Have you ever heard the saying “It takes a village to raise a kid…”? This is especially true for the Autism world. There are so many different needs and no “one-stop shop” to cover all of them.
I remember in the beginning of our diagnosis we had no clue what to do. It was just our little family in the village. One little hut. We eventually started with the Regional Center who got us involved with an ABA company. Z was just starting school so we then had our teacher, the 1:1 aide, the speech therapist, the OT therapist, the nurse. We had the school district as we tried to navigate our IEP and find the best placement and goals. Our doctor was involved as we started trying to get referrals for different things. The village was slowly building and being decorated.
We have put a lot of effort into building this village. We invited all of these professionals into our village because we just didn’t have the answers. We needed people who were solely focused on behavior, speech, motor skills, or medicine because we simply could not manage it all ourselves. There is only so much our brains can take at any given time.
We’ve gone through stages with our village. Sometimes it includes ABA, sometimes music, sometimes surfing. We are always willing to try new therapies and theories so we mix up our deck quite a bit. As much as Z needs structure, he also needs change. And a lot of the changes were outside of our control and we had to manage the challenges that come with our ever-changing village.
At the end of 2019 we decided we needed a full revamp of our village. Things were not going well with some of our vendors. Z was not enjoying some of the therapies. We were dealing with a lot of stress with trying to maintain everything and deal with his meltdowns. So we wiped our slate clean. I spent about 5 months searching for new therapies, obtaining evaluations, scheduling our already hectic schedule. I spent hours on the phone with insurance to make everything happen.
We finally got everything in place and experienced our newly remodeled village. We could see our future and it was bright! But about a month later COVID-19 arrived………..
We lost our village. One day it was there, the next it was gone. Just gone…
I am not sure I will even be able to describe the feeling. I remember the initial shock, like is this for real? And then it quickly got replaced by anger and resentment. And if I’m being honest, I can’t get past this stage.
All of a sudden, I am responsible for EVERYTHING. All of my son’s progress (or lack thereof) will be MY FAULT. Will I be able to move him forward or are we slowly going to backpedal? How will I do what is needed while still working full time? I am the Mom, the teacher, the aide, the speech therapist, the OT therapist, the swim instructor (in a baby pool because that’s all we have), the music therapist, the behavioral therapist. And let’s not forget a wife and mother to three other kids (oh, and chef).
You may be thinking… Wait, they are doing “distance learning” for school and also Tele-therapy for other services! There are some great art project ideas online! Well, let’s talk about the reality of this..
As far as “distance learning” goes, our school and teacher have dropped the ball. It has been a month since the world ended and they have done NOTHING. We actually had to reach out to our teacher and push for some sort of assistance. But we were told they were not giving any support and not doing any IEPs. We had not been contacted by our speech or OT therapist. Next, my dear hubby got on the phone with the District. Typical kids at our school were receiving instruction but not those in Special Education and that is totally discriminatory (and against the law). After our talk with the District, we coincidentally received a flowery letter from the District providing future dates of when things will be in place. But, sad to say, I don’t have much faith at this point.
We’ve done some Tele-therapy sessions with our private clinic. And while they may have been “successful” as far as Z and the therapist it took a lot of our effort. Z usually requires a 1:1 aide at school. So our new job is to be his aide for his therapy sessions. He has a hard time focusing and will not stay on task if there is no one there to guide him. And while I would categorize him as a visual learner, we have come to discover that there is a huge difference between physically visual and video visual (patent pending on those terms btw…). So “distance learning” has not been a good fit as far as the amount of our time involved and Z’s focus.
I see all of these posts online of parents working side-by-side with their kid tagged as #homeschool #distancelearning and #workbuddy. This is not my world. My world right now looks A LOT different than the typical family. Before the end of the world I worked full time and was remote. After the end of the world I am still working full time and remote. Nothing has changed. If anything, I have more work due to what is happening with the rest of the world. But now I am also responsible for my son’s whole world of therapy. For the monumental task of trying to give him an education.
He will not sit in front of the computer on his own. He will not understand the activities on the screen. He will gladly walk away and return to his iPad or bedroom. So we have to be a part of EVERYTHING. And by that I mean full-hands-on assistance. Blocking him from running and managing his meltdowns when the work is too much. Z hates doing work. On a good day, he hates doing anything that is not his idea. And trust me, school or speech or OT will NEVER be his idea.
And here’s a secret about me… I don’t want to do these things. I was perfectly happy letting the professionals take the lead, relied on their strength and knowledge to get my son to the next level. My role was to manage the vendors and get him to sessions on time and love him no matter his challenges. I did not have kids so I could teach them. I do not know how to teach someone, especially my own kid. Yeah, I said that…
And I know other parents are struggling too. I know other parents are working full-time and assisting their kids. I know, trust me. But I am here to scream at the top of my lungs that unless you are a special needs parent then you are not like me. Your job is easier and I think everyone needs to get honest about that. This is not fair, this is not equal. And everyone not complying with the social distancing rules are not supporting families like mine.
We NEED to return to normal. My kid NEEDS his services. My youngest son NEEDS to start services. This mama NEEDS respite. This mama NEEDS help.
So please, do everything you can to help bring our village back. And to those professionals that are doing their best to still be a part of our village, I appreciate you. To those from the past that have reached out to me, I appreciate you. It is not easy and you are trying and I see that. I admire that. Thank you.
And most important, to the other special needs parents… I see you. I see what this has caused to your once organized village. Your hard work all gone down the drain. The rug swept out from under you in the blink of an eye. I see you and I am with you. Most days will not be easy. Lets face it, every day will be rough. But we have weathered EVERY storm to this day and are STRONGER for all of them. After this one, we really will be super-heroes!
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Tilted Axis 