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Being an Aspie mom parenting an Aspie son - the long journey into figuring it all out

Updated on May 15, 2013

Something's different....

While reading this article please keep in mind I had no idea about Asperger's until I was 34, I am 35 now. I've always been different and have had many difficulties during life so when I was trying to figure myself out I figured my son out as well! Putting me in the right direction for assessments.

I was elated when I had my son, in absolute awe I had created him. I felt such deep love I had never felt before in my entire life. He had become my life, I was going to live for him, and do whatever I needed to do to make sure he was happy and healthy.

But my son never seemed happy. Healthy yes, he was growing well, hitting milestones on time, but something was "off". He cried for the majority of his first year of life and had terrible separation anxiety. He couldn't sleep unless he was in motion. I was exhausted, he was exhausted.

I noticed early on that the formula I was feeding him gave him a horrible rash all over his cheeks. He was very itchy and uncomfortable. I switched him to a soy based formula and that entire problem disappeared. It was around that time I was realizing I was lactose intolerant and cut out lactose from my diet as well. At least I could fix that issue, I wasn't sick anymore and he wasn't itchy with rashes.

I was up with him as a baby all night, maybe getting a few hours of sleep. He had a hard time sleeping and wow was I tired. I did eventually buy a swing for babies and it was a life saver. He loved it! But I always thought "is this normal? do all babies have this much trouble sleeping?".

As he grew other issues came to light that kept me questioning "is he ok? is this normal?". I didn't have any other children to compare him with, he was my first so it was a bit difficult for me. My sister had 3 boys so if I ever needed advice or guidance or questions answered I would go to her. She has a child with ADHD but there is no autism.

When he was 1 or so we noticed he was a lot more cautious than other children. He never climbed or put himself in any danger when I would see other young toddlers climbing and falling non stop. He was "easy" in that department. The one major problem I picked up on when he entered the life as a toddler was his social differences. He didn't want to play with other kids, but he could play alongside of them.

Once he was able to talk a bit more he wouldn't try and talk TO you, he would copy what you have said, and say the same words over and over again. If he were to play with another child his age he would only repeat what that child was saying, he wouldn't attempt conversation of any sort. I also noticed he did not like to be touched by other kids or people.

The early years were hard, because I didn't know what was normal and what wasn't. For the most part I would tell people he was shy, that's all. But there was so much more to it than that...

My son as a toddler and preschooler

My sons biggest interest as a toddler was computers. He learned to use one before he was 2 and knew how to navigate to where he wanted to go easily. I use to take videos of him on my computer when he was still in diapers just in awe! I couldn't believe what he could do. It was a definite interest for him, and that interest has stayed!!

I remember him being off in his own world a lot of the time. I have many videos of him growing up and this is one thing I have noticed. He will just be standing and staring and it's hard to get his attention, and when he looks at you he has a "lost" kind of look to his eyes. I could tell a lot was going on in his head. If I wanted to get his attention while video taping him he would fixate on the camera and get interested in that a bit too much so in order to get videos of him I had to hide the fact that I was video taping, or just not tell him to look my way ;P

I noticed he hated shorts and would constantly yank at them and pull them down so they were longer, he had a hard time transitioning from full length pants to shorts.

He seemed to have his own language that only he could understand. He used that language more than english actually. He would babble in his own language and throw in real words every now and then, but much more preferred his own language.

He was able to understand me and do tasks I asked of him, he was just not able to communicate verbally very well.

He had plenty of meltdowns that were not your standard tantrum. These meltdowns could last for hours. Since he had extreme separation anxiety he couldn't sleep on his own, I tried forever but when I put him in his crib he would cry so hard he would throw up violently. He ended up sleeping with me for naps and every single night. He also seemed on edge a lot like he could have a meltdown at any small thing. You had to be very careful with him not to upset him.

He started drawing very young and his pictures were very detailed. One picture told a very long story. Then he got into drawing patterns where every piece had to match.

He would grow limp if a family member would pick him up and give him love. It was very obvious he wanted to get free of them. But instead of throwing a fit over it he would grow limp and sort of freeze up, not knowing what to do or how to react.

