Parenting through an Autism Diagnosis
“I’m not kidding, please don’t lick my windows, you know I hate that!”
“No, I do not think it’s nice to wish people could be sent to Mars for being mean!”
“What do you mean you’re only going to school today if I tell your teacher she has to speak to you in Italian? You don’t even speak Italian!”
These are a few examples of things that have come out of my mouth since becoming a mother, that I could never have imagined saying. Let me tell you something else I never thought I would say: “I have a child who has Autism.”
Early Years Before My Son’s Autism Diagnosis
When I gave birth to my son Jack two months early, I was terrified of possible health complications. You can’t imagine my overwhelming relief as I looked at him the first time and saw that he had 10 fingers and toes, that he was breathing on his own, and appeared to be a “normal,” healthy baby boy. (Normal is a word I have developed a love/hate relationship with over the years. I mean, who is really normal, anyway?)
The first few weeks spent in the N.I.C.U., then finally bringing Jack home, were such a blur of activity and stress that I’ve tried to block them out. I guess at first I thought Jack was just fussy because he was so little, and born so early. Then I thought maybe he had colic. Then I thought maybe something was wrong with him.
Then I thought maybe I was just a really bad mom.
Baby Number Two
I became pregnant unexpectedly five months later (don’t tell my daughter). I stopped thinking about anything and went straight into survival mode. I am one of the lucky women who gets something called hyperemesis gravidarum when I’m pregnant. It is a condition characterized by severe nausea, vomiting, weight loss, and electrolyte disturbances.
During both of my pregnancies, I was hospitalized with an IV feeding tube, went into pre-term labor around 17 weeks, then had to be on medications and bed rest to remain pregnant. My daughter was born 3 months early and we were back in the N.I.C.U., only this time we also had a difficult 13-month-old baby at home who needed to be cared for. Let’s just say it was a very hard time for our family.
Signs of Autism
This brings me to the point in my story where Jack is a little over a year. He was so cute and so busy! He was always getting into something. He climbed on everything and was very strong. He never held still and had no interest in baby toys—and from the time he was nine months old, he loved little matchbox cars.
I thought it was cute and so clever that he would line up all of his cars into rows! Little did I know that it’s an Autism marker. He screamed all the time: happy screams, mad screams, excited screams, tired screams, and every other kind of scream you can imagine.
He was hard to manage and oftentimes impossible to soothe. Once he got mad, it took a very long time to calm him back down.
I know that all babies have moments of irritability; that every 18-month-old is busy and gets into trouble, or can be difficult to soothe from time to time. But this was different. Something just felt off, and I didn’t know how to go about fixing it.
I talked to our pediatrician, who said that Jack was just “spirited”. I joined mommy groups for support, suggestions, and sanity. I bought books, took parenting classes, joined online parenting forums, and enrolled my child into every mommy-tot class I could find. I was determined to figure out how to be a good mom, even if it killed me.
It was during one of the many activities I had enrolled in that I started to see that Jack was a lot more “challenging” than his peers. I was sitting in story time with another mommy who had two kids that were the exact same age as mine.
This is how her situation looked:
She was sitting with her new baby in her arms and her busy toddler was listening to the story and eating a snack. Her toddler was squirming, had tossed a few pieces of food and wasn’t being perfect, but was still very much under control.
This is how mine looked:
My new baby is in her baby car-seat carrier looking around as happy as can be. I’m chasing my toddler around who is yelling and has pulled open a drawer and found a plastic knife and is trying to pry open a locked cabinet. I’m so embarrassed that when I finally catch my monster child, I pick up the car seat and struggle to carry both out of the library with my toddler kicking and screaming the whole time. I can only imagine what a sight I must have been.
The Tipping Point
From there, sadly, the story just gets worse. Jack was nearly impossible at play dates with other babies because he was rough and broke people’s stuff all the time. Jack was very naughty at the store. Going out for dinner wasn’t enjoyable and neither was eating at someone else’s home because it was hard to entertain him. I was beginning to wonder if we shouldn’t just stay at home, where he was contained, safe, and content.
I was still set on becoming a good mom, so I didn’t give up. Our next stop was preschool. He was kicked out of a few programs before we found one that was very active. One of his teachers at the new preschool suggested that I have Jack seen by a pediatric psychologist and checked for ADHD. I was hesitant, but went ahead and took him in, just to rule it out.
The Autism Diagnosis
The diagnostic process of a good doctor is very entailed. It includes home visits; school visits; office visits; several questionnaires to be completed by parents, friends and family; and reviewing every piece of medical background. It was a long and expensive experience, and the diagnosis itself was very complicated.
When I was told my son has Autism, I had mixed feelings. I was relieved to have some new resources and tools to parent with, and hopeful that I would have a better idea of how to meet his needs. It also meant that maybe I wasn’t the world’s worst mother because there were more pieces to the puzzle that I hadn’t had, and I’d finally be able to put it all together.
