Just because they need more help, doesn't mean we love them more!
Our promise to our two typical kids about their Autistic brother and sister.
These are my big kids. My son Mason is 9 and my daughter Elliott is 7.
I like to joke that there's no way these are my "normal" kids, because they drive me WAY crazier than my Autistic toddlers. (For the record, I'm only sort of kidding about that part. :-))
My son Cody is 5, and my daughter Lainey is 4. They were each diagnosed with Autism Spectrum Disorder (ASD) around their second birthdays.
Whether you have kids with special needs or not, I'm sure I don't have to tell you that Mommy and Daddy guilt is a VERY real thing. Moms are experts at driving ourselves crazy, am I right? Oh, the hours we spend staring at the insides of our eyelids (whenever we get a chance to do that kind of thing) thinking about all of the reasons we suck at being a Mom. Many a night have I spent battling between my exhaustion and my insecurities. Since Autism made its big debut in our lives back in 2015, I can sometimes literally feel the weight of the guilt I drag around. Our lives have changed so much in the past couple years, and the big kids have had to adjust and adapt in ways that make the ball and chain of guilt that much heavier.
"Mom, are they ok?" the big kids used to ask when Cody or Lainey would have meltdowns. Now, someone having a tantrum is just an accepted part of daily life. Let's just say my big kids know their way around a good freak out! I'm proud of their understanding and patience, but I feel lots of Mommy guilt about all the times I've had to tell them to wait for what they need while I calmed another kid. I wish I could go back to all of those moments to make sure I remembered to tell them that just because their brother or sister was yelling the loudest, doesn't mean the big kids' feelings and needs weren't just as important. I'd tell them that I'm sorry I had to push them aside to attend to the little kids first.
I'm not sure if it was worse in the beginning when my husband and I used to have to explain why we couldn't do something or go somewhere, or if it feels even worse now that the big kids stopped asking all together. "Why can't we play here," they used to ask? "Sorry, but there's no fence around that playground," I'd explain. Now they just know there's no way we can take two autistic kids who try to run away from us to an unenclosed playground right next to a busy street. They know it, and they don't even bother asking anymore. Mommy guilt!
The way we spend our time as a family has changed, but not just in where we go and what we do. Before kids on the spectrum are old enough to attend school, home therapy is key, so we've had a steady stream of therapists we've adopted as honorary members of our family...whether they like it or not. :-). These are just a few of the SERIOUSLY AMAZING therapy angels we've met on our autism journey, and we love each and every one of them.
When someone spends hours inside your home several days a week, they get to see the good, the bad, the ugly, the scary, the disciplining, the messes you don't feel like cleaning up, the toilet you forgot to clean, the dishes stacked up in your sink, and everything else in between. This included Mason and Elliott figuring out life stuck at home while their brother and sister got to play with the new cool people the big kids weren't allowed to interrupt. Let's just say it was a big adjustment.
On top of working with our autistic kids, therapists had to manage our big kids too. I'll never forget our first few months of home therapy, which just happened to start at the beginning of summer break that year. That meant all four kids were home all day during therapy sessions, and it was so hard for Mason and Elliott to understand why they couldn't always play with the therapists too. I tried to prepare activities for me to do with the big kids to occupy them during therapy, but I think to them it was just another example of attention the little kids got that the big kids didn't. Lots of Mommy guilt that summer!
Add a move from Georgia to Pennsylvania last year, a new school, new teachers, new friends, and a new home, and these two kids have been thru a lot. My husband Jay and I made it a point to pull them aside a couple nights ago before bed to tell them that just because the little kids sometimes get more of us doesn't mean we don't love Mason and Elliott just as much. They both seemed relieved to hear us say it. Jay and I listened as they vented about the things they miss being able to do and about how they wish we could do more. They talked about how fun it was to be able to go with me to Chuck E Cheese last weekend without the little kids so they didn't have to worry about leaving early because of a meltdown. I miss being able to do things with the whole family, but we promised to do more dividing and conquering to get the big kids out more often, even if that means one parent has to stay home with the little kids.
We listened and reassured them that it's ok to feel how they're feeling, and that we feel the same way sometimes. I was glad that they seemed to agree that our family wouldn't be the same without Cody and Lainey though, and that we wouldn't trade them for anything. I like to say that autism has changed us, but we wouldn't change a thing. Seeing how wonderful Mason and Elliott are with their autistic siblings warms my heart every time. For each struggle we've had are just as many moments of sweetness and understanding and patience I see in my big kids that makes me so proud.
Autism siblings are a rare breed of pretty freaking strong people who are both blessed and cursed. There are lessons that only special needs siblings learn that will help them later in life, but it does come at a cost. They will always have each other, but for now they're definitely stuck with each other. It's beautiful but hard, sometimes sweet but sometimes sour. Sugar coating it any more than that just doesn't fully honor their journey or speak truth to how much they give. I love them so much for hanging in there with us on this autism journey.