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[Author’s note, January 2021: The language used in this post is outdated and considered ableist now. Functioning labels and euphemisms for autism are no longer acceptable by the autistic community, of which I am also a member.]
Last year, we got the diagnosis that confirmed my suspicions concerning TJ’s behavior and mannerisms. Asperger Syndrome. (It doesn’t officially have an apostrophe in there, but so many people use it that I think it’s now accepted colloquially as Asperger’s Syndrome.) He’s on the autism spectrum, albeit the high functioning end. Like any parent of a child with Asperger’s, I read up a lot on the subject, learned as much as I could, and I’m using it to fight for him in the school system.
I’ve also learned a bit more about myself. Namely, that I have Asperger Syndrome, too. I’m not going to seek an official medical diagnosis. I don’t need to be a card-carrying member of the club when I already know the secret handshake. But all of my research done on my son’s behalf… my childhood suddenly made much more sense. My complete lack of fashion sense. How I could never be called graceful, and I always look awkward dancing. My penchant for obsessing over things (often computer-related) and for ruminating about things that really don’t matter. How I really wanted to do the whole psychology thing – I even got my Master’s degree in it – but I can’t read people with any sort of accuracy. The picky eating. The anxiety. The social awkwardness. And so on…
So here I am, trying to raise my son so that he can have a more normal childhood than I had. No one knew what Asperger Syndrome was when I was growing up. I was just the weird girl with the thick glasses who wore pants with elastic waistbands and participated in the gifted & talented program. I want more for TJ than that.
Social Skills
I’m struggling to teach TJ proper social skills, as all parents of preschoolers do – even the kids who aren’t on the spectrum. Always say please and thank you. Don’t take things out of other people’s hands. Look at people when you’re talking to them. No really… LOOK at people when you’re talking to them, and when they’re talking to you. TJ can stare into your soul sometimes, but other times he’ll absolutely refuse to look at you when you’re talking to him. It’s infuriating. But I’ve started noticing that I look down a lot, or glance nervously around the room when talking to people because I don’t want them to think I’m just staring at them. How can I help TJ with his eye contact issues when I can’t fix my own? TJ always has to be winning at games, too. He threw a fit one day when playing Chutes & Ladders because he was close to the end and got sent back – even though he was still in the lead. I’m trying to get him to accept this sort of thing as part of the game and part of life, but I get really angry when I lose at games, too. It was this sort of thing that pushed me to get top grades all through school. I got mad at myself over an A- on a paper because I should have gotten an A. I hope that TJ’s need to be the best doesn’t cause him as much stress in school as it caused me.
Social Interaction
News flash: I’m a loner. It’s strange, because I crave attention approval from everyone. I get very upset if people don’t like me. I love my husband and my son. I love my family and my friends. But most of the time, I really just want to carry out solitary activities. Leave me alone with my Twitter and my computer games and my blogging and my reading materials… and I’ll be great. I know I’m supposed to be encouraging TJ to interact with us more often, not just because it’s therapeutic, but because that’s what families are supposed to do… right? Families should do things together. But most often, we’re all in the same room doing our own solitary activities. When the CFS hasn’t rendered me useless, I’ll try to get up and play with TJ when he asks me to play with him, but I rarely initiate Familial Activity Time. His teachers say he prefers to do his own thing in school sometimes instead of participating with the rest of the class, but what can I say? I can’t blame him for wanting to stick it out alone sometimes.
Picky Eating and Sensory Issues
As parents, we’re supposed to model healthy behaviors for our children. We’re supposed to eat our vegetables so that the kids will eat their vegetables. But you know what? Most vegetables make me gag. To eat a mouthful of beans, I would literally have to choke it down and try not to throw up. I remember trying to convince myself to eat a banana when I was pregnant, because I wanted my little TJ to get better nutrition. I gagged on every bite and had to throw out half of the stupid thing. Textures of foods bother me. I get mad at TJ for not wanting to try different foods, but I won’t do to him what my parents did to me. There’s an epic story they still tell about how I sat in front of a bowl of goulash for three hours as they tried to hold my nose and make me eat it. I remember my mom saying things like, “Stop making yourself gag.” Like I had a choice in the matter. How can I model healthy eating behaviors when I just don’t have them?
