Feelings of isolation quickly flooded into my life at the beginning of 2019 after we received our second Autism diagnosis, a Rett Syndrome diagnosis and I was told that I was headed down the path of MS. I had already discovered that my new identity in life removed and isolated me from the staus quo… but with each passing day it seemed I vanished a little bit more.
See, unfortunately I discovered early on that being an active, engaged and invested Dad is less common than you may think. Dads get ignored and overlooked and often excluded by A LOT of companies, organizations and individuals in general. I wasn’t welcomed to the “Mommy & Me” groups… because, well, I’m not a Mommy. So, where are the “Daddy & Me” groups? And I’ve written blogs about how marketing is solely targeting Moms. A perfect example is the CURRENT Real Canadian Superstore campaign where their theme is “Shop Like a Mother”. I take great offense to that, especially seeing as I have always done the grocery shopping for my family. But I guess according to Superstore, Dads don't shop. So, you can see how being a Dad is tough.
Then I had twins. And that’s a thing. I try not to make a big deal of it, but it kind of is. Parents of singleton children will never understand how having twins changes EVERYTHING. The odds of me finding another Twin Dad reduced drastically. Coincidentally, the only friend I’ve found so far is Stacey, one of the other Dads that goes on the #5DadsGoWild trip with me each September.
But I’m not JUST a Dad to twins (and at the time, three under the age of two!), I’m a stay-at-home Dad. This excludes me even more. People honestly don’t know what to say to me or how to handle it. I’ve been a part of some pretty awkward and sadly hilarious conversations with people (even moms) trying to figure out what I do all day.
At pre-school last year with Liam, I was the only Dad who dropped off and picked up my child. The other nine parents were Moms. I got into this conversation with one of the moms one day as she was trying to figure me out and I had to finally say, “I do the exact same things you do - groceries, laundry, cooking, cleaning… except I’m a guy!” I don’t understand why for some people it’s so hard to comprehend that a man can be the primary caregiver.
Which leads me to the next layer. See in typical families, you don’t hear “primary caregiver” all that much. It’s simply “parent”. But in the special needs community, you add another title and job description to your resume. If you thoughts stay-at-home Dads were rare… finding a primary caregiver is even tougher. I have literally had organizations refuse to list me as primary caregiver because I’m not a single Dad, meaning there is still a mom in the picture, so obviously SHE would be primary caregiver.
And then there is Rett. Oddly enough, I’ve connected with more Rett Dads than any other type. Why? Because we know how rare we are, and we understand how isolating it can be. See, the majority of my friends vanished. Someone pointed out to me that if this was indeed true than they were shit friends to begin with… and perhaps this is true. But it’s next to impossible to find anyone who can relate with me anymore.
Do you know two stay-at-home Dads who have twins with special needs and a debilitating rare disease? I don’t.
So, why do I share all of this? Because if it weren’t for YOU GUYS on social media, I don’t think I would have survived. If Madison is as rare as everyone tells us she is, then how rare does that make me?!? I needed to search the entire world for my village. And I found them.
I remember I found Grace for Rett first. I read her blogs for days! Soaking up as much information and knowledge as possible. I reached out to Betty, her mom and asked a few questions while following her own personal account too. She helped by being real with me. Telling it like it is. She also helped by linking me to other Rett families and accounts like Pink Puzzle Pieces where they are TWINS with Rett Syndrome. Now I just need to connect and go golfing with their Dad Trey - because we would understand each other on TWO levels.
Or I Am Evelyn's Voice was another incredible, inspiring and knowledgeable account that I connected and fell in love with. I learnt a lot from their posts and blog and quickly followed the parents accounts too; including Evelyn’s Dad, Stephen Fowler who is active on social media which is rare, yet super cool.
I connected with Lucky Line Wife because their daughter Korrie and my Madison are only a few months apart, and are on a very similar path and journey. In fact, we quickly discovered that they often were working on the exact same exercises at the exact same moment in their respective OT and PT sessions, 1,000 miles apart. That and Brooke is super cool and in the same time zone as me, so we often exchanged a late night message where it was actually read immediately.
And then someone finally linked me to a whole slew of Canadian accounts. Little Brave, Gemma Fox, Josh McCulloch, Revs for Rett and more! Each of these Canadian accounts helped in a unique way because our health system is so vastly different and there is just a special connection between Canadians.
So I want to say thank you. Thank you for being my village. Thanks for being the best support group I never wanted to join. Sure, I haven’t met a single one of you in real life - and being friends on social media doesn’t always take the feelings of isolation away, but we are a community. We get it. We understand each other. Often just sharing a single purple heart from another Rett/Special Needs family says more than a paragraph of rambling from someone who doesn’t understand; because We fight for Rett. We are Rett.