I never thought this would happen to me.
When I held my baby girl for the first time and looked deep into her blue eyes, I was filled with love and dreams. I imagined her laughing, dancing at recitals, and wondered what style wedding dress she would want to wear someday. I couldn’t wait for all of the mother-daughter bonding we would share together over our lives. While I know we will probably still experience those things, I never imagined we would be here, three years later, kicked out of multiple daycare centers, isolated from “friends” and “family,” feeling completely and utterly financially and emotionally drained.
It’s been a few months since we received an autism and ADHD diagnosis. Now, as I look back on this journey, I have come up with the five stages of an “A” word diagnosis for a parent.
It started with classic denial, like any major life event. When I began to learn that my daughter was different, I kept questioning it, defending it, making excuses for it. She was tired. She was hangry. She had a long day. Then I started to defend her to myself. But she was walking at 10 months. She spoke in sentences before 2 years old. She uses big words appropriately. She makes eye contact — most of the time. How can she have autism? And ADHD? And SPD? Are they insane with all of these labels? What kind of doctor uses this many labels? They are the one with the “problem,” not me, not my child.
I convinced myself that my daughter could not have autism because she talked! Somehow all of the good memories began to negate the head banging, the meltdowns, the inattentiveness, the jumping off furniture, and her strong will. Our perception of children with conditions like ASD and ADHD are often of a rambunctious, under-disciplined child, climbing the walls due to their excessive hyperactivity, or a nonverbal child sitting on the floor rocking themselves back and forth. No, that was not my beautiful baby, who looked “normal”!
Next comes disbelief. This is different than denial. This is backed by research. This is when we tell ourselves that the environmental factors of life — whether they be food-related, allergies, vaccines, zodiac signs, weather patterns — have impacted this situation. This phase lasts a short while before we start blaming ourselves. We didn’t spend enough time on the floor playing together and doing flashcards; instead, we gave them too much screen time. The television gave my child autism. Can you believe that? It’s a conspiracy!
We find the most obscure yet seemingly fundamental reasons to convince ourselves that this is not our truth. Our “friends” and “family” fuel our fire and remind us that all children have tantrums. All children have bad days. But we forget that not all children have tantrums and bad days almost every day.
Others said things like, they just need more discipline. They need to play sports. Trampolines will cure their hyperactivity. You should take a parenting class. Maybe an organic gluten-free, hormone-free, dairy-free, dye-free diet will undo the damage, and we put ourselves through hell hoping to undo the diagnoses with kale smoothies infused with super fruits and DHA (I can safely say, I tried everything).
Whatever the reasons are, we have moved from denial to disbelief that this is real for our kid. We research how we can undo it and prove it to be some conspiracy related to a non-organic banana slice our kid ate at 3 months old.
Once we run out of reasons that these diagnoses must be false, we begin dissecting. We dissect our children’s symptoms and behaviors to find other possible diagnoses. Because we have the internet, we can play doctor too! Well, first, she is a girl and all these people are saying only boys get these conditions, so maybe she is just a spirited child? Maybe she has some other curable illness that gets confused for autism?
You go over your doctor visits in your mind and question the results. Well, the doctor said that she makes inconsistent eye contact while asking for assistance. Okay, but she still makes eye contact. I don’t make eye contact with everyone all the time. Actually, as an adult, I avoid eye contact with lots of people on purpose — like people at the mall who try to sell me Dead Sea lotions. Do you know how much money I save not making eye contact with those people? That makes me smart! She is just like her momma! She is doing it on purpose!
The doctor explained to me that during a balloon test, our child failed to look at the adult who had the balloon and only followed the balloon. Still, I thought, it couldn’t possibly mean autism. Since when did keeping your eye on the prize become a bad thing? This has to be something else because she does not meet the criteria for this. She talks! She can’t have it. She sleeps! ADHD kids never sleep! Her ADHD brother never slept! How can they have the same thing if they didn’t have the same symptoms? This dissecting stage can go on for a while, until you have run out of things to research and conspiracies to fact-check.
After you deny, try not to believe it, and dissect it, you realize that your child does have a disorder and you begin to accept it. When a character performer who came to our child’s birthday party told us how “annoying” she was and after a few daycare expulsions, we began to see that if we were to fight every person who ever complained about our kid, we would be fighting a lot of people.
So now you are at acceptance and you begin to advocate for your child by getting them evaluated by other specialists, getting them therapy, getting an IEP, a 504 plan, and sometimes medicating them. You basically begin spending a lot of time and money on everything you can find that may help your child. This includes filing FMLA; taking them to endless hours of occupational, behavior, speech, and play therapy; drinking a lot of wine; and researching why medical marijuana isn’t legal for children after reviewing the millions of side effects of proposed medications.
You begin to support your child and look at them with as an individual with needs other than the ones you had in mind. You thought they needed to clean their room and be good at sports, but instead, they need help calming down, help transitioning throughout the day, or time for you to help them stay focused. They may also need you to understand why they can’t succeed at a sport or keep their room tidy.
Sometimes they need a break. Sometimes you need a break. Either way, you learn to bridge this gap between the kid you expected to have and the kid you actually have. This leads to the fifth stage, loneliness. This is when you realize that all you talk about is the research you have done, the therapies you are scheduling, and the progress your child is making, to the point that nobody wants to hear about it anymore.
This also goes hand in hand with your “friends” and “family” who begin to avoid you. Yes, those people you once drank wine with while your children played together no longer invite you over or to activities anymore. Sometimes they will shoot a text and some even like to make adult-only plans to save face with you, but what they are really saying is that your kid is no longer wanted around their kid. Maybe they think these conditions are transmittable through friendship and laughter. So the loneliness begins. Your family struggles to make friends who understand, friends who don’t judge your parenting, and who have kids who understand your kids.
Sadly, for many of us, family members will even tell you that this is not real. That you are an asshole for letting anyone label your child the “A” word. You are classifying them, labeling them, setting them up to fail before preschool! You begin to cut people out of your life whose reactions to your situation are toxic to you, your child, your family, and this road gets lonely. But don’t worry, social media is here to save the day! You then find support groups on Facebook where you can connect with other special needs parents, and it brings you back to life a little, just enough to get through a day without that third round of tears.
Dealing with a diagnosis for your child is hard, it is painful, and it may force you to lose all hope and faith in society. The way people treat you, your child, and the cruel comments both friends and strangers make is possibly the worst part of this parenting journey. If you don’t parent a special needs child, please keep in mind that we have gone through the emotional stages of accepting our children’s diagnoses, and all we want is to raise kind people. What you can do is support us, be kind to our children, and do your best to teach your children about acceptance and inclusion. That is what makes all the difference.