January has been a rough month for Teo. And judging from the many conversations I’ve had with other Autism moms, he is not definitely alone.
It’s like a flip switched and Mateo decided he’s sooooo over COVID. His sleep patterns are more erratic than normal. We’ve had bouts of aggression that we have not had in years. His stimming has increased to the levels we saw when schools first closed almost a year ago. His frustrations and anxiety with this not-so-new norm is clear to anyone who knows him.
Just too much
Think about it. Like with all of us, his world changed abruptly last March. We’ve tried to adjust and create much-needed new routines and schedules, but those keep changing too. This is especially hard for our kids who crave that routine. First they lost school and many had a hard time understanding why. Then mommy and daddy are at home every day, then they are not. Then they are back again. Then we can go out and play, then we can’t. Every time our kids feel like they are ‘getting’ this new routine, something happens and changes it.
It’s confusing for all of us, but for our kids who have a hard time processing change and an even more difficult time transitioning from one thing to the next – it’s supreme overload. They have had enough. They have reached their breaking point. So now, parents who never or rarely dealt with aggression, are suddenly trying to figure out what to do. Some parents are averaging 2-3 hours sleep a night because their sons aren’t sleeping. Some are having a really hard time just falling asleep because they aren’t able to burn the way-above average energy they have since they are stuck at home.
Caregiver Helplessness
We are trying to help them as parents. As you might have seen on Channel 5 News this week, one of our awesome Autism Moms explained how we as parents are trying to help. We keep learning and attending trainings, watching YouTube videos, taking part in parent support groups. We do anything to get advice and strategies to help our child. All of you as parents know that it hurts so much to watch our kids in pain- to watch them struggle. And that’s what many of our special needs parents are dealing with right now. We see what is happening with them and we honestly don’t know how to help or are trying to help, but it’s not quite working.
The Breakdown
So with all this extra pressure and work trying to help our kids who were already having a hard time in this world before COVID, we, as special needs caregivers, are on the brink too. The lack of sleep, the constant battle to try to teach and help with things that should be easy: feeding, bathing, handling loud noises, and now dealing with trying to be teacher and the aggression…It adds up.
This week, one mom messaged me to tell me how guilty she felt because she locked herself in the bathroom to cry. She’s swamped at work. Her son hasn’t been sleeping well and is struggling with eating. He was in the middle of a bad meltdown and she broke. She locked herself in the bathroom.
Another mom wrote to me this week too to talk about how she cries a lot. She asks God, why her child? Why does she have to suffer? Because a lot of these problems ARE painful to our children. It’s not just difficult. It’s downright painful.
Taking A Moment
Last week I wrote about trying not to judge. I asked you all to please take the challenge. Support, learn, ask questions, but try not to judge because if you don’t live it, you truly don’t know. These moms feel guilty about not being able to do enough to help their children. They feel weak that they cry and might breakdown for a couple moments. It breaks their heart so much they literally lock themselves in the bathroom for a couple minutes to cry – even though this makes them feel more guilty that they are not out there helping their child. They judge themselves harder than anyone else can. I know.
I’ve been there. I am there so many days. In 2017, Mateo had so many problems with aggression, I had to pull him out of school. That year, me locking myself in the bathroom was, I am ashamed to admit, a pretty often occurrence. Most times, I tried to follow what the therapists told me to try to ensure he wouldn’t hurt himself or me.
The Bathroom
There were some times though, when my face was bleeding from scratching and I had bite marks on my hand, that I just couldn’t do it anymore.I knew he was struggling and didn’t understand what he was doing in that moment. I knew he was in pain. But I couldn’t deal anymore. So, I would lock myself in the bathroom – if only for a few minutes. I’d cry. I’d try to breathe and dig for more patience. I’d scream at God.
I still have these moments every now and again. Thank GOD its not aggression anymore. Sometimes I’m at the end of my rope and I need a little breather. Sometimes he’s crying like he’s in pain, but he won’t let me comfort him. Worse, I don’t even know why he’s crying or what to do. So yes, I need to run and hide. It makes me sound weak, I know. But honestly, sometimes I just need a couple minutes.
So yes, the bathroom is my safe haven. It’s the room where I can lock myself in and cry or scream. It’s where I go to count to 10 and remind myself I can do this. I must do this. It’s where I go to reboot or reset. I go there to think about all the wonderful things about my son (there are plenty) to help give me strength. He’s the strongest person I know so I gotta be strong too to help him. My troubles and hardships are NOTHING compared to his, and 90 percent of the day he has a big smile on his face.
Challenge
So I will end this rather long blog (sorry about that) in kinda the same way I ended last week’s. This time to all you Special Needs Parents and Caregivers: please go easy on the self-judgement. I know you are trying your best. I KNOW you love your kids. It’s ok to take a couple minutes to cry or scream or hide away. You’ll come back a little stronger and get right back into helping your little love. And always, remember you are not alone. Together we can help support each other.
