Happy Single Parent day to all the amazing parents who are raising children alone.
Happy Single Parent day to all the amazing parents who are raising children alone.
When your child is diagnosed on the autism spectrum, you instantly enter the greatest battle of your life—the battle for your child’s future. I’ve been fighting that battle for almost 11 years with no one in the trenches with me but my son, Michael. I can’t describe the pressure I’ve felt trying to do everything in my power to ensure the very best for him. It’s been a long road filled with frustrations and triumphs, setbacks and breakthroughs, tears and laughter. Michael turned 14 this month, and as I reflect on how far he’s come on his journey, I’m filled with so much pride. Why then am I still so scared? Why am I still on guard every minute? The answer is that Michael’s life and future are changing. Everything we’ve fought for is coming to fruition; everything we fought for is being realized, and while he’s reveling in the change, I’m the one struggling with it. I’ve spent so long fighting for my son that even when I’ve won the battle I don’t know how to stop fighting.
From the day Michael was diagnosed, I went into action. No diagnosis was going to hold him back. No one was ever going to tell him what he can and cannot do. I scheduled him for two speech therapy sessions, one occupational therapy session, and one physical therapy session a week. Insurance covered a minimal number of sessions, but even when I had to pay for the sessions myself, I continued for three years until the therapists released him due to his progress.
I immediately had Michael evaluated by the county educational services and enrolled him in a preschool for children with special needs. In addition to the weekly therapy sessions, I would work with Michael each day reinforcing what he was learning in preschool and in his private therapy sessions. Within three months of starting preschool, I was informed that Michael would need to go to another school the next year because he had progressed so much in the short time he was there that he was too advanced compared to his classmates; he wasn’t getting enough stimulation. I moved him to the preschool in our hometown, and he continued to progress.
Year after year, IEP meeting after IEP meeting, and teacher conference after teacher conference, I went armed and ready to fight. Michael would get the services he needed to succeed. He would get the individual attention he needed to ensure he understood the classroom material. All this while spending hours each day helping with homework, breaking down assignments into manageable chunks for him to tackle, and teaching him how to study based on his strength of memorizing information. It was grueling at times, some nights ending with both of us in tears, but it was also rewarding when he would come home with an A on an assignment or test that he had worked so hard to earn. It was our life; it was what we were used to it, or at least it was what I was used to.
Fast forward to seventh grade. The year certainly hadn’t started the way I imagined. It was a rough start with math class posing an ongoing struggle, but as the year went on, something changed. Maybe it was puberty, or maybe it was just all of the hard work we had done over the years, but Michael started owning his schoolwork. When asked to be taken out of class to work with the intervention specialists, he declined. He didn’t want to work with them other than in study hall. He didn’t want to leave class; he wanted to stay with all his classmates. He also didn’t want his helicopter mom checking all of his work or helping him with his assignments. At first, I thought it was just Michael being lazy, and I was angry and pushed back, which frustrated Michael. He knew what he needed, and he wanted me to trust him when he said his work was done, trust him when he said his assignment was ready to be handed in, and trust him when he said he was ready for his test. The truth is that I wanted to, but I didn’t know how because I was supposed to be the one fighting for him, but now, he was fighting for himself.
The biggest shock was at his IEP meeting at the end of the year when his teachers indicated Michael would be due for reevaluation at the end of his eighth grade year. They didn’t think Michael would need an IEP for high school and that he most likely could move to a 504 plan, if he needed any type of plan at all. I freaked out when I heard this. Under no circumstances would the school take services away from Michael. I went on the defensive and prepared for a fight. The intervention specialist pointed out that Michael wasn’t truly receiving any special services. In addition to not being pulled from classes at Michael’s request, we had never used any of the accommodations we could have. Michael could request extra time when taking tests, but he never did. Michael could have requested extra time for assignments, but he never did. All of the accommodations Michael could have asked for, he never did, and he didn’t because we had spent so much time working on making him understand how he needed to work. We spent so much time making him understand how to play to his strengths and how to compensate for his weaknesses. In the end, it resulted in Michael performing at grade level side by side with his “typical” peers.
