My Kids Have Superpowers

   It is not a disability. It is not a handicap. It is not a “grow out of it,” thing. It is autism. Autism means to me, a different way of feeling and thinking. I have three children. I have a teenage daughter with Aspergers, adhd, and numerological anxiety. I have a son who is eight with hyper sensory processing disorder, add, anxiety, and impulsivity disorder. Lastly, I have a five year old who is neurotypical, but a major drama queen ( I am certain she may grow up to be a Karen, but hopefully not). For those who are not familiar with each of these terms, I will include a very blunt description below:

1. Autism: A quality characteristic in a kiddo’s brain that makes them awesome. No further definition is needed,
2. Aspergers: When a kiddo has absolutely no tact, does not understand sarcasm, and can’t take a hint. Gotta spell everything out and have them repeat it back to you.
3. ADHD: Imagine a chihuahua on cocaine, drinking a surge, and snorting pixie sticks. Now imagine that chihuahua seeing a squirrel every second.
4. Anxiety: Something so common I don’t know why they put it on the diagnosis, but you overthink and worry a lot.
5. Numerological Anxiety: Math will always be a challenge. See a number, freak out. It is comparable with going to a nail salon everyday while all the Asian women are laughing, and you don’t speak a word of the language. 
6. Hyper Sensory Processing Disorder: You hate light, clothes, food, sound, and people touching you, but you somehow try to put up with it everyday.
7. ADD: Remember 3? It is the same just without the drugs and surge.
8. Impulsivity Disorder: I want it, I take it. I wanna do it, it’s done. I don’t want to do it, no way in hell you can make me!
9. Neurotypical: A child who is not autistic. Don’t say normal, unless you want a mom to throat punch you. (just kidding, but maybe not)

     Autism is tough for us, as parents, to live with sometimes, because it is difficult to see the world through our children’s eyes. Now before I dive completely in, I want to say one thing. If you have met one child with autism, you have only met one child with autism. Every child is different, and in this case, I am speaking from MY perspective about MY children. I don’t know your kid, only you do! And in our home, we do not call it special needs, we call it having super powers. I know that in the beginning of my journey (with my teen) it was pretty mild. 

     She was four. Before then she hit all of her milestones and many early. She was functional, but very energetic. She had been in preschool for several months, and one day her teacher requested a meeting. Her teacher talked about how smart and witty she was. She stated that she was very sociable and loved to play. BUT (I hate that word) she had a difficult time following directions, and could not complete tasks on her own without redirection. In my young mom mind, I figured this was normal. I mean jeez louise she is only four! How attentive do you expect a toddler to be when surrounded by toys and other kids? The teacher recommended speaking with our pediatrician about medication. Boom! Right out the door meds were the first solution? I think not woman! 

     I made the appointment, and sat in the room which felt like hours. They gave me brochures for ADHD, autism, anxiety, and other issues that I was not at all prepared for. Finally, the doc came in. He asked a few questions, and checked my daughter over for a minute and said, “She has ADHD.” Was I missing some big label or sign on her forehead? How in the hell could he tell just after a few minutes? He said he was not going to officially diagnose her yet, but gave me a million (maybe 4) numbers, resources, and referrals so she could be examined more fully. From that point on, I made it my mission to find out everything I could about this monster called ADHD. After several months of counseling, they gave her the label.

     Fast forward to her kindergarten year. She is not in any special class, and she does not have an IEP. I still did not know what IEP even was. I get called to the principal’s office. I tote my newborn son, and my exhausted body to the school. I am terrified something happened or possibly she is sick. They tell me she is suspended for the day because she would not listen or sit still. Are you fudging kidding me? All that drama because a five year old won’t listen? Do THEY even have children. I swore it must have been her first day on the job. They then ask me again if maybe she had ADHD. I told them she does, but we had no major issues. They scheduled me an appointment with the school counselor, and I took my daughter home cursing the school mentally the entire ride. 

     The school counselor appointment arrives. I have no fudging idea what I am doing or what to expect. I could tell you a million pinterest ways to help ADHD kids focus. I could tell a number of foods to maybe not eat for ADHD. I could not tell you anything, though, that was 100% effective. As I sit in a tiny plastic chair, gazing at stupid inspirational posters, and looking at a million books on a shelf describing how to raise children, but seeing no photos of kids on her desk, I was skeptical of this woman’s ability to guide me or help my child. I am sorry, but if you do not have kids, don’t give me “advice.” If you don’t have kids with ADHD, just keep your trap shut. After an hour of my child being scrutinized, and being told how I do not know what I am doing (I get it childless Karen, you know “better” than me), she gave me one solid piece of advice. I learned that day what an IEP was, and that I was in control!

