Z-Diggity was born healthy and developed very normally as an infant and toddler. He met all his milestones, was a pretty happy little guy, and aside from some difficulty with pronouncing some speech sounds, never showed significant signs of developmental delays. He had some growth issues that eventually led to a diagnosis of Celiac Disease when he was 4. In the fall of 2013, Z-Diggity started preschool. He had a hard time separating from me and participating in the class, but we thought that was normal and it would improve over time. It didn't. He was working with speech and occupational therapists to address the speech sounds delays and some fine motor delays, and shortly after Christmas, the school asked us all to meet. They said that Z was becoming increasingly stressed and anxious at school. He wouldn't play with the other kids at all, he would move as soon as anyone joined him at a center. He wouldn't eat his snack unless he could have a table to himself. He wouldn't participate in therapies at all. He wouldn't respond to his teachers. And he appeared to be finding it increasingly difficult to let me leave when I dropped him off. Concerned, we requested that the psychologist from the team he was working with come and observe him. We thought we were likely dealing with some kind of anxiety disorder. I started researching and decided that it was probably separation anxiety disorder. The word "autism" came up, but was quickly dismissed. He just didn't seem like a child with autism to us.
After observing Z in the classroom, the psychologist asked to talk to us. Her words hit us like a ton of bricks. "Have you ever considered that he may have autism?" We hadn't. Not seriously. Yes, he was rigid. We thought he was just stubborn and quirky. He focused on certain topics and talked excessively about them. We thought he was just really smart! He was so verbal, he could carry on a back and forth conversation, he played interactively with his brothers, he showed affection, he just didn't fit what we thought autism was! Oh how uninformed we were! The psychologist began the assessment process and even as I filled out all the questionnaires, I had my doubts. I suppose a lot of it was denial. Family and friends who we told had a hard time believing it too. But, when the results were all in, we were told that Z did indeed have moderate Autism Spectrum Disorder with features of ADHD as well.
There are some things a parent never wants to hear. "Your child has cancer." "Your child is missing." "Your child has been arrested." "There's been an accident. I'm so sorry..." "Something doesn't look right on the ultrasound." "Your child has autism." Please understand that I do not equate being told my child has autism with being told that they have died or have a fatal or life-threatening illness or injury. We feel incredibly blessed that our son is alive and is physically healthy. Nonetheless, we had been told that he had a permanent disability. For the rest of his life, some things will be much harder for him than they are for "neurotypical" people. He is much more likely to face bullying. He is more likely to struggle to obtain and maintain employment and may end up being underpaid because of his disability. He is more vulnerable to being taken advantage of. Living independently, getting married, having children, none of those things are guaranteed for him. We still have our child, but that day, we lost some our hopes and dreams for his future. We were plunged into a world of uncertainty. The grief is not the same when you are told your child has a permanent disability, but it is still a very real grief. We grieved. We still grieve. But we also have hope.
We made the very difficult decision not to enrol Z in kindergarten for the upcoming year, despite the fact that he would be turning 5. Because of the funding and additional support available for preschool children, we decided, with the strong recommendation of his psychologist, to put him into preschool for another year. He was not happy. He hated preschool and believed that he would be much happier in kindergarten. It turned out to be the best decision we could have made. Z is now working with an aide, a speech therapist, an occupational therapist, and a physical therapist. We also have the support of a psychologist. The team has been wonderful and very supportive. Z has made huge gains this year. He participates in class discussions. He eats his snack with the rest of the class. He talks to his classmates and allows them to play with him. He does crafts and goes to the gym. He got up on stage at the Christmas concert. He didn't sing, but just standing up in front of everyone was a huge step! Perhaps the biggest step is that he now lets me leave the classroom with a big hug and he sits down with his aide and engages with her!
The past year has not been easy. Our lives have changed. It can be very overwhelming having people coming into your house all the time. We have something going on, aides, preschool, playgroup, every day Monday through Friday. I have to keep my house tidy now! (I think my husband may be thankful for that one!) We still struggle with behaviors. Understanding them does not always make them easier to deal with. Many times, it seems we take 2 steps forward and 4 steps back. We have learned so much over this past year, and we still have so much more to learn. We realize that we are in this for life.
I think the biggest thing that has changed for me this year is my perception of my son. I have always loved all 3 of my boys fiercely. That has not changed. But I have come to see Z differently now. I recognize that he is still the same boy he was before we started down this road. He is affectionate and loves snuggles. He is smart and has the memory of an elephant. He can tell you what month everyone in the family's birthday is in. He can tell you anything you might want to know about Star Wars Rebels, and then some! He could be your tour guide at the Zoo! He has an awesome sense of humor and loves to trick people and make them laugh. He has a magic smile and a laugh that you can't help laughing along with. He takes awhile to warm up, but once he does, he is chatty, friendly, and a lot of fun. He plays well with his brothers, most of the time. He craves approval, just like any other child. And he is strong. Large social groups cause him tremendous anxiety, but he goes anyway. He gets out there and he lives his life, even though I'm willing to bet some days, it would be far easier for him to hide curled up in his Batman blanket in his bedroom. He is a superhero. He is teaching me to be strong, to keep going when I want to run away to get away from the screeching. To be patient when I simply cannot understand why he is refusing to eat this time. To stand up and fight for him when he is not given the support he needs, which I know we will inevitably face. To find the humor in life, and to accept and celebrate those things that make all of us wonderfully unique. He is wonderfully unique. Fearfully and wonderfully made.
We have challenges. We have days when we want to give up. We have a whole lot of love.
We have hope.
