I thought I would test this new idea on myself first to see how this goes. I have received several emails already so the response form the community is there. I just need to format it… So keep in mind I’m asking these questions to my self, so it’ll be a little weird for all of us….. 🙂 It will go something like this:
Today I have the pleasure to introduce you to Rob Gorski and his family (I know this is weird but it won’t be when I am introducing someone else).
(Lost and Tired): How has Autism touched your life?
(Rob): Autism has touch our lives in a very unique way. My wife and I have 3 boys. Gavin just turned 11, Elliott is 4 and Emmett is 2. All 3 of our children have been diagnosed Autistic. All 3 are in vastly different places on the spectrum as well. This makes things uniquely challenging for us.
(Lost and Tired): How long has Autism touched your life?
(Rob): Well, Gavin was diagnosed in 2005. We struggled long before that because no one knew what was wrong. I would say we have been touched by Autism for 6 or 7 years.
(lost and Tired): What type of impact does Autism have on your family’s life?
(Rob): How had Autism impacted my family? It’s like an asteroid. When it hit our family EVERYTHING was impacted. EVERYTHING changed. We no longer can do the things most families do, like go out to dinner or take the kids to see a movie. We live through daily meltdowns, some of which are very scary. We have NEVER been on vacation and rarely go to family functions because the some of our kids don’t do well. We miss out on all the things we thought we would either be doing (or have already done) by now. Every second of every minute of every hour of every day is spent worrying about our kids. I know many of you out there know exactly what I mean…. That said, my kids have taught me so much. My wife and I both appreciate the “little things”. We have learned to never take things for granted. Every “new word” learned or every “good day” at school is cause for celebration. Hugs and kisses mean everything… I think Autism have given us a very unique perspective that most parents don’t have.
(Lost and Tired): What types of sacrifices have you had to make?
(Rob): Sacrifices? We have made many. I gave up a career as a Firefighter/Paramedic. That was such a HUGE part of my life for a very long time. My wife gave up school. Our kids require us both to be home all the time. So working outside the house isn’t possible.Be have both lost most of our friends. We don’t have many “nice” things. We have basically given up everything in order to meet the needs of our children. We drive over 100 miles a day to take all the kids to and from school. We have many appointments each and every week, We drive to Cleveland, Akron and Wooster on a regular basis for various testing, treatments, or studies in order to give our kids the best shot at life we can. My wife and I get to go out on a “date” maybe 1 or 2 times a year if we are lucky. We don’t sleep and are in the process of massively changing our family diet in order to accommodated Emmett’s special dietary needs. We live in a house that isn’t setup for our special needs family. It’s to small, falling apart and in a neighborhood that doesn’t allow for the kids to play out side very often. We don’t have TV (cable or sat) because we need the money to go else where for the kids. Most of the “nice things” we did have were sold to cover medical expenses or other things related to the kids. Honestly, this is just a few of the many sacrifices we have made or will have to make in the future. Many of you out there have had to do mush of the same I’m sure.
(Lost and Tired): What kind of “toll” if any has Autism had on your family (financial, emotional, physical, sect)?
(Rob): Autism has taken a HUGE toll on my family over the years. My wife is now chronically ill. Her health began to fail a few years ago. Largely as a result of the EXTREME levels of chronic stress we are under. She developed fibromyalgia which is a chronic pain disorder. She went from healthy to daily migraines,sleep disorders, blood clots, acid reflux and fibromyalgia. She lives in constant pain. The doctors say that she has to REDUCE her stress. That simply isn’t possible right now. We have been financially devastated. While I was a paramedic I had really good insurance but “Good” insurance DOES NOT TOUCH AUTISM. Things got to a point where I had to quit my career and become a stay at home dad. Things are way to difficult (especially with her health issues) for Lizze to possibly manage on her own. We basically lost 80% of our income as a result, well you can imagine the results.
I fix computers out of the house and we still have a small contracting company (that I can no longer work) that I started while I was still able to work. My brother works for us and we have a very small amount of residual income from that basically covers the cost of the business and helps with some bills. Honestly, we even went bankrupt a few years ago. We have gone great lengths for our kids and paid a very big price for it. We lost all financial security we had before but how can you put a price on your family.
We are physically and emotionally exhausted. We haven’t slept through the night in years. We are constantly trying to stay one step ahead of the kids. We have no time to ourselves and rarely get a break. Most of our “friends” I always find it interesting that people say they are “blessed” with an Autistic child. I would not choose to use the word “blessed” to describe our experience. Two of my three children are significantly burdened by Autism. I would never consider that a blessing. My children are blessings not the Autism. This may make me unpopular but if I could remove the burden from them I would. No child should have to struggle in this way. No child should have to be prisoner to a disorder like this. Many children do well in life with Autism but MANY MORE (like mine) don’t.
(Lost and Tired): If you could make people understand 1 thing about Autism, what would that be and why?
(Rob): I don’t know that I can narrow it down to just one thing. I would want people to know that Autism is not like it is on TV. Autism ABSOLUTELY affects the ENTIRE family. Many families “suffer” in silence and alone. Autism often isolates a family from everyone around them. This is something WE CAN NOT let happen. No one should go through this alone. We need to rise up as a community and share our stories so we can raise awareness and understanding.
This is kind of how I want to do this. I hope you learned some more about my family. Please check back to meet the other families….
If you have any ideas or suggestions please feel free to share them here. Also please remember to check out the “Autism touches my heart” facebook group.