While I try to be very positive in this blog and in life – there are days I feel like I’m in the fight of my life.
I’ve had several of them lately. It’s a combination of my own responsibilities and being a mom – but not just any ‘ol mom. A mom to a boy (er…young man) who has some extra very real stuff going on and that extra stuff is here to stay, forever. Get ready for some real honesty. I thought to myself the other day… “I wonder what it would be like to not have autism in our family. I wonder what it would be like to just deal with ‘regular’ mom stuff. I wonder what it would be like to just do the work thing and then homework, supper, bed, and maybe a couple of social snafu’s.”
Let me also say that I don’t know of ANY mom who only has ‘regular’ mom stuff to deal with. What is ‘regular’ stuff anyway? All of our children are facing situations and struggles…all of them, and I get that.
This week has just been more full of these days…days of watching my son struggle, and I can’t do a damn thing to help.
Autism is a part of who he is and we long ago ‘accepted’ that (not like there was a choice). We’re constantly trying to make the best of it all – consistently talking about how autism makes him unique and wonderful. Honestly though? Sometimes I hate it. There are days when it feels like it’s a heavy boot pushing him down, further and further towards the ground and I can’t do anything but watch. There are days when it feels like a dark cloud is looming over his head and I can’t do anything but watch. There are days when it seems his body and brain have been taken over by someone I don’t know and I can’t do anything but watch.
There are days when I watch him try to help others and they don’t respond with gratitude and I can’t do anything but watch. There are days when I watch and listen to others react to him and I can’t do anything but watch. There are moments where I watch him trying to communicate to someone not willing to wait for his words and I can’t do anything but watch. There are days where his head hangs to his chest and I can’t do anything but watch…always on the sidelines.
Hold on, that’s not entirely true…I do ‘do’ something. I put on a smile. I try to make him laugh. I hug him. I tell him how much I love him. I try coaxing his troubles out of him. Truth be known though…there are moments that it doesn’t work.
Those are the moments that I’m reminded of our reality. This is all my perception, I can’t begin to imagine what it feels like to him.
In these moments I’m left feeling like I’m grasping at his fingertips to bring him back and I’m just barely hanging on. It’s like a bad dream…I keep reaching and he keeps getting further away from me. He’s falling away and I’m grasping at anything to not let it take hold…to not let it pull him down.
Fighting for him. Fighting for him when he can’t.
Being his happy. Being his happy when he can’t.
He’s had a rough week and everyone around him knows. These are the weeks that I become numb. Numb while reading messages from teachers, numb while watching him with peers, numb watching him try to make sense of a sentence, numb. These are the weeks that I have to dig just a bit deeper to not lose it.
Weeks like this are the problem with Tucker’s label of ‘high-functioning.’ High-functioning, my ass (excuse my cursing…I apologize). I hate that label.
He’s dresses himself.
He’s feeding himself.
He’s going to school every day.
He’s mostly doing what he should.
He’s compliant with most of my requests.
He’s functioning all right – but he’s also been in tears nearly every morning and night. He’s having troubles at school. Last night while sitting in our vehicle I finally coaxed him into talking to me. While holding back tears, lip quivering, holding and spinning his football he told me that ‘nothing in the world was right.’ He told me he ‘hated everything except you, mom.’ He told me that he ‘isn’t smart and will not go to college.’ He told me he, ‘can’t do anything right.’ Then, he repeatedly hit his head with his football. Over and over again….and again…and again. I asked him to stop. He continued. I finally took the football and cradled his head into my chest. I didn’t cry.
“I’m just having a bad week mom. My brain isn’t right.”
I was tired, frozen in the moment, and numb. The only thing I could muster was, “I love you.”
He got out of the vehicle and then I sat silently for 10 minutes. I know his brain isn’t ‘right.’ I want SO badly to help him through it, but I can’t imagine how much it’s hurting him. Because he is ‘high-functioning’ he knows what he should do….he can logically understand…but cannot get there. How is that ‘high-functioning?” Sounds more like a never-ending nightmare to me.
I went inside and melted into my husband’s arms, into 1,000 pieces and what felt like 10,000 tears. There are these weeks…the very real weeks.
The weeks where the greatest fight is to not try to fix it…because I can’t. I don’t know how.
The weeks where the greatest fight is to simply accept “having a bad week” because it’s the only explanation he can give.
The weeks where the greatest fight is to not give in to anger, frustration, and heartache.
The weeks where, honestly, the greatest fight is to stretch just bit more, to keep holding on, to not let go.
Because love wins, always.
Next week will be better.