Oct 15 / 2019
Life with a Child with Disabilities
Category : Living Daily, Motherhood, My Family, Personal, Words on my heart
This Thanksgiving weekend was hard for my Micah and, thus, hard for me. We’re in the process of having him assessed for autism, and it’s a roller coaster. One meeting I have a paediatrician that specializes in this telling me that even if I hadn’t told him a thing, he would have flagged Micah for autism potential, and the next meeting I have a speech therapist that knew how to relate to my kid see almost no problems (though she did admit there were still some flags and she would need to assess him further before she could say either way). I have 3 more assessment meetings to go to and am paying thousands of dollars for them “in hope”. In hope that they see my boy who does well 75% of the time can’t cope with ordinary life the other 25%. This time last year, he couldn’t cope with life 90% of the time, so I admit we are much better, but the reason is because he’s older and he can “hide” the behaviours more. But they’re still there, and he still struggles. And it breaks my mama heart to watch him struggle. It breaks my heart even more to see my husband, who is my rock, grieve Micah’s harder journey as well.
I watched two of my kids run around and play with family yesterday. I watched one kid physically twist and turn in discomfort if even I looked at him. I watched him stand in daddy’s lap both pressing in and twitching away at the same time because he wanted the safety but was struggling physically touching someone.
I watched him eventually grab an aunt he deemed “safe” and pull her away to the other side of the house to not be near people, or noise, or conversation, or looks. And then, when she was done playing, he sat in the loft watching t.v., or playing alone with Levi and max one other person in the basement the rest of the time. When he did venture up for dinner, people thought he was having an amazing time (and for some of it he was), but he was also maxing out and getting manic.
We had to go home early because he kept wetting himself. He was at the grandparents two days prior for a sleepover and didn’t have a single accident. When he was in the basement hiding with toys, he was in control and told me when he needed to go. When he was surrounded by people, he couldn’t stay in control. So eventually we were down to our last pair of pants, which accidentally were Levi’s, not his. This was the last straw. He rocked on the bathroom floor, hiding his head in his hands, and on the verge of tears begged to go home to get his own pants. He hid behind daddy because he couldn’t handle people looking at him to say goodbye. And when we got in the car and we asked him his favourite part, he replied “going to my own home”. His favourite part was leaving, and it gutted me. We did prompt some other “good” memories out of him, but to see him so overwhelmed that he couldn’t even see the good on his own anymore broke me. I’ve been sad all day because of it.
I don’t actually have any other purpose with this blog post than to get some of the sad out. And to say to others, and my friends that I know are in similar situations, it’s so dang lonely being a mom of a special needs kid. It’s so hard to carry that grief that you keep thinking you’re mostly over and you keep thinking that you’ve mourned and having it slap you in the face again and again. And it’s so hard that every and any deviation from routine requires, at the very least, a mental and emotional bracing for so you’re ready in case it all hits the fan – even just going out with friends. I mentally count the number of people, the size of the room, if there are spaces he can retreat to, what we have the next day that it could snowball into.
Thankfully we are at a stage where we can finally say yes more often than no to everyday life things like this, but it still comes at a cost and part of me resents that and part of me grieves that. And while I’m so thankful that we’re “sitting on the fence” with a diagnosis, which means his coping skills are getting there and he’s learning to deal with life, it’s also hard because people see a little boy who is fine when, in reality, he has so many unseen struggles.
Yes, he has so much support. Yes, he will “be fine.” Yes, he is loved and advocated for, and “improving,” but he still shoulders burdens that a kid shouldn’t have to, and life will always be that much harder for him, and I hate that.
2 thoughts on “Life with a Child with Disabilities”
You are an amazing mother and your son is amazing as well. I know you know this. But I just want you to know that others see it too. I know your journey isn’t an easy one, and I know his isn’t either, but I believe it is one you are meant to walk together. So much love to you guys. Watching you with your boys is nothing short of heartwarming.
Oh girl, you don’t know how much I need to hear this right now. I feel like I’m constantly not enough for everyone <3.