumstances, the majority of the children would not be able to earn a living by themselves (nothing to be ashamed of, that’s what the landed gentry has done for ages),
4. Given that the kids will need a degree of supervision in their day-to-day activities (the degree may vary), it is imperative to finalize an assisted living facility. (This can even be thought of as a real estate investment. If the child is among the present average of 10% who are fully independent, you will not regret it as it can be sold to /used by another family. If better alternatives emerge 20 years down the line, you can swap. As of today it is at a nascent stage but it looks like demand is going to outstrip supply when the kids turn adults).
5. There is an imperative need for planning for cash flow for the kid, the siblings (if any), old age, and health insurance.
The sooner one has a heart-to-heart talk with the spouse about these matters, the better it will be for planning and then executing it. These decisions like the most important decisions in a marriage have to be taken jointly.
But a precursor to this is some kind of understanding of autism. From my one years’ experience in FB, it seems that some fathers are not fully seized with the enormity of the challenges. (I do not blame them, I had the luxury of very supportive employers in the form of SBI who accommodated me, and thus I was able to maintain the work-life balance).
-Ask your husband to read a few books about autism. Avoid social media as it depicts only the glamour side of autism (or at times the other extreme depressing side).
-Autism speaks 100 days and the follow-up tool kits can be the ideal starters. After that, all the standard books like say, Ura Firth, Dummies, Bill Nason, etc are must-read (theory books, hands-on can be done at a later stage by fathers).
-Try to attend a workshop (preferably AFA) together. It will widen the perspective of both of you. I have seen that these workshops are attended 80-90% by mothers only.
-Try to meet as many families with autism as possible. It would be ideal to meet both on a 1:1 basis and also participate in occasional events held by orgs like AFA/FFA.
–Both the parents should participate in the parents-teachers meetings at school (at least occasionally) to get a first-hand report. Similarly, both parents should visit the therapy centers together as far as possible.
The whole idea is to get both parents involved in the whole process. Luckily more and more fathers are getting involved big time and I was privileged to be added to a WhatsApp group of fathers.
The second part is the financial planning part
Here I would like to add that in most jobs, including Government, pension is no longer a budget-supported affair. You need to contribute to it through an annuity scheme. Traditionally in India, both the pension annuity schemes and the Bank deposits were around 9-12% which has now shrunk to 6-7% Interest rates are linked to inflation (or at least supposed to be). Your savings and investment have to beat inflation. The earlier era of 9-12% was just about enough to beat inflation.
Now with the SBI fixed deposits rates being pruned further the present max return is 6.5% This in my view is not enough to beat inflation in the long term. Thus one will have to think about mutual funds in lieu of the traditional bank deposits and SIPs in lieu of the traditional RDs (only a core portion needs to remain with the Bank). If one is willing to take a bit more risk, direct investment in share markets, with a long-term perspective on quality blue-chip shares can also be contemplated.
Financial planning would in any case be needed by the middle-class folks, given the falling annuity rates. With a kid with special needs, this needs to be fine-tuned and tweaked even further. And the earlier you start, the better. I wanted to finish this post before the weekend to enable a no holds barred discussion by the parents.
And I am sorry if I have ruffled any feathers as some persons have alluded to spreading negativity whenever I give a reality check. I think that we have been in an ostrich-like approach for too long, I am glad that younger members too have started thinking about these critical issues (rather than just academics or therapy). I believe in straight talk and giving it straight. Though it hurts at times, I find it better than just being politically correct. And taking the suggestions or disregarding them is the prerogative of the member(s).