     I did not want my child excluded. When I was a kid, we had the “normal”(God I hate that word) classes, and the “special” classes. The kids were separated, and it was not hard  to tell who was in what class. I saw kids get bullied for even the smallest difference, and in this moment, all I could picture was my baby girl getting bullied. Then I’d have to punch a kid, and that would just be a mess. Her current school gave me only one option…… special class or she fails kindergarten. To that, all I said was buh-bye, and we moved. We moved fifteen minutes away all because of one school’s awesome integration curriculum. It paid off! New school year, new school, and new staff members. My first IEP meeting, and I am slightly prepared. After two hours, my world had brightened as the staff explained every assistance, strategy, inclusion, therapy, and detail of how they were going to help my daughter succeed. I walked out of that building feeling as though I was floating. My mind was at ease for the first time in nearly two years, especially knowing my child still did not need medication. Little did I know that after confirming one child’s success, I would be met with a much larger obstacle.

     This is where I believe the phrase, “If you’ve met one, you’ve met one’” blah blah blah came from. My son was born five years after my daughter. When he came into our lives, my daughter was in kindergarten amidst the principal, counselors, and therapies. When he was born, we were in the NICU for a week. He was born on time and everything went smoothly, however, he was hypothermic when he arrived. For a week, he was under a heat lamp and so small for making his due date. He came home shortly after and everything was normal. As he grew, he had many issues with reflux, and he cried so so much! For the most part though, he was very happy. He crawled late, and didn’t speak, but we figured because girl’s develop faster, that was why he was behind unlike his older sister. 

     We kept our pediatrician informed, and it was assured to us that there was no cause to alarm. At eighteen months, he finally walked. Shortly after, he began speaking in single words. When he was two years old, he formed his first sentence,”I said NO mommy!” He ran everywhere! He was so clumsy, but that is normal for someone who just figured out how feet move, right? He was very defiant, which is also normal, right? He did not like wearing clothes. Hell I would prefer to be naked, so normal right? He would sit in a spot for an hour and not move. Figured he just really loved Mickey Mouse Clubhouse, so normal, right? He was so different from his sister, and all other babies I had been raised around. Different does not necessarily mean a problem to me. I was wrong. I was very very wrong.

     Around the age of three, the combativeness turned into fits of rage, hitting, biting, screaming for hours, and simply not wanting to be touched. To add to all of that, he was no longer the baby. Our youngest and LAST (thank God) was born and she , in his eyes, was competition. The worst moment thus far was when both daddy and mommy worked. We had a wonderful daycare worker. All three of our babies spent a few days each week there, and things seemed fine at first. After some time, we got reports of extreme physical violence and our son was the perpetrator. The pediatrician is still, at this point, saying it is just a spoiled behaviour. I felt it was my fault completely. Yes I shower my children with gifts, love, and attention, but I have been told numerous times by many that I am too strict. What was I doing wrong?

     Over the next two years, things were much worse. Everyday was centered on rage, meltdowns, violence, and sensitivities. I love my husband, but I believe it takes longer for the fathers to accept things that cannot be changed. This was his only son, and as sexist as it may sound, that was the greatest gift having a boy to carry on his name. Our daughter’s suffered because most of our attention went to discipline and controlling our son. Yes, I said controlling because at that point, we were determined he would not become a bad seed. We wanted him to be happy, but we had to discipline discipline discipline. Life was worse on our son. He could not control himself, and his life was filled with what we now know as differences. What was worse, was we didn’t even know he felt this way. We thought he was “normal” (that word!), and he just needed more structure and discipline. 

     We were lost. Our son was in pain and distress. My body was in constant pain from being bitten, slapped, hit, kicked, and having anything and everything thrown at me. I am not sure if people realize this, but an autistic child having a meltdown can summon hulk like strength! No joke, no exaggeration. Ask any autistic parent. One particular incident I will never forget. It was a typical day. Fought my son until he cried himself to sleep. My daughter’s were asleep in their room. In the middle of the night, I heard my youngest crying. Like any mom, I got my robe and entered her room, only to hear the crying suddenly stop. I froze when my eyes saw my son covering her nose and mouth while she wriggled. I truly feel awful for this, but judge me how you want. I pushed my son, and grabbed my daughter. Thankfully she was fine. I was torn for a moment. I was so mad at my son for nearly smothering his baby sister, and I was terrified for my girls. I am a mama bear, and I didn’t know which instinct would take over. Worry for my son, or scared for my daughters. When I asked him why he had done what he did, he simply replied,”I know you were sleepy, and I didn’t want her to wake you up.” 