We both have sensory issues, too, although his are more pronounced than mine. He can’t stand tags in clothing, but he’ll wear his underwear backwards. There are a lot of things I just won’t clean because of the extreme anxiety I have about touching anything slimy or otherwise unpleasant. Thankfully, TJ’s occupational therapist has gotten him playing with shaving cream, silly putty, and all manners of different textures so he becomes less averse to them. I have a hard time when he wants me to hold something that I find gross, and my exceptionally sensitive sense of smell can make sickness hard for me. The sight and smell of vomit is not just unpleasant for me – it can make me gag and choke down my own vomit. When TJ threw up on me a few years ago, I had to stand stock still while my mom and husband helped wipe me down and strip me so I could jump in the shower – at my mom’s house. When we’re home and TJ throws up, Tom helps me get TJ’s clothes off so I can bathe him and he can clean up the sheets/floor/furniture. If I’m alone when it happens, I can only work on the cleanup for short periods of time before the smell overwhelms me; I don’t want to add to the mess.
Personal Growth Never Ends
As I try to help TJ along this journey, I suppose he is also helping me to grow and understand parts of myself. As my psychiatrist has put it – when we help our kids to be true to themselves, we can help ourselves heal our own childhood traumas. I was never beaten or touched inappropriately – thank God. But little traumas have left scars along the way – getting shunned by the cool kids after I’d befriended them when they were the new kids in class, being taunted for not wearing the right clothes, being force-fed foods that made me gag, being told not to cry or I’d get ruts in my face… I hope that my experience with these things will help TJ avoid the same fate… and maybe help me get some closure on these things that have caused me to be such an anxious adult.
I’m not just raising a kid with Asperger Syndrome. I’m raising a kid… with Asperger Syndrome.
It’s gonna be quite a ride.
Read my Big Fat Medical Update for more details.
That’s me: Christina Gleason. I’m a writer, editor, and disability advocate. I'm a multiply disabled autistic lady doing my best in this world built for abled people. I’m a geek for grammar, fantasy, and casual gaming. I hate vegetables. I cannot reliably speak, so I’ll happily conduct business over email or messaging instead.
[…] This post was mentioned on Twitter by Christina Gleason, TheAngelForever. TheAngelForever said: Powerful read – RT: CutestKidEver: Raising Kids with Asperger Syndrome – The Blind Leading the Blind. http://kl.am/RaisingKidsAspergers […]
You are doing an amazing job there Mom! The simple things like being TJ’s number one advocate, doing research on everything, and understanding where he is coming from are key. Always remember you have friends who are here to help and know how tricky it is to fight the system.
Thank you. I’ve gotten amazing support from people like you who I’ve met because of Twitter and blogging. Thank you for being a friend. 🙂
Thanks for sharing so much with all of us. You are an awesome mom……and he’s lucky to have you. 🙂
We are all our histories and our choices. We all learn from life’s experiences and use them to raise our own children. TJ will be ok. He has a great mom.
Your story could be mine. We got my son’s diagnoses and every moment was a confirmation of why my childhood was so terribly difficult. It was my diagnoses too. Everyday I do my best to give my son what I was never given. Understanding, patience, respect & so much more. I wish you & your son the best. Know that you aren’t alone.
Wow. That’s a powerful story. You’ll do just fine I’m sure. You are aware, and attuned. And you have SUPPORT!
I wish you the best in raising him, and in coping and finding the right ways…
I think your son is very lucky to have you as his Mum. My husband wasn’t diagnosed as a child and I can’t tell you how much I wish he’d had a mother like you to help him make sense of his world.
Have you heard about this site – http://www.softclothing.net/ – I heard about it last week. The clothes look really comfy.
SassyCupcakes, I’m actually doing a review for Soft Clothing… once I remember to write it. I became an affiliate of their site, too. I’m a fan!