The flip side of the new diagnosis was obvious: no parent ever wants to hear that there’s something wrong with her child. It’s hard and it hurts. You start to worry about all the ways that it’s going to impact your child’s life, and how it could keep them from reaching the dreams and hopes you had for them.
An unexpected challenge was finding out that a pediatric neuropsychological evaluation is just a tiny still shot for the time frame that it’s done in. Meaning that your child’s diagnosis can change multiple times. The evaluation process happens every three years. and can be different each time. And each time it’s like ripping a new band-aide off an old wound.
Into the Autism Closet
Additionally, figuring out what to tell others was incredibly hard. You may have a hard time knowing what to say when someone tells you unexpected or bad news, but imagine being the one who has the news and doesn’t know how to tell it. It’s such an internal dilemma. You want to protect your child. and only share good things about them. But, you also need to help your child be understood by others around him.
It was hard to know if giving him privacy and not having other people label him and treat him differently was best for him. Or, if it was better to just put it out in the open so that everyone around him could understand when he did something odd or seemed to be a really naughty child. Not as an excuse, mind you, but a reason. I was very torn.
I guess, for a while, I made my decision by not making a decision. I was busy trying to understand all of the new information I had. I was getting to know a physical therapist who helped with Jack’s severe sensory issues, learning about nutrition and supplements, taking him to play therapy, and doing decompression therapy at home. and still needing to take care of my other child.
I didn’t have time to sit around and think about how to tell other people our news. Like all things that just sort of happen, I guess it just sort of happened that I didn’t ever really talk about what was going on with Jack. And, after enough time had gone by, it was hard to change the status quo.
The Autism Spectrum
I didn’t know how to tell someone something that wasn’t often talked about. Jack looks and seems very “normal,” until you spend a lot of time with him, or see him on an “off” day. But, even then, you’d probably just think that he was a pain in the butt.
Autism falls on a spectrum and, because of that, if you’ve met a child with Autism and you think you know all about it now, you’re wrong. All it means is that you know one child with Autism. It’s completely different for each child. Jack’s diagnosis is what’s called “high functioning Autism”. Because his problems weren’t obvious or easy to point out, it sort of gave me the option of whether or not we wanted to share the information we had.
It might have started out that I thought Jack would outgrow some of his problems, and so other people wouldn’t need to know. Maybe I was trying to protect him. Maybe I just couldn’t say it out loud, because it made it more real and that hurt too much. I’m not entirely sure why or how Jack’s diagnosis secret got started, but eventually I realized that it wasn’t the right move for our son.
Situations can and do change, and I started to notice that our situation had changed. As Jack got older, it made things harder for him. When all the kids were little, it was developmentally appropriate to engage in parallel play. At age six, it was not. It was common for a three-year-old to throw a tantrum, but not a seven-year-old.
He had the same trouble with not making eye contact, breaking toys, wetting his pants, not sleeping through the night, wandering off, getting lost, and so on. As his peers began outgrowing difficult behaviors, it became much more apparent that Jack wasn’t going to “outgrow” his Autism. Not the way a child outgrows sucking their thumb.
I realized that the”gap” between Jack and his peers was only going to get bigger as they got older. I was afraid that if we didn’t start making people aware that he is going to need help, that once he did, there wouldn’t be anyone around to help.
I also had to watch people judge him unfairly. If you don’t know that a child is different, how can you understand them? If you don’t understand Autism, how can you be tolerant of it? I couldn’t be upset at others for not being fair to Jack, especially if I hadn’t been fair by not giving them the information they needed to do so.
It’s hard to see another child dislike your child, but let me tell you: its even harder to watch your child be disliked for something he can’t change. I could see how many birthday parties and play dates other kids were invited to and how few Jack was included in. I have watched as a child who initially liked Jack and then, upon spending more time with him, became much less enthusiastic. It made me sad for him and anxious about what that was going to do to his self-confidence. I hoped that maybe if other parents understood Jack better, they might encourage their children to extend a little extra patience with some of his odd habits.
I decided to change what I was doing when, with absolute horror, I realized the message I was inadvertently sending Jack. I never wanted him to feel like he had anything to be ashamed of by having an Autism diagnosis. I would never forgive myself if he felt like we kept his diagnosis private because we were embarrassed by him. If we didn’t set the example of talking about it openly and honestly, how would he ever feel comfortable doing so? Self-love and authenticity isn’t something I can give my kids, it is something I have to teach and model for them.
I guess I’ll end this by saying: Hello, my name is Kelli. I have a wonderful, smart, hilarious, adorable, athletic, sweet son, who happens to have Autism. A son who I wouldn’t ever want to change, even when he is insisting that we only speak to him in Italian!