Even his psychiatrist saw the change and suggested there was no need to continue his regular sessions with her. Again, I protested. He starts high school next year. Big changes are coming. She can’t just abandon us on the cusp of this huge life event. What I failed to see in her recommendation was the same thing I failed to see in the recommendation from the IEP committee. No one was trying to take anything from Michael. They just realized that Michael had achieved what I dreamed for him for the past 11 years. He’s being a typical kid his age without help from anyone else.
We are now halfway through eighth grade, and Michael is doing it all himself. He completes his homework and assignments without my help. He asks for help studying only when he feels he’s struggling with the material. He’s completely independent, and his grades are just as good as when I was intervening and hovering. He’s become more social and even went out by himself in the neighborhood for Halloween. He still has all of the quirks that make him who he is, but he also has a maturity forming—a maturity that makes him need me less, and I don’t know how to deal with that.
It took a lot of self-reflection for me to realize that the reason I’m so apprehensive about changes to the way our lives have been (no IEP, no therapy sessions, no marathon homework sessions) is that I don’t know what my role is in this life we are moving forward with. It’s been my job to protect Michael from the cruelty of the world that wouldn’t understand him and his quirks. It’s been my job to fight for him and to prove to the world that he’s more than his diagnosis. It’s been my job to make Michael believe he can do anything. After 11 years, I’ve won those battles; I have this amazingly brilliant, loving young man who has this amazing high school experience in front of him and dreams of life as an animator—a life that has him looking at art schools and technical schools to figure out what option provides the best experience for him.
So where does the fighter fit in now? How do I stand down after so many years of always being on guard? In all honesty, I don’t have an answer to these questions. I know I’m very lucky and that Michael’s experience is one that many parents dream for their children. My experience is one that many parents dream of for themselves. Michael will always be autistic. It will always be a part of him. Because of that, I’ll always be an autism mom, but now, I have to learn how to just be a mom. That may sound weird to most parents, but it’s been hard for me to let go, to step back, and to let Michael take these steps alone. Fighting for him is second nature; it’s instinctive. For the first time since his diagnosis, I have to learn how to fight those instincts.
I fought the fight life presented us. I went into battle for my son, and I won. Now, I have to learn how to trust that victory. I have to learn how to live in the life that comes after the fight, and no one prepares you for that. Don’t get me wrong. It moves me to tears to watch Michael be the man I always wanted him to be. It fills me with so much pride. I think I’m afraid because while Michael starts his new journey I have to figure out my own. I haven’t thought much about what life holds for me outside of being an autism mom. I guess it’s time to find out.
I became an autism advocate on June 19, 2008, when my son, Michael, was diagnosed on the spectrum at three. It’s been a decade, and you would think that with the ever-flowing stream of information available to us in our online culture that people would be more educated about and more understanding of autism. Unfortunately, this is not the case. As a whole, there is still a lot of ignorance and misconception about autistic children, and it infuriates me when I see people treat Michael differently when they learn he is autistic. My son is not broken, and you don’t need to treat him like he is. In fact, there are probably several misconceptions you will have when you hear Michael is autistic, so let me clear all of them up for you. Here is everything you need to understand about my autistic son.
This is one of the most important points I can stress. Just because Michael has a diagnosis of autism doesn’t mean you need to act differently around him or towards him. Do you act differently around people who have been diagnosed with diabetes or heart disease? As far as I’m concerned, his diagnosis is no different. Autism is a part of who he is, but it isn’t all that he is. He’s a typical 13-year-old boy. He has likes and dislikes. For example, he loves animation and all things Pixar. His dream is to work at Pixar someday. Engage with him about Pixar movies or how animation varies when done on a computer versus when it’s draw by hand, and he will talk with you for hours. He’ll even show you the programs he uses to create his own animation. Engage with him about sports, for example, and he’ll be antsy and make it clear he wants to disengage because sports aren’t something Michael gets excited about. Sounds pretty much like every other kid you know, right? That’s because he is like every other kid.