Christina, you are very brave to write this and share these memories and daily trials you still face. I don’t have Asperger Syndrome, but I can identify with some of it because of other issues I deal with, as you know. Reading this brought tears to my eyes and made me wish I’d known you as a kid so I could have been your friend, thick glasses, elastic pants and all! 🙂 But it also made me admire the woman you’ve become, one who has courage, compassion, and who uses that drive not to get good grades, but to be successful, and to share that success with others. I’m glad to know you, at least virtually. 🙂
Thank you, Michelle. Thank you, EVERYONE. Every comment I read here is giving me something to smile about.
I juat happened to stumble upon your blog, and I just wanted to tell you that I can already tell just by reading this into a few pages how strong of a person you are, not only for your son, but also for yourself. My 20 year old brother was diagnosed with Aspergers, and since his diagnosis he has made great strides simply by becoming involoved in an Asperger’s support group his doctor suggested. I know it warms my parents hearts to see people accepting him for who he is without reservations. Stick to your guns, trust your gut, and always hold your head high. Compassion, love, and understanding are some of the best gifts you can give to your son. Good luck with everything!
I am a retired teacher with 30 years experience in the classroom and more years as a mother and grandmother of TS and sensory sensitive offspring. Like you, it was when I saw our daughter’s child growing up with Tourette’s that I understood what she had to go through as a child before a diagnosis was made. Upon retirement, I embarked on an interesting project with my TS daughter who undertook the challenge of creating a safe, portable and effective chewable fidget for her child with TS and SP issues and other special needs individuals. Our unique Kid Companion was designed to North American safety standards from breakaway clasps, to lanyard to pendants. It can be worn around the neck or through belt hoops and can even be personalized. Please visit http://www.chewelry.ca for more information. I would appreciate your qualified feedback 🙂
This was really interesting to read. I’m going through a similar situation and just starting to piece my own childhood back together with my new knowledge as well as trying to save my son from some of the same traumas.
You’re doing a great job, mama! Remember, you’ll be the best expert on your son because you know better than anyone what he goes through and because you can give him exactly what he needs – unconditional love.
I can definitely relate to you on this. When people suggested I get my son tested I remember thinking, “but he acts just like me.” How I could I have noticed any of his issues when I had the very same issues and assumed they were normal.
It certainly is hard trying to break habits in your own children that you yourself have.
Thanks for the great article.
Christina,
Reading this makes me even more happy that I got to meet you in person. You are truly amazing, and I’m sure TJ is too. 🙂 I too was the funny looking kid with thick glasses, though I was made fun of for walking funny, something I was lucky to be able to do in the first place. Now I’m just the average (albeit short and fat right now, LOL) looking adult with thick glasses, who still walks funny, but I have a much more compassionate group of friends both online and off. 🙂
I also have to deal with the veggie and sensitivity to smells which make it difficult to get Joe to eat the right foods… especially with a husband who has the mentality that it *must* be done. I always tell him he’s going to scar Joe the same way I was when I was forced to eat the foods that made me throw up; It’s so relieving to see I’m not alone! At any rate, I don’t think we’ll hurt the kids too bad when they miss veggies. 🙂 *hugs*
Christina, you are amazing! I read your stories (…and your Dear Kid posts) and you touch my heart with each and every word you write. I am so grateful to have found your blog…and TJ will be forever grateful for having such a wonderful, caring mother.
Thank you for sharing this…
Stefanie
[…] been reading emotional, inspiring posts such as those on Life With Aspergers , Wrong Planet , and Cutest Kid Ever — but not until recently had I started to connect the […]
[…] Raising Kids with Asperger's Syndrome – Blind Leading the Blind … […]
ME too!!! Every word…spoke to me…I’ve often thought to myself that my child is just like me and that I must have Asperger Syndrome too…but my friends and family scoff – my husband gives my son and I so much flack over what we will and will not eat….he doesn’t believe in it being a result of a syndrome, but thinks it is lazy parenting on my part….if he only knew how I agonize over my son’s food fetish…and my own
[…] Getting healthier involves a lot of things for me. I’ve struggled with depression and anxiety for years. I have Chronic Fatigue Syndrome. When I’m depressed, sometimes food is the only thing I can derive pleasure from – aside from the temporary boon I get from hugs from my family – and I have no real willpower to speak of. I am a very picky eater – not because I’m finicky and want to be difficult, but because I have sensory issues and some foods just make me gag. […]