So often mom’s of newly diagnosed children ask me that question when they find out my terrifying truth. “How do you do it?” It’s not something I discuss all that often. I love discussing the kids, but, how I “live” day to day is something I’m not all that keen on sharing. But I thought it time. I’ve been writing about being a special needs mama for a long time. You can go back to this post from 2013 called Coming apart at the seams and see our journey from having our first child diagnosed, having our second child diagnosed, and all the in-betweens.
The road is long and the journey treacherous.
It’s an amazing road to travel having two kids with Autism. It is a very hard road though. I love them more than anyone in this world could ever love another. I’ve had many people tell me that they are lucky they have me, that I’m the right person for them, that I have so much patience…..But the truth is, they are the right people for me and I’m lucky to have them.
The only difference, I think, between a typical mother-child relationship and a special needs one is the things that are celebrated and the trials that are had. Just like you, I celebrated Sir.E’s first words, it just happened to be at the age of 3 and 1/2. It may have taken us longer to get there though, we may never have gotten there, and so when we did, it was celebrated then and there. Then and there because it might not ever happen again. It might have been the only time I heard my child speak. We celebrate learning the rules to a game, while others moms celebrate watching their child’s first game. We have trials on whether or not he is still able to function at the end of the day, other moms have trials on getting them to finish their homework, or practice their musical instrument.
And then there were two special needs
So how do I do it? The same way you do. I try my hardest to have patience. I do my best to continue explaining things lovingly. When they act out, I don’t wonder “is this because of the autism, or because she’s four, or is because she has sensory processing disorder, or maybe because she’s tired or getting sick???” I just say, “that’s a behaviour we are not going to enforce, let’s discourage it”. And sometimes I go to my bathroom and cry, just like you. It’s always a good idea to parent positively, and from a place of love. But oh man, that can be insanely hard.
Sometimes, I’m just a pendulum mom. Swinging like a huge clock back and forth, totally out of control from good mom to insanely pent up strict mom. Then someone has a meltdown and I’m like “oh yeah, I have special needs kids, I can’t be a bloody pendulum”. They need consistency if nothing else. You grow as your kids grow I think, so if your kids grow slow, you slow down for them. You expect less of them when they grow slow. The ones who grow faster you know you can expect more with.
My terrifying truth
I suppose it’s every Autistic mom’s worst nightmare. Sir.E has stalled. It’s been over a year since he progressed. Since September we have even seen major regression. See, the main difference between a special needs mom and typical mom, is that we live each day like it’s our last and like it’s our first. Because it is our first, and could quite possibly be our last. “It’s the first day he got dressed by himself, celebrate with him but try not to get too excited because he could stall, or regress, and I need to be ok with that,” we tell ourselves. You’re always trying to celebrate every little thing because you know they worked so much harder than their peers to get there. But you’re terrified at the same time, that maybe this will be the day they will just stop.
Maybe that day will never come.
Or maybe it will.
Does it matter? Certainly. As mother’s we yearn to see our children progress forward in the world. Form meaningful relationships. Learn and enjoy and try new things! But when a child stalls, they just simply don’t progress. They don’t learn, they don’t move forward, but, unfortunately, they still have to keep going. It’s like running as fast as you can on the treadmill when you need to get to the grocery store. You try to change things, programs get changed, skills get reassessed, you meet with the team again and again. Then you just wait. You wait day after day, sometimes year after year, now, not wondering if they will stall or regress, but wondering if they will ever progress again. Will he learn independence again? Has he maybe just been overwhelmed….for the last 18 months? Should I build a sweet in our basement.. :).
Does it still matter? No, probably not. They are my children, progression or not, growth or not, independence or not….I need them like the moon needs the sun to make its light. They make my light. That’s how I do it. They MAKE my light, they are my passion. They made me a woman who was able to care for two special needs children and a typical one, they taught me who I needed to be. Through who they are, if you could meet them, oh you would see. You would see that I’m just a reflection of their light. That my passions are actually their personalities.
You would see, that I love them more than anyone in this world could ever love another. It’s the kind of love most people only get to watch, that I get to live. The kind every little girl dreams of having one day, the kind you think only exists in Hollywood. The kind of love that makes a mom lift a car. That’s the kind of love I get to experience every day. It’s exhausting and overwhelming and frustrating and crazy emotional. But it’s that kind of joy that special needs moms talk about. That kind that doesn’t compare to anything in this world. That’s how I do it.