Michael has language processing disorder. Since his brain isn’t always paying attention, there are times that he hears what you are saying, but his brain doesn’t process it right away. Sometimes he needs a bit more time, so give him time to process the question fully. Be warned, however, that because he knows it’s rude to not answer when people ask you questions, he will sometimes answer with standard responses to the most commonly asked questions. So asking him how he likes school this year may result in a response like, “I’m good.” This is because he knows a standard question people ask when they engage with you is, “How are you?,” so he has an answer prepared if he doesn’t quite understand the question. Instead of turning to me with a look on your face like my son is an alien, simply ask your questions again (but not louder since he isn’t deaf and doing so just makes you look ridiculous). Chances are the second time will result in a more appropriate answer. Again, this isn’t an issue all the time. Michael’s brain works like a circuit board with a short. You never know when that short is going to trigger, and most times now that he is older, it happens less frequently. Nonetheless, be considerate.
It is common stereotype that autistic children are incapable of feelings. In some cases, yes, there are children who have a harder time understanding or expressing emotions. Assuming this is the case for all children is wrong. Michael experiences very deep emotions. He’s very sensitive, and his feelings get hurt easily. If I am upset with him about something, he is unable to do anything until we clear the air. He’ll apologize and even insist on a hug to ensure everything is good between us. He gets nervous when he has tests like any other kids his age. He tells me daily that he loves me, and if I’m hurting, he does whatever he can to make me feel better. On one occasion when I was sick in bed with a migraine, he drew me a picture of a flower and hung it up next to my bed to cheer me up. Does this sound like a child incapable of emotion? I know several “typical” adults who aren’t capable of that level of emotional depth. They could learn a lot from Michael.
Michael’s diagnosis came with a plethora of issues he has had to learn to overcome. Let me break them down for you:
When I mention any of these obstacles to people in conversation, they automatically take on a tone of pity, and they start to treat Michael like he’s fragile, dumb, or weird. His diagnosis makes him none of these things.
While these issues have presented challenges that have frustrated Michael, these also contribute to the very best parts of him. The hypotonia made sports difficult for Michael, so instead, he decided to be in band, and has become an amazing drummer. The sensory integration disorder makes Michael especially ticklish, and when he gets going, that laugh could brighten anyone’s day. Because it’s hard to write, Michael prefers to type on the computer, and his word-processing skills put mine to shame. The emotional delay means Michael can be a bit silly, so he’s drawn to sitcoms. This coupled with his hyperlexia that gives him the skill of memorizing anything results in Michael memorizing episodes of his favorite shows and often reciting scenes that he found most entertaining. We have a lot of fun with this.
These are all the little things that make Michael who he is, and I wouldn’t change any part of him and neither would he. Michael knows he is autistic, but that’s just a word to him. He knows that he struggles at things and that he has to work harder at school, but he accepts it and doesn’t dwell on it. Since he doesn’t understand that he is different based on social standards, he is unapologetically who he because that’s all he knows how to be, and this makes me proud. He’s my imperfectly perfect son.
We tell children that they should strive to stand out and be who they are, but when we meet a truly unique child like a spectrum child, we don’t embrace the difference; we emphasize it by freaking out and acting like the child is something other than a child. Our behavior changes and becomes awkward. I often wish I could record people when they interact with Michael and play it back to them so they can see how ridiculous they are being. Having experienced this type of behavior for a decade, I have learned one very important lesson that I have shared with Michael to help him cope with people’s reactions to him, and I will leave you with that lesson as well. Just remember that when you act differently around my son or tell me that you can’t relate to him because he’s autistic, you are saying way more about yourself than you are about him.