My intro: Hi, I'm Kelly. I'm 33 years old and Autistic with SPD. My son is also Autistic with SPD and Childhood Apraxia of Speech. He is almost 5. I'm mixed, Caribbean and French Canadian, and my hubby is Canadian of Austrian and Irish heritage. So our son is one-quarter black, which is why I called my blog OneQuarterMama.ca. I tend to be very political in my writing, searching for equality in the world, but I mostly write about being Autistic.
Hubby and I both work in the tech industry full time. Our son attends a special school just for Autistics. I also have a Twitter, YouTube channel and Facebook page.
Kelly: I didn't have my ASD and SPD diagnosis until adulthood, last year, so I've gone through the majority of my life just thinking there was something wrong with me. Elementary was socially tough, but by the time I got to high school, I accepted and embraced my “weirdness." Rather than fighting it, I made use of it by becoming class clown. However, I still did not understand why I struggled to do certain things other people took for granted. The structure of elementary and high school suited me well, but I completely floundered my first semesters of CEGEP (college prep) and university without structure. I was, however, consistently on either the honor or scholar roll. So that studious, nerdy, quiet girl? Probably Autistic. We don't argue, we are extremely obedient, model students, but have maybe one or two friends, if any.
Kelly: Pssst, we also don't use functioning labels to describe our disability: http://www.onequartermama.ca/2013/12/why-i-dont-like-functioning-labels.html
My high school sweetheart's brother is also Autistic, so I think I simply attract patient men who can deal with autism. My husband is very calm, level and patient. I am more spontaneous and childlike. He is my grounding sounding board who says, "I don't think that's a good idea" to some of my crazier ideas. So there is love to be found in patient people. We also have a level of cooperation and teamwork that I don't know other couples maintain. We simply pick up each other's slack for the higher good of the family.
As for work, I did best when I was self-employed, but the ups and downs of that were tough for us early in our marriage. That being said, I consider myself chronically under-employed and jumped around from job to job in the past. Only recently have I become a bit more stable in that regard. This current job is the first time I've asked for accommodations (since I finally have a diagnosis) but it hasn't been met all that well. I may take the leap into entrepreneurship again soon.
I think the take away is that we can achieve a "normal" life, but I know for me, I need to make sure I don't get overwhelmed. I take a lot more breaks than most people. I don't drink alcohol at all or go to bed late. When I do go out and socialize, I need the next day to recover. I know my limits and have to stick to them if I want to remain productive. Constant self-care is the best way to put it. Also, I've learned my happiness is more important than money.
Kelly: I knew something wasn't quite right very early on, but I couldn't pinpoint what. Because of my degree in Linguistics, I knew he wasn't developing language skills normally. I knew he was most likely apraxic. Doctors did not believe me when I brought up his developmental issues, so I had to find a private psychologist to assess him. When we got the diagnosis of ASD and SPD, I was not at all surprised. It felt like a relief and validation to know I wasn't crazy or making things up. We got the apraxia diagnosis a year later and I was upset because it felt like a double-whammy of challenges for him. I didn't want him to have such a hard time growing up, like I did. I still consider his apraxia much more challenging to deal with than his autism. Probably because I can relate much more easily to the autistic experience.
Kelly: I have to make choices about what I can accomplish each day. I limit myself to usually one activity a day. So one day it's groceries, another day is laundry. There's a lot of teamwork involved in my daily living. I may load and start the dishwasher in the morning before work and my husband will empty it when he gets home from work. I will put the wash in the laundry and hubby will put it in the dryer. Everything is shared.
When it comes to parenting, I see it as an advantage. I see things from my son's perspective and understand how he experiences the world, for the most part. I often act as a behaviour decipherer for my husband. I'm like the Autistic Whisperer. I often say, “he’s doing that because of this and now he needs this." I think my understanding of him allows him to be freely who he is, and it must be nice for him.
