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#BestFriend (A Guest Blog)

When I first met my best friend Shiela at age 11, she was the cool kid on the playground and I was kind of the nerdy kid. Born 6 days apart, we hit it off right away. We would spend our teenage years overcoming challenges – Shiela was diagnosed with a thyroid disorder and then as a Type 1 Diabetic. I would continue to navigate the path of a pretty dysfunctional family with alcoholic parents. Tough stuff…we were always there for each other, always a bright spot in each other’s day.
This continued through college and our early adult lives – getting married six months apart and starting our families two years apart. I ultimately bought a house closer to her house and we live closer in miles now then when we were kids. We both had two children – a boy and a girl, the girls separated by 5 years, and our boys only separated by 18 months.
I refer to Ashley and Matt as my niece and nephew, and I don’t take that lightly – afterall, friends are the family you choose. Having them grow up close to my children is a dream come true.
My memories of Ashley early on were of this wonderful independent child that never needed anyone to play with, but she was very content playing on her own. She never fussed at bedtime. I marveled at this – what a wonderful child! And she was…. and she is. I didn’t realize at the time that the independent play and the lack of eye contact when you spoke to her could be a sign of autism spectrum disorder, I just thought she was a shy and independent toddler.
When Shiela told me that Ashley was diagnosed was Autism, I have to be honest, I didn’t know too much about it. I remember initially thinking she would be “cured”. I do know that I spent a lot of time trying to educate myself about it, but I’m not sure anything educates you as much as living with it day to day.
What I would witness in the next decade was watching my best friend become an incredibly brave and strong woman, a champion for her daughter and her family. She would attend special needs seminars, educating herself on special needs laws, spend countless hours fighting for every single item Ashley was entitled to on her IEP, and juggling Ashley’s additional services and appointments each week. She did all this while maintaining a part time job, being a Hockey Mom to Matt, and helping her aging parents.
There were many times I cried and many times I was convinced that my words were somehow not right. There was no part of me that ever wanted her to feel I pitied the situation. I didn’t want to avoid it or make it seem insignificant, but I didn’t want it to seem like it was the only thing going on in her world. I marveled at her strength and I worried constantly about her own health and her diabetes, something she sometimes put to the side as she cared for everyone else.
What could I do to help – what can you do as a friend in this situation?
You can listen. And by listen, I mean listen and understand enough that you could repeat it back. And If you don’t exactly understand – try to read about it. It’s exhausting to have to explain the same thing 10 times and by educating yourself you might be that one person that she doesn’t have to do that with.
You can anticipate. IEP meetings = not a good time. Know when the meeting is, ask how it goes. Possibly provide a bottle of wine that night after the meeting. Parents come out of those meetings more often than not feeling like they just went into the ring with Mike Tyson and the anxiety leading up to it is overwhelming.
Think before you speak. Sorry to break it to you, but Johnny’s overtime loss in soccer isn’t nearly on the same level as navigating Autism and I know sometimes she wished the overtime loss was the biggest upset of her day. There are times I need to remind myself of this, I am not perfect in this department. They still want to hear about Johnny’s game, but maybe you can keep the complaining of the trivial stuff to a minimum.
Be flexible. Don’t suggest you all go out together to a place that would be uncomfortable for a parent and child with autism, even if it is great for your family. For me, spending time with Ashley in a place that is comfortable for her makes me happy.
Be compassionate. Remember as a parent of a typical child how exhausting the day to day struggles of being a parent is? Try to imagine the exhaustion and struggles of having a child with special needs – the everyday struggles, the financial struggles, the changing your whole world struggles and the sadness you might feel just because things will never be the way you had imagined.
I’d be lying to say I wish things weren’t different for my best friend. I wish things could be different, be easier, without changing Ashley – if that makes sense. It makes sense to me. It’s heartbreaking to watch your best friend navigate the hardest things in life but at the same time it’s amazing to be a part of and very inspiring. Shiela inspires me to want to be a better person. Ashley’s journey has made me realize that if this world just had more compassion and less judgement it would be such a better place.
Thirty six years later and I still think she is the cool kid on the playground and admire her more than words can say.

#DifferentNotLess

As you can imagine, being told that your child has autism is not an easy pill to swallow.  Ashley was 2 years, 9 months when she was diagnosed and we were committed to doing whatever it took to make her as “typical” as possible.  At the time, I thought THAT was the goal. I wanted Ashley to be just like all the other kids.  I wanted her to fit into “the box.” Nobody wants their child to be different. Being like everyone else was the definition of success.  It’s honestly what I wanted more than anything in the world.  And I explained that to a therapist when Ashley was about 8 years old.  She listened to my words, took a long pause and then said to me, “What if she can’t?  What if being the best that she can be isn’t the same as other kids?  Will you love her less?

That was a life changing moment for me.  I cried my eyes out when she said that because in that very moment I felt like THE WORST mother on the planet. But that day was also the day that I shifted in my role as Ashley’s mother.  I came to truly accept her for who she is, autism and all. I stopped comparing her to other kids and looked for her to make progress at her own pace. She is a beautiful, amazing girl, a teenager now.  In some ways she is very much her age of 13 & 1/2 and in other ways she’s really not.  I have hopes and dreams for my only daughter…the same way any mother does.  And as she grows I see maturity, development and understanding that I wasn’t sure we would ever see.  I am filled with hope while also trying to balance reality.  Some days that balancing act is really hard.

You might think, why is she sharing this? My answer is, why not? Sharing our experiences is what connects us all.  I didn’t ask to take this journey, but I find comfort in sharing the ride with others.  If you were sitting on a park bench with me, I would share the same story.  I hope that sharing stimulates consideration and understanding. When our kids are born we think our job is to educate them about the world, what I’ve learned is that my job is to educate the world about Ashley and others like her.
If you know someone who has a child, with autism (statistically if you don’t, you will) I hope you can share my story.  If I could go back and talk to myself on the day that I felt like the worst mother on the planet, I would tell myself that things will be okay.  She is different, not less and my love for her is extraordinary.

#GoodFriends

“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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