So I have been toying around with the idea of opening up a little more. Being just a bit more honest about everything. Let you all in on what it’s like to raise a child with autism or other spectrum disorder. It’s not like you see on TV most of the time. In our case it’s extremely dark and challenging. I think I will do this in parts because honestly this will be very difficult and emotionally draining for me.
Here is my disclaimer: Gavin is no simply autistic. He suffers from aspergers syndrome. Typically this means high functioning autism. In Gavin’s case this is not always true. Gavin is very unique in that he floats on the spectrum. This means that he can be high functioning (brushes his own teeth, dresses himself) and he can slide all the way down to low functioning (can’t dress himself, can’t brush his own teeth ect). This is not very common at all. Gavin also has many other diagnoses. He suffers from bipolar disorder, OCD, PICA, Sensory integration disorder, PTSD, ADHD and Conduct Disorder. These obviously contribute to the over all complexity of the situation. So this situation isn’t typical. End Disclaimer :)
Raising a child with autism or other disorder is very rough on the entire family. It is emotionally and financially draining. Every day is a constant struggle to move forward but most often it is a struggle to simply keep from regressing any further. This takes an emotional and physical toll on everyone in the house. On the financial side of things it is almost impossible. People don’t realize that most insurance (at least in our experience and what others have shared with us) doesn’t cover autism. In Gavin’s case he is on disability. This means his medical expenses are mostly paid for by Medicaid. People like to judge those on Medicaid as lazy or irresponsible. Sometimes this may be the case but families with autistic children have no other choice. The truth is that Gavin can go through medication like water. This is because for some unknown reason Gavin metabolizes medication very quickly. So it we may go through 6 different meds or doses in a month trying to find one that works. In the past Gavin has been on $1000.00 +/month in medications alone. This doesn’t include the numerous doctors and special therapists. The typical specialist runs around $300/hr. Sometimes he is seen once per month or once per week. Sometimes he has 6 appointments in a week. For 2 years Gavin had 5 appointments per week and I am not kidding. The cost is staggering.
I have heard people make the comment (referring to Gavin’s Medicaid or SSI checks) that it must be nice to get a free ride. The reality is actually quite the opposite. There is no such thing as a free ride. Gavin being on SSI (which includes his Medicaid) is not fun. We have to sacrifice a great deal in order to keep him covered. We cannot have a savings account, retirement or even whole life insurance. We cannot have assets over a certain amount (under $5000) at any given time including our business. This means that when “things” come up we have no money. We are self employed in order to more tightly manage our income. Running a business without capital is extremely difficult but we have stayed alive for 10 years.
The problem with this situation is that it is not possible to get out of. In order to pull Gavin off of SSI I would need to increase our gross income to $5,000 or more per month. That’s not going to happen right now. This is extremely demoralizing. I have very little hope for the future at this point. There is not financial security for us and that keeps me up at night. Trying to figure out bills is the very last thing on my mind when Gavin is psychotic and hearing voices. All you want it is to hold the crumbling pieces of your family together. It’s a balancing act that you are distained to fail. To say the system is flawed would be an understatement.
To Be Continued…………
Lost and Tired
Thank you Rob for posting this! Anybody who judges has judged your situation with comments such as "nice to have a free ride" should be forced to spend a few minutes in your shoes. I say a few minutes because honestely I feelsuch closed-minded people wouldn't even be able to last THAT long in your shoes or mine. A retired friend was once complaining about money and how they never get to go anywhere and that it must be nice that we get to can afford to "get away". By the way, that is not always true! And we never ever get take family trips. Its impossible with Matt. My husband told our friend "I would trade every single dime I had if it made Matthew better".
ReplyDeleteYou have inspired me to blog about Matt's comorbid diagnosis. I've noticed there's a lot more tv programs and books that feature a person with autism....which I want to say, is great because it brings awareness to the disorder. People are fascinated with Matt and are very accepting of his "autism" behaviors. They aren't accepting and understanding when he rages. They just want to see the quirky and mysterious way that he behaves. They don't want to see the parts when he puts holes in the wall. You are right. Its not like what you see on tv.