“Friends are the family you choose.” I am blessed with great friendships, so I guess I’ve made good choices. When life is handing you those proverbial lemons, it is often those very same friends who are there with strength, support and a listening ear.  And so it began…
While hanging out with good friends, we got to talking about our daughter Ashley. Ashley is 13 and she has autism. We had recently fought for an out of district placement for Ashley to be placed in a special school for kids with autism.  So our friends were asking us about her and how she was doing. We knew our decision to have her placed out of district was best for Ashley and as she continues to make progress, we see the difference in her.
Let’s be clear, even without fighting for a private placement, having a child with autism imposes a huge financial burden on families.  From the day our children are born, parents do all kinds of things to help them succeed in life.  What we need to do for Ashley is vastly different than what most parents do for their neuorotypical kids. We know that first hand, we also have a neurotypical 17 year old son, Ashley’s brother Matthew.  Our choice to do the multitude of things we do for her (and have done, since Ashley’s diagnosis at age 2) are to hopefully help her progress and become a functionally independent adult. We got into this discussion with our friends.
The summer camps we needed to pay for were not so she could practice her sports skills or spend extra time at the ballet bar, they were necessary for her to continue her academic and life skills in the “off time” of summer. Without the camps, we could see significant regression from the prior year’s growth. That is just one of the numerous expenses incurred in the past 10 years.
It’s not the same as paying for hockey, like we did for her brother, or any other voluntary activity. The various therapies, social skills groups, speech therapy sessions, etc. are certainly not something Ashley does for fun. Our hope is that by doing all of these things maybe she can someday live on her own, have a job and take care of herself. It’s not for her to become a dancer or a college athlete, just to be comfortable in her own skin. I bring this up in my first blog to acknowledge the vast difference between a “need” and a “want” when it comes to the costs of raising children.
So, as we are having this conversation with our friends, I google what the cost is for raising a child with autism. This is what pops up: “In the United States the cost of autism over an individual’s lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without an intellectual disability. Autism costs a family $60,000 a year on average.” When you take into consideration the necessary redirection of my own career that resulted in a significant pay cut after Ashley’s diagnosis, and add in the summer camps, behavioral interventions/home therapies, co-payments, etc. – Yes, that number is indeed very accurate.
Our friends, Kerri and Duke are married, but don’t have any children. They listened intently, as good friends do, and remarked on what great parents we are and then the conversation naturally moved on to other things. I mean let’s be honest, it’s more fun to talk vacations and how the Red Sox are doing. Autism? Not so fun.
Imagine our surprise when Duke came back to us a week later with an idea for a fundraiser.  A 100 mile walk ~ We thought he was crazy!  He’s not, he’s just a good guy, a GREAT friend looking to help us out. Wow…
Long story short, Joe and I didn’t feel comfortable having a fundraiser that would only benefit our family. The idea of doing something that could also help other autism families was something we felt we could support. So, here we are, with some wonderfully committed friends, ready to raise money to help other families like ours. All money raised will help families pay for things I mentioned above but could also go toward a myriad of others. An autism summer camp, a neuro-psychological evaluation, co-pays for therapy services, etc.  Money raised will come in the form of a direct payment to the camp, the doctor, therapist, school etc. We are really excited about how this could help families and NOW HERE WE ARE, Blog Page and all! Let’s do this!
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One thought on “#GoodFriends”

  1. Had the HONOR of meeting “Duke” today!!! What an upstanding man! He is truly a man that deserves a multitude of respect. Close to my heart as I am Ashley’s Aunt and can’t thank him with words alone. My niece and her family know exactly what it’s like to OVERCOME. I actually believe that this cause, knowing first hand what they have had to work through (expenses, etc), can in turn help those other parents and families in making life a little easier. Too many family’s with Autistic children can’t afford the expenses it takes for their children to get the services & care & recreation that can help their child’s life become wonderful and assist in what they may become in the future. A BIG thank you to Duke, Kerri & of course, Shiela, Joe, Matthew & Ashley. Need to send out a little shout out to the “Angels” as well. 🙂

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