Ok, get ready, because I’m gonna say the “A” word…Autism.
I don’t know why society still expects us to be hush-hush when it comes to special needs. If you haven’t met my children, there is nothing hush-hush about them; they are all quite loud and obnoxious at times. So why should I be hush-hush about anything about them?
For those of you who have not been around autism, I’m sure just reading about it makes you nervous and makes you feel awkward because you don’t know what to say or how to respond. Don’t worry about it, there is nothing you can say or ask that an autism parent hasn’t been asked before. This would be a good time to ask any questions you may have. For those of you who deal with autism on a daily basis, well grab some tissues because this might hit a little too hard at home.
When our oldest was around 3, although he said a few words, he wasn’t nearly developed in his speech like he should have been. Combined with his constant tantrums, his need to head butt everything, and his obsessive fixation on trains, I decided to call his doctor. I had the gut feeling that something was “wrong” with my sweet little boy. Well all the doctor said was that he seems fine and is just going through a phase, and that his speech will catch on soon enough. That was enough for me. I told myself, “see you were paranoid for nothing,” and pushed the thought to the back of my head. Sure enough his speech caught on, and although he was definitely the “weird” kid that had tantrums, we just went on pretending everything was ok.
Fast forward to pre-school—or the first time he was really around other kids his age on a daily basis. Although he still enjoys trains, his new obsession was dinosaurs and sharks. When I say “obsession,” I am using it loosely. This kid could teach an entire class on dinosaurs. He would call you out if you pronounced it wrong. He knew which Dino’s were related, which were carnivores, and which were herbivores. Watching him try to make friends was heartbreaking. Every conversation HAD to be about dinosaurs and if it wasn’t, then watch out for the prehistoric tantrum. In pre-school we noticed an increase in hitting when he was upset or overstimulated. The eye contact during a conversation was horrendous. Our sweet “weird” kid was struggling. Nobody wanted to play with him, there were meltdowns every time we did anything outside of his routine, and taking him anywhere was nerve-racking.
I was out of steam and I was losing my cool more than I’d like to admit.
Every time I had to repeat the same conversation with him, I felt the urge to run and hide. I was failing as a mother, and there was nothing I could do to stop it. Finally I decided it was time to seek help again. This time his pediatrician made a referral to a psychologist. We met with the psychologist. For an hour he played with Ethan (who acted like his regular self), asked us questions, and wrote in his top secret notebook. After an hour he handed us papers to take to his teacher, as well as papers to fill out ourselves, and told him to bring him back for a second appointment.
That hour drive to his second appointment, was the most stressful hour drive I’d had in a long time. The entire time horrible thoughts were running through my head. What did we do to deserve this? How could I fail my child this way? Why can’t he just be like the other kids? What if he never gets better? How will the world treat my sweet baby boy? Finally, after what seemed like a century in the waiting room, the psychologist called us back to his office. Ethan, of course, ran right to the dinosaur toys and started playing Jurassic Park. The Dr. sat us down, cleared his throat and said what I had been dreading. “Based on my observations, combined with the outcome of the quiestionares, it would seem that Ethan has Asperger Syndrome or what is now called Level 1 in the autism spectrum, as well as ADHD.”
In that short minute, our entire lives changed. We were now a special needs family. We were now lugging around the word “Autism.” Whenever we said the word those few days after diagnosis, it felt like a heavy weight rolling off our tongues. My mom kept asking me how I feel, and all I could say was numb. I felt numb, I was scared to be upset, because knew that if I let out the smallest tear, I wouldn’t be able to stop it.
As parents, we have hopes and dreams for our children. I knew now that some of those dreams I had for him would not be able to happen without extensive work. I knew now that life was going to be harder for him than for most, and the heartbreak I felt when I looked at this blue-eyed child, was overwhelming. I decided that instead of crying, I was going to embrace it. I was going to do everything in my power to make sure he had every opportunity in life as every other child.
I became an Autism Mom and I was proud of it.
A year and a half has passed since Ethan official diagnosis. He has started various therapies if his own, and we accept that each day could be completely different than the day before. I had even become an ABA Therapist out of my desire to better help my son. We were settling into a groove. That is until our third child was around 22 months.
Piper is this charming little girl, with the cutest little smile and the bluest of eyes. She developed normally like other infants her age. She had learned to say mama and daddy, and would waddle up to us as she called out our names. That all started to change around her second birthday. All of a sudden I started noticing unusual behaviors for her. She started having serious tantrums, she would rather play by herself than play with other children in the nursery at the YMCA. She had odd repetitive sounds she would make; similar to the sounds an Ewok makes in Star Wars. She became obsessed with hard board books and would constantly pull them off the bookshelf. Other odd behaviors were her hand flapping that she did while waking. She was also starting to get aggressive during her tantrums.
All at once those similar fears I had with Ethan were coming back. It wasn’t until I was doing a homework assignment that I truly knew. I was doing a homework assignment on another autism mom and how her child started to regress in speech. In that second, I realized that it had been months since I heard Piper say “mama” or “dada.” Now the only sounds we heard were her Ewok sounds and other babbling—but no words. Our nearly 2 year old no longer ran to us and called out our names, instead she babbled and screamed. I knew then that something wasn’t right with our sweet charmed one.
This time there was no hesitation, I was not going to wait. I got her into a speech program and made an appointment with her pediatrician. Her pediatrician was able to observe her and said to me matter of factly, “I think Piper might be autistic,” she made an appointment and that was that. By the time Piper had been seen by the same psychologist, I was pregnant with our fourth child, Elliot. So at nine months pregnant we once again found ourselves in a heartbreaking situation.
Much like Ethan’s first appointment, the psychologist observed Piper for an hour, asked us questions, and gave us paper work to bring back for a second appointment. The days flew by like a blur. We gave birth to Elliot, and saying things were chaotic was a huge understatement. Finally the day had arrived. My husband took Piper days after Elliot was born and was restricted from going anywhere—including this crucial appointment. I waited for my phone to go off so that I could video conference when he got there. The entire time, all I could think of was, “there’s no way we have two children with autism.” “I’m sure she just has a speech impediment that will get better with time.”
That was not the case.
I ended the call feeling like a major failure. I indeed had two children with autism. Piper was diagnosed with a speech delay along with level 1 of autism. This time though, he made it clear that depending on how she progresses, her diagnosis could end up being a lower function autism than what she is diagnosed at now.
Double the Diagnosis, Double the Anxiety
So now we have begun the long and continuous road of therapies. We deal with constant meltdowns, sensory overloads, dinosaur obsessed conversations, hitting, biting, so on and so forth. Everyday I wake up fearful of what could possibly set them off. Every time we go out, I have a severe anxiety attack. I stopped worrying about the constant judgment of people when we take them out; those people can suck it! I’m am exhausted. Although I still feel like a failure, and I often cry at the end of the day, I am fully embracing the title of “Autism Mom”. I am their biggest advocate and am so proud of who they are.
We are an autism family. We will always be an autism family, and there is nothing that can change that. There is no cure, no magic pill. We have four beautiful children, and two of those children view the world differently. They may be different, but they are not less.
So for all my fellow autism moms out there. You are NOT failing. There is nothing you did or didn’t do. You have special babies, who are lucky to have such an amazing parent. Life is gonna be hard for us, but it’s gonna be filled with such wonderful memories and laughs.
Take the tears, take the tantrums, cherish the laughs and smiles. Remember—it may be a HoTMESS Life, but it’s your life so love it all!