I read recently about a father willing to sell a kidney to pay for treatments for his child’s autism. There was also some similar discussions earlier in the month on other blogs that related similar stories regarding the costs of therapies.

Reading many of the comments re-affirms my gratitude for living in a province (in Canada) that provides some government funding to cover therapies for our son. When we initially received the diagnosis we thought that there was nothing we wouldn’t do, nothing we wouldn’t spend to make sure K got all that he needed. As time has passed, and we have become more experienced, we have come to realize that we have to be more reserved in our enthusiasm. We are still totally committed to ensuring that we are doing all that we can for K, but we have re-awoken to the need for practicality and balance. K is now 4, and making good progress, but it is beginning to become more apparent that we need to focus past the here and now to ensure we are planning for his future.

I think that early on many parents, and I include myself in this category, focus on the short term for many reasons. There is the natural, and likely universal, sense of urgency, something that I discuss partially in a previous post, as well as a feeling of needing to act on this new information as one does with alot of other medically based information- how do we start to make things better. I am hesitant to use the phrase “cure” here, as this has never been part of our philosophy for K, and can, within many parts of the autism community, spark a furiously fought debate. Again, I will comment only on my behalf and will let Tracy speak for herself, but my only goal since we received K’s official diagnosis is that we do all that we possibly can to help him reach his potential. This is a lofty goal, but it is one that all parents hold for their children whether they have a disability or not, and does not separate parents of special needs kids from other parents. What can separate them in a very many cases is that some parents need to do more to help ensure that goal can be seen to fruition, and that the child’s maximum potential can be achieved.

I am reluctant to think how we would be managing, and how K would be progressing, if we were not receiving government funding. It is when I think in these terms that I can truly relate to that father. Much of the financial struggle is due to the fact that not only can services be difficult to find as many therapists have a full case load, and there is a critical shortage of qualified people in the field, but rates for services can be very costly. I have never actually taken the time, or had the interest until recently, to keep track of how much we spend on K’s therapy, equipment, and supplements as we have always had the opinion that “it costs what it costs”. But I find as my mindset evolves and we settle into a routine that we feel is meeting K’s needs I begin to contemplate the future more and its financial requirements, not only for K but for his sister, and as importantly Tracy and I.

I hope this means I have achieved acceptance and transcended the sense of urgency that has now not only reduced my personal stress, but reduced my anxiety about the future and K’s future. K has always stirred in me, and it continues to this day and likely will never truly leave, a heightened feeling of needing my protection and help. This too is likely a strong motivator for parents being willing to spend anything and do anything, and I think it can be detrimental to the family as a whole if not kept in check.

To the dad who started this post I would pass on these words from my own experience.

As time passes from receiving the diagnosis, especially at a young age, reaction and immediacy evolves into the necessity for balance and sustainability. For many the thought of not being able to provide the one thing that may help their child achieve their full potential is heart-wrenching and almost beyond parental comprehension. Though this is never easy and can be unbearable for many, and is something I have wrestled with extensively, it is ultimately what must be done to ensure that you can provide that which you so desperately desire.

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