If someone was around he would always look at me instead of them.

He would get into these fits of excitement where he would have these long drawn out conversations, mostly in his own language, but he would use elaborate hand movements and gestures. At the time I thought it was hilarious and would video tape it every time. Just the way he was acting was so.....odd!! He wouldn't be speaking english though, which I guess made it all the more comical for me. He really seemed to be enjoying himself at these times. He only did it around me and his sister, no one else. I am still not sure, to this day, if I was actually a part of those conversations or not? I think he was just practicing his speech in his own way, and it was exciting to him. I didn't happen often though. It was the hand movements that really caught my eye though.

The way my son walked and moved just always seemed odd to me. He didn't show major signs of Autism like walking on his toes or anything, so autism never even crossed my mind, but there were other things there that pushed him apart from other kids his age. The way he ran was quite peculiar as he would hold his arms out to the side mostly, and I hope he never reads this, but I would say he ran like a girl :) Not a boy. And I mentioned above he was very cautious with his movements and his hands and arms might be out a lot.

He attempted to play with other kids but I would say he got over stimulated too quickly. Other kids liked to touch him and maybe hold his hands or even dance with him, my son was uncomfortable at these times. He preferred to play alongside them, but not really "with" them. And mostly just liked to hear them talk and repeat what they said.

He has a younger sister and as she grew a bit he would play with her, but again it was more off to the side. I have videos of them pretending to talk on the phone together, it is so sweet, but my daughter who was 1 at the time, 2 years younger than my son, was attempting to make conversation while my son was just saying "yea" or nodding. My girl actually showed more autistic traits but definitely is not on the spectrum because she is a huge social butterfly. But when she was younger she would sit on the couch and rock on it hitting her back hard on the couch, it was fun for her, my boy would sit next to her and mimic all of her movements. He did that a lot with her, and would repeat what she said as well.

In one of my videos where he is maybe 3 he is sitting so perfectly happy in front of his older cousin watching him put together train tracks. He isn't saying anything, or looking at his cousin, but he is watching him put together the tracks. He looks so completely absorbed in this it was amazing. His cousin asks him questions and wants him to help him put together the track but my son was happy enough just watching. I think he found it fascinating?

He would never go up to a kid or someone he didn't know and talk to them, he never attempted to start a conversation.

My son from ages 5 to 8

This is where we are now, he is 8 and will be 9 soon. A lot has changed as he's grown, but really a lot is still the same. I will try and compare to what was written above when he was still a toddler, to how he is now.

I would first like to say that meltdowns were really quite bad when he was younger, up until the age of 7.

Now mentioning his walk/run first. He still holds his arms and hands awkwardly when he is running, actually his whole body seems to be like a loose noodle :p He just looks strange when he's running. Now for his walk, he can get quite "bouncy" and likes to get up there on his toes when he doesn't have shoes on. When he has shoes on he never walks properly in them no matter what kind of shoes he's wearing, he has to walk on the insides of his feet. It looks painful and I must say, FUNNY, but that's what feels most comfortable to him! He has, however, ruined plenty of shoes because of his odd ways of walking... He also looks like a loose noodle walking too LOL.

So onto the computer thing! That only intensified. I can't even go into detail how quickly he picked up on it and the things he learned at such a young age! I think by 5 he was mastering making his own video game levels of the Mario games. He has an obsession with Mario and I swear I didn't teach him or help him at all, he just all the sudden was making video game LEVELS. Up until then he did like to play games on the computer and the nintendo, but once he learned to make his own game pretty much he stopped playing so many games, and turned his attention on that.

He also picked up on taking videos himself and uploading them to his own YouTube account! Yes I had to set that up for him, but WOW, his videos are not something a young child should be able to do! I'm in constant awe at what he is doing...absolute awe.. He now learns how to do pretty much anything he wants to learn to do by watching youtube instructional videos. He learned Sony Vegas Pro (video editing program) in an instant and his editing skills are unbelievable. He is actually even making money with some of his videos and is almost making more than me! I have my own account and numerous videos but my boy somehow is going to beat me to the punch lol

So, he is smart, SMART, but only at what interests him enough to be an obsession.. He has obsessions, and collections of the things he's obsessed with (mario toys, anything mario). He does well in school but just gets by. There isn't anything there to really keep his interest. But he gets by.

