It was when Hayden said his first word that I knew there was something that set him apart from other babies. We were at a restaurant, and Hayden sat straight up. He looked at his father and me and yelled “CLAP!” and began clapping. I thought, “Wow, my 8 month old is a genius!” He had never really babbled or anything; he just said words. After clap, came bird, daddy (not dada), and car. Soon after Hayden began to talk, he was like a sponge soaking up information and spitting it out every time I turned around.
A couple of months after his first word, I knew something was kind of “off” with him.
I’d constantly have to repeat his name to get him to turn towards me, like he was always distracted. I’d yell, “Hayden, Hayden, Hayden,” and finally after 4 tries he’d turn. Getting him to look straight at a camera was harder then anything on the planet. He could sense when I was about to pull it out, and he’d run, or look the other way. When I asked his pediatrician if I should get him tested, he dismissed me. At almost every well visit after that, I brought up something new Hayden had done that really wasn’t sitting well with me. Like he’d go into convulsions from being so scared of his talking Tigger. He was more then “high maintenance;” he just couldn’t be made happy. It was like he had anxiety or something. Hayden never ever slept through the night, and napping, well, you can forget about it. When he woke up at night, it would be in a blood curdling scream; imagine how fun it was to be woken to that 3 and 4 times a night. Every time I brought up testing, I was told there was nothing wrong with him, and it’s probably just a phase. It didn’t help my “parental paranoia” when the doctor explained Hayden would start saying 2 syllable words at his 18 month well visit. Hayden pointed to a picture above him and said “ELEPHANT!” The doctor looked at me like “see nothing’s wrong,” and I thought “great, thanks Hayden.” So, I just went on like nothing was wrong.
We enrolled Hayden at St. Louis King of France the summer of 2011 when he was 2. I quickly began to notice Hayden was drawn to his teachers more then the other students. I’d come in at dismissal, and he’d be far away with one of them, while the other teacher would be with the group. Hayden knew his ABC’s, numbers, colors, and was even speaking Spanish at home, so I figured he was just bored. One of the teachers pulled me aside halfway through the year and suggested we should get Hayden tested, but for what? He didn’t really exhibit ADHD traits; he could focus on a topic that interested him, and he was absorbing the information he needed. The doctor still said nothing was wrong, so what in the world should I do? I was so freaking frustrated!
Hayden finished the school year, and at his PK2 graduation he acted a total fool.
He screamed the entire time the other kids were singing the songs they had learned. The other kids were so excited. They were ready for big school and posing for pictures, while my son was running around on and off the stage. I was mortified! Again, I was told these things could just be a phase. He’s only 2, and he would grow out of it.
We enrolled Hayden at St. Pius X for PK3 the fall of 2012. The first full day I received a call from the principal saying Hayden was uncontrollable. He had gone to the bathroom, came out with his pants and underwear around his ankles, and unrolled all the toilet paper to the floor. He wouldn’t participate in circle time and wouldn’t lay down for nap, so they brought him to the office to be sent home. The second day, I received another call to pick him up. This time, he had stood on a chair in the cafeteria, and yelled out, “Hey Mrs. Fullam!” to the principal, was unruly, and refused to take a nap. Mrs. Fullam explained to me that we needed to get him tested and that Hayden could not return to school there. More then frustrated, I kept Hayden out of school that year. I kept telling myself, “3 year olds don’t need to be in school anyway.”
That year, I began to really notice that things were different.
