At our monthly parent-support group meeting the other night I listened while the mother of a newly-diagnosed three-year old shared her fears about her son's diagnosis. I have never been in her shoes--L. was almost seven before he was diagnosed with AS, an autism-spectrum disorder. I felt a little out-of-place at the support group meeting, facilitating a discussion between a small handful of parents still reeling from the newness of their children's diagnoses.That time in my life feels so faraway to me now, yet if I sit and think about it long enough it comes back to me without too much effort. Sometimes, though, I am surprised to find myself so far from there. This is the way it is with all journeys: you can easily recall the starting point, and you're pretty sure you'll know what the finish line looks like, but it's difficult sometimes to see how far you've come.
Surely it was just last fall I sat at the same table, clutching my son's new diagnosis to my heart, feeling bruised and battered and, yes, even relieved to be there. And yet now, four years later, here were people asking me for advice.
What would you do next? the mother of her newly diagnosed child asked me.What would be your next step?
Here's what I shared:
Reach out and connect with other parents--virtually, or in real time. I can't even describe what a lifeline this was to me, as we emerged from a very dark and difficult time.
Link into area resources. This might mean getting your name on a waiting list for services such as parent-information sessions, or parent-training sessions. It's easy to feel impatient and frustrated when you receive a diagnosis and then have to wait a few months before you can "take action" but remember that you'll be helping your child for all of his life.
Read, read, read. I used the time following L.'s diagnosis to read everything about AS I could get my hands on: books about school-related issues, home-related issues, diet, behavior, anxiety--you name it. I also bookmarked lots of websites and blogs written by parents of children on the spectrum--these were invaluable to me, and I am still friends (albeit virtually!) with many of the parents who reached out to me following the diagnosis.
Don't let the diagnosis define your child. This is a tricky, but critical, I think. Following any diagnosis, it's easy to get caught in the trap of perceiving your child through that diagnosis and letting it overshadow everything, and explain everything, and determine everything. I think this is a normal part of the process, but you have to be careful to be conscious of this, and let it go. While a diagnosis can explain a lot, and provide a tremendous amount of comfort and relief, even, it is only an explanation for why things might be so difficult for your child, not a definition of who he is.
Find good medical care professionals who understand your child's diagnosis, and who treat you with respect. I run into so many parents who tell me that their child's doctor doesn't seem to understand what they are going through, or who belittles their approaches to therapy, or who even second-guesses their choices. Get these people out of your life! It might be tempting to stick with the tried and true, because no one enjoys the process of hunting down new doctors, but it will be well worth it in the long run. Get referrals from other parents of children on the spectrum, visit some offices, research medical practices. It was a roller coaster process for us to find a good developmental pediatrician but it was very worth the effort.
Plan for the future! So many parents feel trapped in the here and now, and the present mooments can be so difficult that they have trouble seeing into the future, or imagining that things might change. Remember that our kids mature and grow just as other kids do and that parenting ANY child comes with challenges. Set goals for your child, and start thinking about the next steps in her education.
Finally, be good to yourself. Trust in your judgment and instincts, and don't let anyone tell you otherwise. It's easy to be at the receiving end of lots of advice and even judgments from family and friends. Remember that they are only trying to help in their own ways, but protect yourself, too, because even though your child will need you now more than ever, your needs should never, ever be overlooked.