     When he started kindergarten, we were terrified. We were so afraid that he would hurt the staff, and worse, another child! Everyday he screamed going into school. He refused to do anything, including move from the floor. After his sixth birthday, the behavioural specialist at his school called us in. Keep in mind, my husband is now in the military. He joined after our son’s third birthday. For three years he was only home for a few months. I was alone, and clueless. There I am, once again, in an office surrounded by Snoopy pictures on motivation, books on Autism and special needs, and a desk with no pictures. 

     After three hours of crying, wailing like a banshee, and spilling everything about the past three years, she helped lay out a plan that became my greatest asset. She explained that my son was not just a “bad” child, as his pediatrician described. He did not need to be on the six medications they tried prescribing. He did not hate me (which I was sure of). He was autistic. Not only that, my daughter did not just have ADHD. I felt horrible. My daughter! My daughter had been a victim in this. I was so content on believing I did everything I needed to for her, I had nothing else to do. I revived her IEP every year and kept steady contact with her teachers. What else could there be? By now my daughter had been on medication since age seven, and was stable and doing much better, for the most part, in school. 

     I judged everything by grades. She did not have any bad behaviours, had okay grades, and her teacher loved her. The problem was, she had no friends. She was constantly called names and ostracized because she was energetic. She always spoke her mind so it was a deterrent when a little girl would ask if she liked something, and my daughter replied “no.” In my mind, kids can just be assholes. There was nothing wrong with my daughter saying what she meant. I started from scratch with my daughter, and my son’s process started beside her. First it was convincing the pediatrician that they both needed a referral for behavioural health (which meant he had to admit he was wrong). Then it was a hundred calls to our insurance company to make sure the referral went through. Then it was scheduling the referral, and waiting on a long list. Then it was getting behavioural health to give us a referral for child psychiatry. Then it was calling insurance, getting the referral through, and so on. That was followed with driving two hours for one child’s psychiatrist and forty- five minutes for the other child’s psychiatrist (for some reason that is how our insurance worked…. dumbasses). Then it was the first trial medicine for my son, and a revised dosage for my daughter. After several months, both of my children were sent to two different analysts for an official diagnosis (again dumbass insurance, but hey that’s the military). 

     After three or four visits for each, we had official documents describing what was “wrong” with my children. I googled until my fingers bled (figuratively speaking). I did so much research, read a number of books and publications, went to every parent support group I could find, and used the hell out of Pinterest for every trick or tip. I not only had one child on the spectrum, I now had two. One book I read stood out the most. It described the whole process as comparable to the five stages of grief. Hear me out because it will make sense. 

1. Denial- My child is not autistic. He has behaviour issues, yes. He has a temper, who doesn’t? He is just a kid and will grow out of it. These doctors do not know my child. They are quacks.
2. Anger- How could this happen to my child? It is all my fault. I ate something or moved too much when I was pregnant. I am a horrible mom.
3. Bargaining- Maybe he is a little, but not everything they said. Maybe it is just ADD and they are making the rest up. If he has the right meds, maybe he won’t be autistic anymore.
4. Depression- My child will never be “normal.” He will never get married, live alone, and die miserable. He will never be happy. Everyone will be mean or criticize him.
5. Acceptance- Okay, I gotta think clearly. I have to educate myself. I have to move forward. I will take this diagnosis, and devote myself, as I should, to steering him towards happiness. He is stronger than I am giving him credit for. I love him, and I am the greatest advocate for my children. I got this.

     Growing up, when I thought about autism, I thought it was something physical. I remembered the children in school who had to have aids, and had physical signs of impairment. In my generation, there was no such thing as autism. There were only dumb kids or bad kids. This was my mindset. It is difficult to let go of your nurturing. It is difficult to change your views, at least, until it is your child. I hate the “R” word. I can’t even bring myself to type it. As a child though, this was the word I always heard describing special needs people. I did not see that in my children. I can’t tell you how many times someone has said, “Well they don’t look autistic,” or “They look perfectly fine, maybe it is not autism.” It is not always visible, and that is what is so worrisome.

     If you see a child in the store kicking or hitting his mother, and he is physically impaired, people do not usually question it. I fretted going anywhere with my son because he was sure to have a meltdown. He was most certainly going to touch something or hear a noise that would set him off. His noise cancelling headphones went everywhere with us. Fidget spinners became a saviour as well! For a short while, he even wore gloves because he did not want to feel anything. Still it was inevitable that too long away from home, would end in me being covered in bruises, or someone calling child services because I could not “control” my son. In some ways, nothing changed. It was still rage fueled meltdowns (even at home), fighting with his sisters, and long nights because I could not until he did. After the incident with my youngest I did not sleep well for a long time. School had gotten better, but I still had to have help escorting him inside.