The off in his own little world thing is still the same. His teacher will agree with that, he never knows when he is paying attention or not because he's always staring off at something else.. most likely editing a video in his mind or something lol

He only wants to talk about what interests him. You cannot get anything else out of him! huge... This one is pretty bad. He has an enormous problem with communicating, and trying to tell you what is on his mind, and to put it all into words. So he gives up, he doesn't even try most of the time because it is too frustrating. At school he is very quiet, too quiet in fact. We have him in speech therapy to try and help him out in this department.

To the "hates wearing shorts" comment, that goes into the whole subjects of clothes in general. He doesn't and wouldn't ever wear jeans. Everything has to be very loose and comfortable and soft. Now onto SOCKS! This has been a hard one for years. Socks can cause my boy to have such an incredible meltdown it's unbelievable. He wears socks but getting them comfortable on his feet is where the problems are! That toe seam? Gosh I wish that wasn't there!!!! If he feels a lump, IT'S OVER! It's the end of the world. Brace yourself. So yes my boy has many sensitivities to clothes in general, and I have to cut off any tags that are bothering him.

He doesn't like a lot of noise and will cover his ears. He doesn't like bright light either.

He will only eat the same thing every day, hates change on all levels.

Still has major social problems.

Absolutely hates being touched and will sometimes even say "OW" if I accidentally brush into him. Hugs have been non existent for as long as I remember. As a baby and young toddler he was ok with touching and hugs, but that's been gone for years now.

Still can't sleep on his own.

Doesn't ever talk about anything but his interests.

He won't say hi, bye, thank you, sorry etc.

Still likes to mimic and act like others but will do so more secretly. Doesn't really talk in his own language anymore but does have major speech issues in general.

Violence was a major issue, in the home, he would hit, pinch, push and pull and throw things at you during a meltdown. Since I've been talking to him about his/our problems a lot for the past year his meltdowns have decreased and his violent behavior only happens on rare occasions now.

Social issues and making friends

Friendships have always been hard for him and I could tell it would be hard maybe when he was around 2. He wasn't just shy, he actually had no idea how to approach someone and start up a conversation and a possible friendship. He just didn't know HOW. He seemed to fear other kids. When he was maybe 4 his best friend was 8, he liked older or younger kids, he didn't like his own age group. At age 5 when he started school he chose a severely autistic boy to be his best friend. This boy couldn't even talk, he said some words over and over again but that was it. I think my son liked him because even though they were different, they were a lot the same. In grade 1 when he was 6 we moved schools and he had to find a different friend, and I should make it very clear here that my boy is a one on one person, anymore than that and he's out of there, so I think he maybe picks out a kid that also doesn't have any other friends and he chose someone in grade 1 who just loved him. This boy had a very thick accent and it could actually be hard to understand him, i think my son might have liked that too. In grade 2 when he was 7 his friend moved away and so he had to find another friend, this year was probably the hardest for him because he didn't seem to click with anyone. He would tell me he had lots of friends though, but he never had that one "real" friend. In grade 3, now, he is 8 and luckily met someone early in the school year. He saw a young boy, smaller than him, in the park one day wearing a mario costume. You know he's going to be drawn to that kid forever!! And this is actually the first boy that my son has had regular playdates with. It has taken him this long, and it's sad, but I am just glad he has a friend now. He still will not approach anyone, he lets them come to him, but I think in this case he was with his sister and they were both excited mario was at the park they probably both went over to him.

He doesn't do well in a group so if he is playing with his friend and his friend goes and collects other kids to play my boy gets upset. He may not express it in front of everyone but he will start playing around them, on the outside, probably upset his friend isn't playing with just him anymore.

