Now and Then: Things I wish I knew when my child was diagnosed with autism
by Linda Mastroianni
There are certain events in one’s life that are so significant, we can remember every single detail of that day and, more specifically, the moment when everything changed.
I remember the day I received the diagnosis for my son; I remember all of it, every detail.
I remember how grey it was and the rain that was pouring down. I remember the smell of the freshly painted hallway and the worn-out books and toys in the waiting room. I remember the sound of the secretary’s high heels rhythmically making their way down the hall.
I remember the look of the psychologist’s face when she gave me the diagnosis- “classic autism” she said.
I couldn’t look her straight in the eye, her look of sorrow was too much for me to bear. Instead I was focusing on my son, who was sitting next to me on the floor, oblivious to what the doctor was labeling him.
I also remember the sinking feeling I had immediately after leaving the hospital. I wasn’t certain how I was going to take care of my child in the manner that he needed.
Would I be a good mother? Would I know how to help him? How will I know what therapy is best for him? Where do I even begin?
Suffice it to say, I made some mistakes as we began our new journey with autism but, as the years passed, I also learned a great deal and I got better at handling things differently. I became a strong advocate and warrior for my son. I learned how to be his voice until his was strong enough to stand alone.
Hindsight is always 20/20 but we don’t live life this way. It’s normal for parents to make mistakes in their parenting journey.
However, I must admit looking back, I would have done a lot of things differently – things that probably would have saved me for a great deal of unnecessary anxiety and stress.
Here are five things I would have done differently:
1. Forgive myself more.
I would be less hard on myself, trying to do all of the right things at the right moment for my son. If a certain therapy didn’t work out, I wouldn’t blame myself for not trying hard enough or not starting sooner.
2. Listen to my gut instinct.
I would listen to my inner voice more often when things didn’t feel right and less to what others thought was best for my son. I would not ignore my feelings for the sake of others.
3. Worry less.
I wouldn’t waste precious time worrying about the future and trying to control things that are truly out of my control. Instead, I’d live in the moment, plan for the future but not worry about it every waking moment of the day.
4. Take better care of myself.
I would not wait until I felt depleted and on the verse of a burnout or panic attack before reaching out to get help. I would acknowledge that I too am worthy of all good things and my health is my wealth. Self care isn’t selfish.
5. Take pictures and write everything down.
Enjoy every moment that passes, even the difficult ones because they too hold a lesson and they can sometimes be the starting point to a wonderful milestone that will be achieved. So, write things down to help you remember.
We are all on our personal journey raising our child with autism and no one is identical. Parenting is hard and on most days a lot of us question if what we're doing is enough or right.
What works today may not work tomorrow and that’s okay. Nobody has this figured out. Just trust yourself enough to know that you’ve gotten this far and you’ll continue to go on even further.
Take the lessons of today to help you tomorrow. Every day is a new day to start fresh and learn new things to make us better parents and better human beings.
Linda Mastroianni is founder, writer, and blogger of SpeakingAutism.ca and autismatwork.ca. She is a certified life coach providing consulting services to special needs parents on many issues such as: moving forward after the diagnosis, divorce with a special needs child, dynamics of a blended family, special education, life skills strategies, transition into the workplace, aging out of the school system and much more.