     After two years, we had finally gotten a schedule. Routine was my son’s greatest tool. We had a system for when daddy was deployed, and when daddy was home. I returned to school as well with some confidence that the after school program was equipped for his different needs. Don’t get me wrong. It was not all daisies and rainbows. No matter how good a plan is or how regular a schedule is, autism can sneak up and give you another hurdle. I was mostly grateful that my son was at least eating! I made chicken nuggets, mac and cheese, and broccoli at least three nights a week! We were military, however, and the big army has a great skill of completely turning your life upside down at any given moment. And just like that, I had to think fast. We were moving, and everything that was familiar to my decently adjusted children was about to change. 

     The EFMP program is a great asset. It is short for the exceptional family member program. Many have twisted opinions about the program all for one reason. If you are enrolled in the program, you can only PCS (military move) to places that offer the services needed for the enrolled member. In my opinion, it is selfish to not give your children every advantage possible just so you can be stationed in Hawaii or wherever. That is just me. I filed paper after paper. Copies and stacks of every document from doctor’s, schools, specialists, daycares, and anything else I felt was needed. No joke, my two children on the spectrum each have binders that I carried everywhere. Anytime someone requested information about my kiddos history, I proudly handed them thick binders full of everything they could possibly need! I recommend this practice highly!

     With my power of attorney in hand (those are like gold in the military), I called everyone that was needed. I visited offices that have never even seen a spouse. I emailed officers in charge of everything I needed accomplished. I was well known, by now, throughout my husband’s command. I had one goal in mind, to enroll our kids and move to the best possible post that would suit all their needs. Months later, we were on our way to Georgia. Three days, three kids, my father, my husband, two hamsters, a dog, and a cat in tow, we finally arrived in the middle of the night. It felt like an eternity. I quickly moved first thing in the morning. I completed housing for the move in. I finished enrollment for my kids in their new schools (toting my binders and making them read every page), and managed to solidify the arrival of our household goods. 

     I was awesome. I felt like everything was going great, until my son’s first day at school. Everyday for three weeks, my son was either sent home or I had to come and just move him to his next class. The morning drop offs were worse than ever. He would scream and bite. I had to drag him out of the vehicle, and he was strong. I could not keep him home. He was in the first grade, and I was constantly threatened with truancy if I did. I was woman enough to admit I was not cut out for homeschooling.He would have only suffered more due to my shortcomings. I fought to change his 504 to an IEP. I fought the school on his aid items and support. I demanded my plan be followed. I was his only advocate, and I was not backing down. It took two months, over twenty phone calls, withdrawing my son from school, and the threat of an attorney to speak with the superintendent. Waiting in the parking lot was frowned upon. I don’t recommend it, but I was desperate. Judge me, I don’t care. I finally found a school with an amazing aid, an amazing teacher, and a super supportive staff! They even created a form for his transfer. The Dodea (military school system) apparently had not done that yet here. Because of the transfer, as well, I got him bumped up on the appointment list for the most wonderful child psychiatrist. My son is now his only child patient. Add on his amazing BCBA (that’s a behavioural specialist for occupational therapy or ABA therapy). 

      After eight months of ABA therapy, med reviews, and building a routine, he is the happiest little boy! He is in his second year at his new school. Even throughout covid, virtual school, and schedule changes, he has had a great day everyday with school. I began writing this after his return home yesterday. Everyday I pick him up , along with my youngest, and ask him about his day. He has a thousand things to say! At home, he is thriving with his medication and schedule. He now loves boy scouts, has a million friends (I am so jealous of his social life), is a genius in math, and is so independent. My daughter is now in middle school. She is confident. She is in the thralls of puberty (shoot me now). She has so many friends I can never remember their names. She loves BSA, and is starting gymnastics. She is so beautiful and will someday be a singer I am sure of it. We still suffer some in math, but she is getting better everyday. Because of my children’s superpowers, my son can solve any math problem and helps his teen sister with her math, and my daughter can memorize an entire musical in one night. These are only a couple of their super powers of course.

     Believe it or not, this was just a summary of the past eight years. I would probably reach book length if I gave every detail. Being a “puzzle” mom is a big job, and as a mom, you are your child’s greatest advocate! The journey of the spectrum is long, and until we leave our children behind on this earth, it will never end. I am kissed and hugged by my children. I am loved by my children. All three of them are my world. I do believe that through the heartache, tears, bruises, and fights, that I am the most blessed mother on Earth. My kids are powerful, and not because they are special needs. My kids are superheroes!