I also don't know what it's like to parent any other way, so I'm just used to it. I have to repeat the same things hundreds of times a day, and it's not an issue for me. I know a lot of other parents are really bothered by certain autistic behaviours, but I know things will get better with time, so it's not a big deal to me.
Miggy: What are the biggest worries you face for your son?
Kelly: I fear abuse from others and people taking advantage of him. I want someone to love him well after I am gone. I want to know he will be well-loved and cared for. I also want him to feel productive and happy. I don't want him to suffer as much as I did. I set the bar high and I make sure he is well-loved and respected at home. I want him to be able to stand up for himself and know what is right. He should expect the best and he only deserves the best. I don't want anyone to ever convince him otherwise.
Kelly: I wish people had more tolerance for difference. We get stared at a lot while out in public, not just because we're an interracial family, but because of my son's behaviours. He jumps, flaps and hums almost constantly. I don't stop him from doing these things because it doesn't harm anyone. If he were hitting someone, I would do something, but his behaviours are not discipline issues. He is extremely obedient, but only when it really matters. I don't demand a perfect quiet child. I let him be his exuberant, happy self and I get a lot of dirty looks. Different is not wrong, it's just different. Different is not dangerous either. Jumping is just jumping. Singing is happy. Why get worked up about it? And if a singing jumping child is the worst thing you see in a grocery store today, and that makes you angry, you have problems and should have stayed home.
Kelly: Don't panic and there's no need to rush anything. It doesn't mean we will never learn, we just take a more scenic route :) The wheels in our heads are constantly turning. You think we're in our own world? We're not - unless you're extremely boring to us. Even if we're non-verbal, talk to us about science, about how the world works. Get down to our level and see the details. A lot of the time, parents think because their child doesn't parrot back the ABCs, they don't understand anything. Instead give them letters or a crayon and let them surprise you with the fact they can read and write. Or get them an iPad. Don't keep reading us baby books, move on to bigger subjects, because we're already past that. We hear you. We hear everything you say. Even as an adult in an office with people whispering, I hear your conversations and I remember them. All of it.
There's no rush or competition. This generation of kids will live to be at least 100 years old. They have plenty of time to master skills. Don't stress over milestones, just keep teaching us stuff. We are curious people - just keep feeding our brains facts. It doesn't matter if I can't tie my shoes, allow me to become a physicist and I'm sure I can pay someone to do that for me.
Also, read lots written by Autistic adults. A lot of us have had the wrong stuff done to us and we're willing to share what does work instead. Your number one job as a parent is to protect us from abuse. Protect us from people with bad intentions because we're not able to read people properly and we need help figuring out a good person from a bad one. Educate law enforcement so that they don't shoot us for not complying with requests to stop screaming, running or "acting oddly."
Let your child have a real childhood. Watch out for those who want to charge you tons of money for hours upon hours of "therapy." We need to play and learn on our own as well. Get into our interests. If we're into trains, buy us trains, and show us train documentaries. If we're fascinated by lock mechanisms, buy us a lock picking kit and practice locks. If we're into computers, teach us to code. We usually learn everything we can about one thing and then move on to something new. Support us in our interests and we will surprise you.
Thank you so much Kelly--that was fantastic. So informative and helpful. First, I have to say that I was struck with your advice at the end about supporting Autistic children in their interests--all I could think was, yeah I could be doing a better job with my own children in this area. Brilliant advice, especially for Autistic children. And I smiled when you said "we just take a more scenic route." Couldn't we all stand to slow down a little? But I absolutely love what you said about a parents number one job is to protect their Autistic children from abuse. Children by nature are more vulnerable than adults, but children with disabilities even more so! I too worry about the vulnerability of my daughters--particularly Lamp--so I'm very glad you mentioned this. Thanks again for sharing you and your son with us today! So enlightening and educational. Much love to you and your family.
If you or someone you know would like to participate in the Special Needs Spotlight series please email me, or have your friend/family member email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!