When Aidan was first diagnosed with autism, I felt completely overwhelmed. If I knew then what I know now, here’s what I’d do:
Find at least one other parent of a child with autism
Parents are the greatest guides on the planet and can give you shortcuts to finding services, recommendations for schools and therapists, and generally, help you get on your feet. Some of the best friends I’ve made in my life have been other autism moms. Ways to find them:
Find out your child’s rights
You need to know how to ask for services and to what services your child is entitled. A good place to start is: wrightslaw.com
Read about autism in the words of people who have the diagnosis
This was something I did early on, and it was both enlightening and comforting as I was trying to understand how to communicate with Aidan.
Work on your partnership or marriage
It’s easy to neglect and even damage your relationship when dealing with the stresses of autism. Finances and patience can wear thin, sleep is elusive and people often have very different ways of coping with their child’s diagnosis. If you feel your relationship is fraying beyond repair, find a therapist and start rebuilding your connection.
Remember: autism is marathon not a sprint
And it’s a “two-steps-forward-one-step-back marathon, not a straight shot to the finish line. You’ll have days when you feel you just can’t take another setback, tantrum, rejection of services or gawking stare from a stranger. My mantra on these days is, “This is temporary.” Be patient and kind with yourself as you make your way in this new world. Find your friends and keep them close. Get a foot massage. Run around the block. Drink wine. (Preferably not all at the same time but you never know…) Write down a list of things your child has accomplished each day – no matter how small: “He handed me a toy today” “She let me brush her teeth before school.” When you’re feeling down, you can go back and read about these triumphs. It’s crucial that the negative aspects of autism don’t eclipse the joy your child brings you.
Don’t isolate! Use Facebook and social media
Share your experiences, the good and the bad. You’ll discover that you’re not alone. A few examples of my most recent status updates:
- “Day #11 of winter break: after running up and down our street with a frantic therapist in-tow, Aidan gleefully strips and pees in Niagara amounts all over our bed pillows. Is there poetry in this?”
- “I’m so tired, my eyebrows hurt.”
- “Tupperware, shoes, a football, volleyball, and a tub of margarine, 2 wiffle balls, a large watering can and about 500 refrigerator magnets: these are just a few of Aidan’s favorite things to throw on the roof.”
- “Listening to Aidan rage and despair in the grips of something unseen. Stay calm. Stay present.”
- “Yesterday morning, Aidan rose at 4ish before the rooster, even. We were too tired to move. Eventually, Hugh stumbled into the kitchen expecting total mayhem and instead found this: our boy, once labeled ‘severe’ and ‘unable to understand anything’ had made his own breakfast of waffles and a perfectly cut orange on a plate.”
Do you have a resource to share for families facing an autism diagnosis?