After I finished last Sunday’s update, I promised family and friends I would keep today’s post shorter to compensate for that extra bit of reading. I know each of you have busy lives, and the words in my head can multiply on a screen quicker than dust bunnies for a pet owner. But I promise you I will ruthlessly constrain my love of elaboration this week to honor that commitment 😉

Perhaps some of you have been wondering at my statement that many families (including ours) can not afford the out of pocket costs for Autism therapies. I am going to quote from the website of the company we receive ABA services from:

“Treating a child with autism can cost approximately $70,000 a year for comprehensive treatment. This is without a doubt, not accessible for families of middle and low income level.”

Many private or employer based insurance plans in our state do not cover therapies like Applied Behavioral Analysis (ABA) that are used to teach skills to Autistic individuals. I remember the day I called the insurance company we had through my husband’s employer after Tony was diagnosed with Autism and was told that they would cover only 2 hours a week with a psychiatrist and medications related this diagnosis. 40 hours per week of instructive therapy (not counseling) tailored to address an individual’s functional deficits is what is recommended to help someone like Tony with more severe manifestations of Autism.

That is why we, like many families in our state, ended up needing to apply for funding to cover those therapies from the Division of Developmental Disabilities. And yet, even with that kind of assistance, having a kiddo with more significant disabilities has a pretty hefty price tag.

Those of you who are in-home members of our therapy team have seen exactly how much money I spend on therapy supports (which is not a covered benefit, nor do we receive SSI disability income for Tony). I have a child with massive deficits in play and functional skills, and I am obligated to provide all of the items we utilize for therapy targets. I also have needed to spend heavily on items for sensory integration therapy. At some point in the upcoming months, I will be sharing a bit more about exactly what the early days of Tony’s sensory processing disorder symptoms were like. That is a very emotional period of time for me to write about, and I am still kicking that can down the road a bit, to be perfectly honest.

We also spend money in ways many families probably don’t ever have to think about. I was talking over a month ago with my good friend Gena about some of Tony’s deficits, and she started brainstorming with me about ways to get more alternating bilateral leg movements into his days. Tony is not ready for a bicycle yet, and he has outgrown the tricycle he had when he was younger. Gena recommended we look on-line to see if someone made tricycles geared towards older kiddos with developmental delays. Honestly, I can’t say enough about how grateful I am that I have people like Gena in my life who are not only willing to help me brainstorm, but who also feel comfortable telling me when I am missing something.

So, there are products out there for kiddos Tony’s size if you want one…but it will cost you. The available options on the market for larger kiddos that need a tricycle range from mid $300’s to over $1000 depending on the level of support the individual needs. After a series of on-line adventures with two different companies who listed a product I thought would be ideal for our little man- only to find out the item in question was no longer being manufactured – I ended up ordering a Dirt King for $364. It is a great thing the handlebars go up so high on the model I purchased, because after all this time (it took Tony many months of practice to learn how to pedal a tricycle in the first place) he still needs help with steering and going up hills and this makes it easier for me to provide that assistance.

Soon, we are going to have to replace Tony’s car seat because of his size. For safety reasons, he still needs a five point restraint system. If you need one of those, you better believe it will cost you…harnesses that can adapt a seat belt will cost a bit over $200. I am concerned that alone will be inadequate to keep him safe- the item that may best meet our security needs is $895.

Thanks to my beautiful friend G.R. we have not felt the full brunt of what it means to pay for clothing for a kiddo who has a genetic disorder that comes with excessive growth. She has a son who is older than Tony and began sharing with me the clothes he has outgrown for the past couple of years. You had better believe there will be an upcoming gratitude note with her name on it sometime in the months ahead. Before she started doing this, and especially when Tony was younger, I was replacing his clothing at a rate that would make most people’s checking accounts alternately smoke and sweat.

And, lest you forget…I am the proud mother of two amazing children. I try my best to do with my spending what I cannot do with my time: keep it equal.

I started reading the book “Neurotribes” by Steve Silberman this past week (checked it out from the library), and he mentions a truism that many families of Autistic kiddos end up needing to sue schools to get “appropriate placements.” I would add sometimes they may end up facing the need to sue other entities as well. If that is the road needing to be traveled, say it with me my friends… “it will cost you.”

I will tell you we are more blessed than some…but not so blessed that we could afford to pay for Tony’s Autism therapies ourselves. I will also tell you that I don’t buy a whole lot of stuff for me and I divert those funds to therapy supplies. But we can at least do that much. Many families cannot. When you have a child with significant disabilities that you are trying to move forward, there are many ways to tally up an overwhelming bill, because always the effort will cost you.