I couldn't sleep last night. I spent a better part of my morning investigating (again) what government services we may be (or most likely, in my experiences, are not) eligible for with regards to my son's autism and cerebral palsy diagnosis. I go in spurts with this kind of thing. It's either "balls to the wall"(where did that expression originate??) investigation on a topic, whether it be therapies, services, IEP verbiage, or whatever the flavor of the month is. And eventually, I become so drained, drowned, and jaded that once I accomplish what I set out to do (or fail miserably), this quest for knowledge and help goes on the back burner for as long as I can get away with it. It's a new pattern that has developed since we've joined the "Special Needs Club," and I'm pretty certain I'm not the only one who operates this way, because it can be exhausting, frustrating, and down right maddening.
Let me explain how a typical cycle goes. About a year ago, I was told by many well-meaning health care professionals, and random people about the plethora of much needed "resources" that are allegedly available to my family because of the special needs status of my son. (and the quote, unquote is very intentional in this case.) Some of these include, but are not limited to, financial supplements, free therapy, respite care (this is a BIG one), medical coverage, and even programs for his siblings. Sounds hopeful, right? Thus, I began the process of calling the major Community Living Services organizations to investigate which, if any, of these would apply to my family's situation. And let me insert here that I am NOT one of these people who feel ENTITLED to help simply because I have a son with special challenges. Quite the opposite, in fact. I seriously wish that I did not have a REASON to seek out these services in the first place. However, with the advent of our diagnosis, along with the birth of my other two children, our financial situation has essentially gone from living a comfortable lifestyle, to one in which I have to wait to do the grocery shopping until pay day (and even then knowing I am shorting SOME medical provider, or skipping a utility payment in order to do so), and choose which bills I will and will not pay this month based on what we can manage in that given month. I say this not to elicit any type of sympathy, but to paint a real picture of what happens to MANY hard working families who, like us, and much like participating in one of those polar bear plunge events, are SHOCKED with the expense and rate at which you must spend money in the early years of your child's life with the hopes and intentions of maximizing his potential and at the constant direction of every medical professional you meet.
But I digress..... With each phone call that was made today in the efforts to reap the benefits of said organizations, I became increasingly more disappointed and hopeless. I was either shut down and referred immediately to another organization, flat out told that the program didn't apply to my family for one reason or another (and 99% of the time it was because it was income based, and does not consider any debts or other expenses related to our diagnosis) or that the program that I was seeking information about (that perhaps another parent had informed me of because they were able to secure this service at some point,) was no longer in existence because the funds had been depleted or completely cut off. Awesome. The result was that I have learned an immense amount about what is out there, but what is clearly nowhere within our reach.
Anyway, I started this post about 2 weeks ago, and in that time after sitting through 5 hours of interviews, taking Nicholas out of school for two full days (so that the interviewees could verify that in fact, he does not talk, and needs a substantial amount of assistance with his daily living tasks) as well as making multiple and hours worth of phone calls to various organizations to complete all kinds of applications, I am here again at square 1. DENIED. DENIED. DENIED.
While I am not seeking a pity party here (PLEASE, no pity...we are not the only ones in this boat, and also there are many other circumstances that elicit this type of pursuance of help), I feel that this is an important part of our life to share with those who truly want some insight into what it is like to parent a special needs child....ANY special needs child. On top of the general care and dealing with the constant daily needs and nature of the diagnosis of the child, it is it's own full time job simply to advocate for them, whether it be at school, financially, or otherwise. And trust me, with three young children, it's not a job I prefer to spend my time on when there are little people who need and DESERVE my attention.
That said, here is the plus side. This inspires me, and pushes me beyond my comfort zone. In a sick and twisted way, I am thankful for the experience because it has lit a fire under my arse, and has pushed me to challenge myself. It is forcing me to be resourceful, more efficient, more cost effective, and even "scrappy" if you will. As a direct result of these wasted countless hours of my time seeking help, it has forced me to realize that I will have to figure out my own way to make this work for my family. In fact, I'm writing my first real grown up business plan to create a company that, with any luck and success, will help to support my family financially, while also benefiting other special needs families. This course of action would have never even occurred to me 3 years ago, before we were faced with these challenges.
There is an incredible need for middle income families with special needs children to receive financial help and support, and the government simply cannot provide for these families. And I suppose in my heart of hearts, I get this, despite my wasted time and frustration. But that doesn't mean we can't support each other, and that has become my new mission.
Thus, I thank you Autism, for inspiring me, and giving me not only purpose, but courage. This too shall pass, and better things are to come. It's all about perspective, and I choose this to, instead of break me, become my new opportunity.
