#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.

3 thoughts on “#BestFriend (A Guest Blog)”

  1. You are a wonderful writer…I’ve only known Shiela for maybe 10 years ..I’ve been in awe for many of the same reasons you’ve described. You gave a complete picture of your amazing friendship and your obvious love for Shiela and Ashley… tears are flowing as I’m writing this. I’m so glad you had each other all these years 🙂

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