Playdates can be very hard as well because he is so one on one, he just doesn't do well in groups. Even if he is one on one with his friend many other problems can arise. He has problems with understanding when he's rude, or has done something bad, or mean, or upsetting. He also needs everyone to follow his rules or he's out... He needs to be in control of everything. And I notice that the only times he invites his friend over is when he needs help making a video... So it's like he's almost using his friend when you look at it. He just needs him for something, it will benefit him, his video will be better etc. At school he doesn't have his computer so he needs to find other things to do with his friend, but his teacher tells me he is mostly alone at recess and lunch, which is hard to hear..

Every school year he's tried to have one child he can call a friend. He's had a good year for his 3rd grade. He has MARIO! lol. But still that isn't quite a "normal" friendship. He has been brought home numerous times from his friends house, his mother says she has no idea what to do because he is being so rude, isn't listening, saying bad words etc. I put in place a rule after then that he would need a supervisor wherever he is having his playdate.

A story about his struggles with being social - A family moved into the apartment under us and they have two girls roughly the same ages as my kids. After they moved in it's like party time all the time outside, all the kids from the neighborhood come to play and such. When this was first happening my girl was out there with no problems, but my boy would only look out from the living room window. I would throw him the suggestion every now and then to just go out and play because it looked like he wanted to. He said he was fine watching from the window. That went on for a while and then he would open the window and stick his head out, maybe attempting to be a part of the play going on outside without actually being a part of it. He would make noises to get attention but then run away from the window after. One day, though, he DID go outside with them. That's when the awkwardness really starts as he has no idea what to do then. So he walked around behind them and kept his distance. Eventually the kids got to know him and although they're not friends, they are acquaintances at least. He will still, sometimes, go outside when there's a lot of kids and run around with them, but doesn't get too close!

Assessments and beginning the journey to getting help

My son is 8 at the time of writing this, I am 35. I only found out about Asperger's a year and a half ago when a doctor I was seeing kept making comments about how I could not make eye contact, or keep it for long. The more I researched the more I kept running into Autism. I wasn't autistic though, that was ridiculous! But when I ran into Asperger's a huge wave of realization went over me. Everything fit, perfectly. Me? Autism? No way! I did everything in my power to find something else that fit me so perfectly as Asperger's, but nothing did. And Asperger's also fit my son, not just me. I couldn't ignore it.

After trying to figure my son out for 8 years, I had figured myself out in the process. I am self diagnosed but only because I cannot afford to have the assessments done. We live in Canada and a lot of things are free for children up until a certain age, once you reach adulthood your pretty much screwed. At least I can assess my son!

A few years back we did the ADHD tests for my son and he didn't appear to have it. Up until I found Asperger's I could only pick out his problems and attempt to get help for them individually, like for his shyness, his speech, his tantrums etc.. He behaves well at school and is very quiet and will never have meltdowns there, the school only sees a part of him. I actually had a doctor blaming me for his behavior problems. It was very frustrating. I stopped seeking help until I could figure him out, because up until a year and a half ago he confused me to no end and there seemed to be so many things, not just one or two things I could focus on. And for me, that is hard to deal with. Too many things are frustrating and tiresome. I guess you could say I couldn't handle it, or the way the doctors were treating ME as if I did something wrong here.

This year we have finally gotten on the right track. I did a self referral to the children's hospital. I had no clue I could do this, no one told me! Not any doctor or social worker I spoke to about my son... But this is probably the best thing I could have done, and did it myself without any doctor. He was seen by a psychologist and we quickly began assessments, not for autism specifically, but a general assessment. Once these are done he will either get referred to the autism clinic, or not? I hate waiting, but I am absolutely positive I know what he and I have been suffering with our entire lives. I have a completely different outlook on things now. I am more positive.

I am only worried doctors won't be able to diagnose him or diagnose him properly. In any case we are on the right path finally. I couldn't find the path for 8 years!

My goals are to help him with these individual problems like not being able to communicate, and working on his self esteem, and making sure teachers at school know how to teach him properly because he doesn't learn like other kids.

And maybe, just maybe, he will hug me one day.


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