Hayden’s nanny would tell me that she was noticing Hayden played in a strange manner with the other kids. He’d get 2 inches away from their face and scream what he was trying to say. He also wouldn’t really play with toys; he’d just line them up and repeat their names. I was also noticing strange habits he was picking up, like he’d only sleep with a silk pillow and stroke it. Hayden would yell, cover his ears, and have a meltdown any time he heard a train, vacuum, or fire alarm. I’d have a fight if I wanted to dunk his head to wash it, he’d pee in his toy box, and he’d poop on the rug and paint with it, even though he would freak out if he ever got dirty. He was also very attached to his iPad. He played the educational apps (even reading 3 letter words in the Dora rhyming game), but he always turned to YouTube and obsessively listened to toy descriptions from toy collectors. He would become so engulfed in what he was listening to that he forgot to eat, and probably wouldn’t sleep, if I didn’t take it away. He would also look out our condo window to the parking lot and name cars. “Look mom, Mr. Sean has a Porsche, and Mr. Ron has one too, but it’s an SUV. Look it’s a Jaguar, and we have an Infinity! Mom, where’s your white Mercedes?” I had that thing a year ago, and I didn’t even know Porsche made a SUV.
In the summer of 2013, we enrolled him in camp, again at St. Louis King of France, and it was rough. He refused to stay with the group, was deathly afraid of the pool, and would dart off from line. Ms. Beth was his counselor that summer. Everyday, she’d report something new, whether it was his refusal to sit next to a girl because she ate strawberries, or him pulling the fire alarm (yeah, that was a fun afternoon). The way she handled Hayden was different from any other person I’d met. She helped me talk with the head of lower school and suggested the psychologist I should use to evaluate Hayden. When we had the evaluation done, the doctor said he had high sensory “issues” and scored a 107 on the Asperger’s Scale, which is high/probable. With that information, Ms. Beth suggested we hold Hayden back to PK3, in her class that fall, and she would work with him.
I’m constantly doing my research on Asperger’s.
Hayden hits almost every description to a T: the high sensory problems, the lack of coordination, the high intelligence, and the poor social skills. He worries about the most horrible things like, “Mom, are you sure you’re going to get me after school? Promise me you won’t forget me.” “Mom, you really love me right?” “Mom, Tommy doesn’t like me and he doesn’t ever want to be my friend.” I constantly have to reassure him that everything will be ok. Any change in his routine is a guarantee for a meltdown. For example, if his grandparents visit on a school night, I can bet I’ll be getting a note the next day. The triggers are the major problem. Once in PK3, he told his teacher if she didn’t leave him alone at nap, he’d punch her in the face, and he did. When I came to pick him up, he was clawing the walls of the assistant principal’s office like an animal. At an emergency session, the psychologist explained something must have set off his behavior. When we’d take him to Occupational Therapy, he’d kick and scream to not go. He doesn’t know how to properly express that there might be a smell, or something he’s seen that he doesn’t like, so we don’t go anymore. It’s not worth the battle for us.
Hayden is one of the most loving children you will ever meet.
He really does have a heart of gold. He is honest to a fault, and even tells on himself when he’s done wrong (I guess he thinks that will lessen the punishment). He doesn’t know it yet, but he has the most brilliant sense of humor. He never meets a stranger and lights up a room the minute he walks in. He’s a true character,
Hayden is currently at St Louis King of France and is in PK4 with Ms. Beth. I don’t know what I would have done without her and that school. The entire faculty seems to know how to handle Hayden better then I do sometimes. His teacher knows how to calm him down when something triggers him, and trust me when I say that by now, she’s seen her fair share of meltdowns. She tells me she knows certain things that set him off, like not to get to close to him after she has had her morning cup of coffee. I know to make sure Hayden has had plenty of rest and stays on a strict routine to avoid meltdowns.
It’s a day to day challenge with Hayden; what worked on some days to keep him calm might not work on others. A family friend, that runs the special ed program at Grace King said, “It just takes a little creativity to open that locked door, and once you’ve opened it, keep repeating it.” I’m much more at peace knowing that what I thought was “off” about my baby isn’t really all that off. One in 88 children are said to be diagnosed with Asperger’s, which is an Autism Spectrum Disorder. I pray what sets Hayden apart with Asperger’s doesn’t make him a target for bullies. Children can be so mean when they notice another child doesn’t fit into what they have been taught to be “normal.” I hope that by sharing my story, the parents reading this can teach their children to celebrate what makes us all different. I also hope to help the parents out there that see that unique quality in their child that might need further investigation but don’t know what to do. Some may think Hayden might be different, or even weird (I call it quirky), but that’s ok. It doesn’t mean he isn’t completely perfect to me, just the way God made him.
