Seven years ago, I wasn’t surprised when told my daughter needed some occupational therapy. I was surprised when the occupational therapist followed me out to the car after the assessment, giving me some tips while I furiously scribbled down names of books and accessories I would need at home to support my two year old daughter who was experiencing significant difficulties as a result of sensory integration disorder. The therapist talked at me, ripping off a bunch of book titles, websites and outside resources I could seek out for support at warp speed. She also quite nonchalantly stated that my kid clearly had an autism spectrum disorder, but "of course I'm not making an official diagnosis here and now. That will have to come from someone else later."
For a week after receiving the news that my daughter had autism, I lost sense of time and space. I wandered around a bit, trying to digest the news and wondering what I should do. I didn’t know what some of the things the therapist mentioned even were.
Feeding group? WTF is a feeding group?
Her treatment plan called for weekly physical therapy, twice weekly occupational therapy, developmental therapy, speech therapy and daily implementation of a sensory diet.
Sensory diet? WTF is a sensory diet?
Nothing was presented to me as optional, something that might be more or less important than another, and this reality overwhelmed me, yet fueled by fear and adrenaline, I did things wrong and right. But the first right thing was to gather a support system. After we gathered Team Cate, things fell into place. Sure I grieved a bit, not because a dream had died, that my daughter was somehow imperfect, no! I was out of sorts mostly because I felt guilty for not seeing things clearly and powerless to help her or how to create a new normal for our family. I was told that within a year, my grief would be long forgotten, as my daughter would make so much progress through early intervention.
Fast forward a few years to the first time a friend told me that her child had been diagnosed with an autism spectrum disorder. Honestly, I wasn’t surprised about the diagnosis. I was surprised at how the news affected me. Immediately I felt as if a hot rock that had just been dropped into my gut. Along with the burning discomfort and was briefly paralyzed by my emotions. My grief was not long forgotten. I remembered exactly how it felt to be at the beginning, to feel overwhelmed and powerless.
In the past two years, half a dozen friends have come to me with the same news about their child, and that same old gut being punched, brain fizzle kicks in just as hard as it did years ago when it was my own kid. I’ve done the next right and next wrong things. I will tell you what the three most important rights things you can do if you want to help a friend going though this difficult transitional time in their lives as the parent of child newly diagnosed with autism (or really any illness, condition, physical or emotional crisis, etc.).
1) Offer help. Be specific if you can, i.e. “I would like to help you by doing X. Would this be helpful or can you recommend something else that you’d prefer?” Sometimes what you think people need is not even close to what they would ask for had you asked them. Sometimes they don’t know themselves. The most helpful things for me were acts of service. Babysitting one of both of my kids for a few hours, being a shoulder to cry on or share a meal with were the best gifts during the early days.
2) Do not give advice, but feel free to share ideas and resources. “This book helped me. Maybe it will help you. Would you like to borrow it?” or “You said you were looking for an OT yesterday. My neighbor’s son goes to OT at X clinic and the family raves about it. Here is the phone number in case you want to check it out,” or “I know someone who experienced something very similar with their child. Would you like an introduction to them so that you can find out how they handled it?” I can’t stress enough how important it is that you do NOT, ever, under any circumstances TELL a parent what they should or should not be doing. That kind of advice should be left to the professionals involved in the care of child. Friends need to listen and if appropriate, be a conduit to ideas and resources if appropriate, and a non-judgmental source of support and comic relief.
3) Join the team! Most people want to help. They do! The concept of paying it forward applies to any and all situation where a family is experiencing a challenge and finds themselves in need of some sort of support. There IS actually an “I” in this type of team and that “I” is the individual support and commitment you make as a member of the team. We all have a role to play. Find what role best suits you and strengthens your team.
Cate’s first developmental therapist told me that after a couple of years actively participating in the intensive therapeutic program designed for her, that she would make progress in her own way and in her own time. She told me that I’d need to help others, you know, pay it forward the way people did for us. Cate did make progress! Her story, our story, is just that – it’s ours. It’s not typical or atypical. It’s just specific to us. We just keep doing the next right thing for our family, our child, our life, with help from our team.
So last week when a friend came to me, telling me that her daughter was newly diagnosed with autism, I waited patiently for the storm in my stomach to calm and the urge to scream and shake my fists in the air passed, I followed my own recommendations. She will enjoy free babysitting services when requested, as that is what she identified as something else I can do to help her. My friend will also be receiving a stack of books and an email of resource links from me this weekend. One of these resources is the link to Little Friends Center for Autism in Naperville, Illinois, which is a team I support.
On Sunday, June 23rd, I will be walking in the annual, 2013 STEP UP FOR AUTISM WALK sponsored by Little Friends Center for Autism in Naperville. I’ll be walking on Team Tommy Kistler. In keeping with my commitment to use my blog to raise awareness and cashola for worthy causes, I am offering some payback to those who are willing to support Team Tommy this year. I am constantly being asked to give “shout outs” to other blogs or small business. Well here is your chance to get a big ass shout out.
The first 10 people who donate $25 dollars (or more) to Team Tommy will have their blog or business featured in a blog post and on my Facebook and Twitter page. I will post the blog link on my Facebook page FOUR separate times during the day and post links for each blog’s Facebook page/Twitter and actual blog URL as well. Once people headed your way, it’s up to YOU to keep ‘em coming back. Click HERE to donate!If you don't have a blog or a business you want mentioned, I can send you a signed copy of my book.
I have a special place in my heart for Little Friends Center for Autism, as their diagnostic services team helped us form our team as well as help us learn how to be valuable team players. I hope you’ll be a part of the ever growing team of people working towards increasing awareness, providing services and education and raising money for the various organizations helping people in the wide spectrum of autism.