What I have learned from having a child diagnosed with an autism spectrum disorder
Typically in my columns, I write about lighthearted, fun aspects of parenthood, but today, I delve into an issue that is a little more personal, and therefore a little more difficult for me to share.
This week, my son was diagnosed with an autism spectrum disorder.
His diagnosis caps off a long eight months of evaluations, therapy sessions, tears and struggles to understand why he is just a little different than other kids his age.
Why couldn’t I have a conversation with my son the way other mothers spoke with their kids? Why does my son struggle in social situations when other kids don’t? Why can other people’s kids answer simple questions like “How old are you?” when my child can’t?
As I sat in the psychologist’s office this week and he explained the effects of Asperger’s, PDD and autism on a child, the picture started to get a little more clear as to what my child has been struggling with — and more importantly, what we need to do to help him.
And while our journey into this unknown realm is really just beginning, I feel like I have learned so much more about my son in the last eight months than I did in the previous three years of his life. I still have so much to learn and understand, but I feel like these lessons are ones that will sustain me as I work to learn and help my son.
A diagnosis doesn’t change who your kid is
We first started noticing small differences between our son and other kids his age just before his third birthday. My husband would say, “Do you think that behavior is strange, or is that just a normal kid thing?”
We asked some close family members about it and they encouraged us to take him in for testing. That was incredibly hard to hear — like a punch to the gut. I just wanted them to tell me that he was fine and that all kids progress differently.
I wanted everyone to see his loving, tender spirit and his intelligence, rather than the small things we were starting to notice that made him a little different. I wanted them to see how fun he could be and how much of a sense of humor he has.
Now, eight months later, we have a diagnosis, and we still have the same fun, lovable, smart and caring boy as we did then. He still makes us laugh every single day. He still plays in the most lighthearted, fun way. He still gives the best hugs and kisses.
A diagnosis does not change who your child is or what they will go through in their lives. All it changes is your capacity to understand what they are going through and how you can best help them.
You have to be your child’s biggest advocate
The system to get help for a special needs child is very difficult to understand and to navigate. For us, it was a long series of hearing checks, speech evaluations, sensory and occupational therapy evaluations, screenings and tests.
With every evaluation that ruled out one element, I felt like I had fewer options and answers.
We were sent in circles, from one provider to another, each saying that he may have a speech disorder or a hearing problem or autism. In the end, we kept at it and kept taking him to appointment after appointment to get him the help and information that we all needed.
As a parent of a special needs child, you have to be his or her advocate. They cannot tell you the help that they need. You have to be their voice.
As he grows up, he will need his parents to fill that advocacy role with his doctors, teachers, principals, neighbors and sometimes even strangers who may not always fully understand what he is going through.
You can’t compare your kid to other kids
Every kid is different, period.
While it is hard to see your kid sitting next to a child who speaks in five- to six-word-sentences and can ask you questions that your kid could never ask, there is no real way to compare them.
Each kid has their own personality, their own abilities, their own shortcomings and their own strengths.
At one point, when I was frustrated by kids much younger than my son who were able to have a full conversation with their parent, my mom said if I wanted to compare them, I had to compare everything about them. Those other kids didn’t know their colors like my son; they didn’t know their letters like my son; they didn’t know their shapes like my son.
When comparing your kid to others, all you typically compare is what they don’t do as well as other kids, which isn’t helpful to you or healthy for your child.
There is no such thing as a perfect parent
More times than I can count during the past eight months, I felt like a failure.
I constantly had doubts about my own abilities as a parent. If only I didn’t work so much, I would have been able to do more to help him. If only I hadn’t let him start watching television at such an early age, he would have better verbal skills. If only I had more patience to deal with him when I yelled at him, he wouldn’t be throwing this fit.
A child’s special needs are not caused by poor parenting. Nobody is perfect — and that’s OK. All that can be asked of you as a parent is to do the best you can.
There are always many people there to love and support you
For every person glaring at you in the supermarket when your child is throwing a tantrum because you didn’t go down the aisle you normally go down, or for every person who wonders why your child doesn’t answer simple questions like “What’s your name?” or “How old are you?” there is an army of people there to help and support you.
There are the strangers that give you an understanding smile when you need it most.
There are the people who lovingly take extra care and understanding while teaching your child in a church class. There are neighbors who laugh when they see him running around without clothes in the backyard and who continue to ask him questions and talk to him, even if he doesn’t answer.
There are other parents of special needs children who tell you that it is going to be OK and that they have been through many of the same trials you are going through.
There are friends who listen with an understanding heart to what you are going through and take extra time to pay attention to your child.
There are family members who recognize when you were up crying at night and are there to give you a hug and an understanding ear.
There are his aunts, uncles and cousins and other extended family members who love him unconditionally and who know and cherish all of his best qualities.
There are your child’s siblings who love and learn from your child every single day, who chase around their big brother as if he is the coolest person on Earth — which, let’s face it, he is.
There are grandparents who love your child and who are always the first ones you call when you are struggling with your child, and the first ones you call with every single small, seemingly insignificant improvement that they make — and who are just as excited as you are for every small thing.
Having the love and support from this huge group of people gives your kid the best chance at improvement and gives you the clarity you need to be the best parent you can for your child.
My son was diagnosed and we now have years of classes, therapy sessions, struggles and hardships to come. But seeing those struggles makes every one of his achievements even more joyful and will help to teach me even more lessons that will help me throughout my own life.