Hey, there. How are you? I mean really, how are you?
Our lives have collectively hit an abrupt change, and some of those feeling it the hardest are our kids with special needs. Our kids for whom routine is paramount to having a successful day. From what I’m seeing on my special needs Facebook group feeds, we are not okay. I’m here to let you know you’re not alone, either.
As I write this, my 6-year-old with autism is circling the dining room table with a glue stick, intent on sticking pieces of paper together. The stack of paper right here is either unsatisfactory or she doesn’t see it—despite my gesturing. I’m not sure. But she’s circling, and whining. Oh good, she’s found the paper.
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At our house, our daughter was receiving 25 hours of ABA therapy at home each week before COVID-19 hit. Then, as you know all too well, it suddenly stopped. We tried in-office therapy for two days, and then one of her techs started showing the coronavirus symptoms. Everything moved to teletherapy.
I was simultaneously overwhelmed, scared, motivated, and determined.
Oh wait, she’s gluing the paper directly to the dining room table now. “Stick them together like this. That’s right. Good girl!”
After a few weeks of two teletherapy sessions a day, however, I felt like I found a rhythm. We had challenging behavior, to be sure. But our BCBA was in almost every session, and I was learning so much. Turn away and avoid contact when challenging behavior starts. Wait it out. Gesture, and use minimal verbal reinforcement.
Meanwhile, our daughter was thriving too. She is learning her colors. Navigating her Tobii Dynavox with increased skill. Able to sit and focus for longer periods of time. Tacting all the members of our family on her device. So much improvement.
Where’d the glue stick go? I seriously cannot find it. She’s moved on to books and is wanting me to comment on EVERY. SINGLE. PICTURE. Annnddd…she’s handed me a book and knocked over the bowl of chips she wanted. Then stepped on them. “Let’s clean them up! That’s right! Good girl!”
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And now, just when we’ve hit a rhythm, everything is changing again. They’ve opened the office for in-person sessions, but not in homes yet. We’re only letting her go on the days when they have one child at a time in the office. Everyone wears masks. Except our daughter, of course, because her sensory issues won’t let her keep it on for longer than 5 seconds. But, we’re working on it. Add it to the program.
But staff spending time on in-office visits mean less time available for teletherapy. I’ve lost some morning sessions for now. And the office looked at this as a chance to restructure and reorganize. For me, that means we lose our beloved BCBA who felt like a third parent for us. She was my rock. Another change. Another adjustment. We move forward.
Meanwhile, the screaming has increased. The elopement has increased. The kicking has increased. All of it has increased.
Now she’s spotted the trash bag I pulled and set to the side, and she’s dragging it through the rooms of the house in a big circle. “Hey, oldest kid, can you please hop off your video game and take the trash out? Watch out for the roofers, though. They’re throwing shingles down without looking. Don’t get hit!”
Then, there’s school to think about in the fall. Will we send her back? Social distancing and mask protocols don’t register in her unique brain. And she’s never done a full day of normal school in a general education classroom before, so what will it be like for her with a stressed-out teacher in a room full of stressed-out (or, maybe worse, nonchalant) kids?
It’s overwhelming. Goodness, I wish her therapist could be here to walk through this with us.
Was that the back door opening? Running to go check. Thank goodness for fences. But oof, the roofers.
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I know so many of you are dealing with different, hard things also. Kids with aggressive behavior. Partners who aren’t supportive or involved. Insurance companies who aren’t providing the coverage you hope for. Scary but necessary trips for medical intervention. Meltdowns at home. Feeling completely alone and unequipped to handle all of this. Kids who want to see their grandparents, friends, therapists. Delayed therapy, procedures, surgeries.
Oh shoot, I need to call and postpone her surgery.
Since this is also the first time I’ve parented a kid with autism through a pandemic, I don’t have a lot of advice. But I will say this: find the support you need. Send the awkward text to the other special needs parent you know to ask if you guys can be there for each other. Dig deep into those relationships where you, “Love from the center of who you are; don’t fake it” (Rom. 12:9).
Leave the toxic spaces. If a Facebook special needs parents group is leaving you feeling defeated, not encouraged, leave it.
If someone asks how they can pray, don’t say you’re fine. Be honest. Often, your friends will want to help but don’t realize the small complications that make everyday tasks so much harder. If you need help with a grocery run or dinner, ask.
She’s settled in with Cocomelon on the couch. Thank God for Cocomelon.
You’ll hear people say that you cannot get through this alone. But here’s the truth: you probably can. You’re used to fighting and pushing and making it work for your kid for so long already. One day at a time, right?
But if you’re willing to reach out and be vulnerable about what you need to fill you right now, the pressure on your chest will lighten just a little. The racing thoughts will slow down just a little. The need to go into the car or garage or backyard or wherever to just scream will lessen just a little.
Bono once said, “A friend is someone who lets you help.” Sometimes, the loving move in a friendship might actually be asking for help, not giving it. Right now, if you feel like you’re drowning, ask your friends to throw you a lifeline. It’s okay to need it.