About Brynn Srahan
Brynn Strahan has lived in New Orleans since she was 4. She went to St Pius X, Cabrini High School and UNO. She married her husband Troy in 2008, and he owns two local companies Associated Building Services and LA Design and Build. They have a son Hayden, born in July of 2009 who was diagnosed with Asperger’s in 2013 and a daughter Parker, born in November 2013 who diagnosed with congenital glaucoma at birth. When her two little munchkins aren’t keeping her busy, she’s running around for her husband as his unofficial personal assistant. They currently call Lakeview home.
My son was a little different. He had tantrums on planes and at doctors offices. I thought it was a phase. He had tantrums when we left him with the sitter…but only while we were still there, once we were gone he was fine. He went to a cooperative preschool, so it was all play based and he seemed ok (at least to me…when I was working there).
The first day of kindergarten, his kinder teacher greeted me at the end of the day with “terrible, just terrible”. The following few weeks were traumatic to say the least. I was hearing all the time how unbehaved he was and how the teacher “couldn’t deal with him.”. I asked for a parent teacher conference and was greeted with not only the teacher, but autism coordinators, district leads, etc. I was stunned at this meeting that they were telling me my son was autistic. I didn’t see it. How could this talking, communicative five year old be autistic? I didn’t understand high functioning autism. His pediatrician said he was fine. I knew my son had a hearing difficulty that I thought would go away. I switched his classes to a different teacher who seemed to be able to handle him and never said “he’s autistic” to me. In first grade, we had him evaluated by a private therapist who said she thought he was fine. The first grade teacher kept telling me “I think you are wrong”. I lost friends over this.
His second grade teacher, who saved me from pulling my son from this school, was a very sweet experienced teacher. She told me again, “he needs help” but didn’t bring up the autism. I decided to start spying on my son at recess. It was there that I realized my son wasn’t talking to anyone, not playing, just hiding or sitting in the middle of the playground by himself.
I started doing research, and realized that my son fit the “Aspergers” definition very well. I had him re-evaluated both by school and a private psychologist who diagnosed him as having Aspergers/high functioning autism. He is in fifth grade now, he has a daily aide who helps him with school work. The school hasn’t done much as far as social skills for him. I hope that when he gets to middle school next year he has a good program. We’ve put him in bowling as a means to social skills. It’s slow going at this point as he is still learning the game a bit.
We’ve learned alot in the last few years. Despite losing some friends, lots of issues with school, etc. We will get by and continue to make sure that our son can grow to be successful in life.
I put my son in bowling, too – there was a great parent-child league here when he was about the same age as your 5th grader. It was good time for us to be together, but also it exposed him to sound/light/chaos … one afternoon they switched on the “Midnight Bowling” neon/black lights. It was very disorienting, but he liked bowling so he was able to kind of power through the sensory stress and deal with it. He did need some decompression time afterward, though.
Just continue to love him, and everything will work out! When he was little, our 14-year-old hated noise and would cover his ears in church during the music (which sometimes was a bit loud, but he also made sure EVERYBODY saw him). We had to unsew the tags in his shirts because they rubbed his neck — and cutting them out didn’t work. “Look into my eyes when we talk,” became a catch phrase. The right school, small and targeted, gave him the socialization he needed among kids more like him, and explaining his situation to the Sunday School teachers and children provided him advocates who made sure he was included. One thing I would change is that he didn’t start public school until the 6th grade, because he had really outgrown his school with mostly severely autistic kids. His Mom was being a bit overprotective, but rightly so perhaps after a disastrous attempt at public school kindergarten. He has blossomed into a great teenager who can still get obsessed over that one thing, but he is smart and kind and loving and honest and a champion of the underdog in any situation. We are blessed to be his parents!!
Thank you! Your words were exactly what I needed tonight as I cuddle my 12-year-old wonky blessing after a terrible, horrible, no good, very bad day.