4/7/23
When I wrote my last post I had a lot of worries. (If you stick around, you’ll realize I tend to have a lot of those in general.) I worried about going public with a blog in general, and being vulnerable with both my writing and my feelings. I worried about being judged for the things that are reality for my family. I worried mostly that I would sound ungrateful for this beautiful life that I’ve been given – that it would sound too negative, which is not what I wanted.
What I intended was to give myself an outlet. I wanted to say the things I always want to share with parents I run into at work, but it isn’t the right time or place. I wanted to feel seen or heard in this hard, lonely journey of single parenting a special needs child. I wanted someone else to have the “me too” feeling I’ve felt from others’ admissions.
Unfortunately, I’m afraid the post had some unintentional consequences as well. It was not meant to point fingers, blame, or shame. It was not about the reader, but the writer. It was simply about the hard.
In this month of autism awareness and acceptance, I’d also love to tell you about the helpers along our journey. There have been many, but some just stand out.
The first is bittersweet. I bet every autism parent can tell you in detail the moment someone first suggested to them that their child was on the spectrum. I cringe when I hear of professionals or well-meaning family members doing so without tact or before parents are ready – scaring parents off in ways that delay them seeking out diagnosis and services. The first person to say it to me said it randomly during the rush of picking up four kids from daycare one day. Honestly, I think I laughed. I’m in the field. My son had a million other reasons for his delays. I would obviously know if he had autism. This person loved him, and I appreciated their concern, but obviously she was stupid. Nice, huh? But, honestly, that’s what my thoughts were. I dismissed the comment. For over a year. (We can digest guilt in a later post I’m sure.) After his diagnosis I made sure to reach out to this person and tell her she was the first person to see all of him, and to thank her for loving him the way she does. I hope others have similar reflections.
The second person to go out their way for us was also before his diagnosis. Transitions are hard for our kiddos, but let’s be honest, they are just as scary for us! Transitioning from early intervention to preschool special education was stressful – and it’s actually what I do for a living. I know the ins and outs, and I know the rules. I also know what my child needs. I will be forever grateful for the first school based speech-language pathologist that we encountered. My son can do many rote things, in a perfect setting, when well-regulated. That said, he was able to score on her test above the cut off for qualifying for services. I have enough experience to know that more often than not that would have been the end of it. However, this amazing SLP also took time to see him and to hear me. She understood that words are there, but do not come easy. She understood that functional communication is different than test performance. She understood his social communication deficits. She not only qualified him for services, she went so far as to suggest the need for him to have access to augmentative and alternative communication devices. She set him on a path to make steady progress throughout these past two years in preschool. I am so proud of him, and so grateful for her (and the SLP who has implemented the services since).
I mentioned before that we had behavioral therapy at home that didn’t go so well. My son obviously gets behavioral support at school too. While our home providers quit, the behavior therapist at my son’s school never stops. At this point he hardly has any aggressive behaviors at school, and I give most of the credit to her hard work. She’s the type of educator that thinks about kids and works nonstop. When my son was having the hardest times, she often had to meet me in the parking lot to help me transition him into the building. She was never anything but amazing with him, and never made me feel like it was my fault. She would text me on the weekends because she had an idea about something that might work for him and couldn’t wait until Monday to run it by me. In his collection of lions, one of his favorites is a collectable Mufasa she found on Etsy for him – “just because.” When he almost broke her glasses, it didn’t phase her. She just started wearing an older pair to work. When things started to improve and he would have a bad moment, she would start to blame herself as part of the trigger. Now that he’s doing so much better, she often stops me to tell me something good she observed him do. She is genuinely proud of him and his growth. She still loves him, after all the grumpy greetings, hits, bite attempts, and scratches. Don’t get me wrong, she still has her running shoes on and her guard up around him, but to find someone who isn’t related to your child who can take his worst and only keep track of his best is amazing.
We have another person like that. She was my person (sorry, die hard Grey’s Anatomy fan here), but I’m pretty sure my son has decided now that she’s his. And I think I have to be okay with that. My son is slow to warm up to people, and allows few to comfort him. He can be difficult to read and harder to de-escalate. Often he will insist that only I can assist him with anything, and that can be exhausting. My best friend is often the exception, and my only respite. She is also the one that has walked right beside us in this journey. The one that was in the room when a diagnosis was given because although part of me knew it was coming, I just couldn’t hear it alone. She’s the one that has attended everyone of his IEP meetings with me. I think teams think she’s there to enforce something or to intimidate, but she’s really there holding me up. She keeps me both realistic and hopeful. She reminds me of what was said when I feel so overwhelmed by my own emotions that I can’t remember simple details. If anyone has seen all of what autism looks like for us, its her. She has endured the bites, the scratches, the bruises. She has literally run across the neighborhood because I’m restraining my own child and need assistance. She has untangled his fingers from my hair in order to set me free, she has made herself a shield between him and his siblings. She has laughed with us and cried with us. She has grieved with me, but always reminds me of how far he has come and makes me think of how far he might go. She is all in this autism thing with us. If you have someone like that, don’t lose it.