Our Differences and “What Others ‘Think’”

 Leisa has a creative and artistic teen daughter with Autism.  She’s also made me aware of my new favourite term: “seminar slutting”…I’m so guilty of that!  Here’s Leisa’s story:

As I’m writing this, I’m sitting in the dentist’s office waiting room. Grace, my teen daughter with autism, has been called back. I’m listening to the mostly unintelligible moans turned screams of an elementary school-aged boy, who, at the glance I stole when he dashed out the waiting room door into the hallway–a tired-looking, but patient older sibling following quickly behind him—has Down syndrome.

Places like this, when I am face-to-face with other parents perched on over-cushy sofas, waiting like me, I am confronted, as are many special needs parents in such times, with the perceived differences between my life and theirs.

Today I wonder, not for the first time, what they make of our lives. What do they think of my daughter? What do they think of me? Do they feel pity? Disgust? I don’t spend time caring enough, generally, to notice if they are staring or purposely staring the other way, though I’ve seen both enough to know it happens. Frequently. I cannot not notice. It’s often in my line of vision most places we go in public. My daughter’s autism is moderately severe. Her communication skills are fairly impaired. She’s beautiful. She’s happy. And obviously very different, which one would generally notice upon more than a 10 second glance.

I’m extremely grateful for the years I spent in therapy and for all my seminar slutting I did before Grace was diagnosed and since. One of the most helpful tools I ever came away with from the transformational weekend experience, More to Life, formerly called Life Training, which I did 20 years ago, is this take-home message:

We don’t really know what other people think. Sure, we can intuit. We can choose to obsess. But, what we think and obsess over may not even be real. Our intuitions may be off….Their mind may be so clouded with their own problems they don’t really notice the differently abled child in front of them. This is often the case. So is the other—noticing. In the end it comes down to me. (And, you–if you are in my position in any Life situation)….We cannot control what others think of us. Nor, really “should” we care. Sure, ideally, we live our lives with integrity and kindness, doing our best and ideally that is communicated to others through our words and actions. And that’s the best we can do. Others judge us? (Or not.) So what? Really.

The Buddhist teaching of just being Aware and then not attaching is something I’ve learned over the years in the meantime.  But starting out, I would pull out these questions I individualized from my Life Training [More to Life] experience for those times when it was my child was the one running down the hall or making unintelligible sounds….

These strangers that I think or I KNOW truly for sure are looking at us…They don’t know me. They don’t know this is autism. They don’t understand. They do not live my Life. And regardless, I don’t care what they think.

I don’t care what they think…because in the end it comes down to what I think of me. I’ve got enough baggage of my own with the sheer facts of Life, atop Autism. I don’t need anyone else’s…or anyone else’s presumed baggage crowding my mind.

And the father at the dentist’s office–the father of that little boy named Charlie, as I heard him called? He didn’t seem to care either. Good for him. It’s called Coping with the Journey. And it’s a fabulous and mandatory skill. There are far too many other hurdles on this ride requiring our spiritual, emotional, mental and physical energies. Carry on. Release the presumptions. Unpack your bags and as they warn you at the airport these days, don’t pick up anyone else’s luggage. Namaste.

Leisa A. Hammett is a speaker, advocate and author of  From Heartache to Hope: Middle Tennessee Families Living with Autism. She is working on her second book about autism and blogs at www.LeisaHammett.com  “The Journey with Grace: Autism, Art & All The Rest of Life.” In 2007, she appeared on the autism feature segment of ABC’s “The View,” which recognized her daughter’s art (www.GraceGoad.com).

 

Speak Up For Special Needs!

 

 

 

Was at the Early Years Centre this morning with my soon-to-be (next Wednesday!) 6 year old DS for its “Something Special” program offered every Thursday morning.  It’s a program where parents of kids with special needs and their children can come and play.  The toys put out are more sensory-based than when we regularly go there.

 

I was speaking with another mom whom I met last week.  Her son is entering Kindergarten this September and we have been chatting about how to advocate for your child.  She’s having an issue with her son playing soccer.  The coach’s son is bullying her child a bit, and instigating bad behaviour in her child.  I was offering suggestions of the type of language she can use with the assistant coach as she’s pretty sure the assistant coach is aware of the issue, based on comments he’s made in the past. 

 

She’s a very calm and quiet woman so I was trying to encourage her that this situation she’s encountered with soccer will be great practice for her in advocating for her son in Kindergarten in the fall.  The big difference she and I had walking into Kindergarten was that my son has an official diagnosis (of Autism) whereas her son doesn’t yet have a diagnosis. 

 

My kids had been in daycare prior to Kindergarten so we didn’t have to work on transitioning to school at all…especially since their former daycare centre was located in a school.  That made it a bit easier for my son.  In Grade 1 this September however, he will be attending a special needs class at school AND (hopefully) IBI will have started/be starting. 

 

My biggest advice to parents of children with special needs, diagnosed or not, is learn how to be assertive with the school system.  If your child can/may/will benefit from something, ask for it to be implemented.  If you work with the school, they will usually try to do as much to accommodate HOWEVER, also empower yourself with your school board’s policies related to special needs and special needs accommodation in the classroom.  Request a meeting with your principal (and teacher and Educational Assistant) prior to school starting, and continue to follow up until you get that meeting.  Be the “squeaky wheel” but please be nice about it. 

 

Arm yourself with information and knowledge because YOU are your child’s best

and sometimes ONLY advocate!

“Scary Mommy” Reflections

 

 

 

 

Scary Mommy has a great blog post this week – well, they are all great, but this one has caused some reflection on my part because my son has Autism. It’s inviting parents of typical kids to ask those hard questions to us parents of special needs kids that they are afraid to ask.

I have three pet peeves…firstly, don’t ask “what’s wrong” with my son. There’s nothing “wrong” with him. He just interacts with the world differently, same as there’s nothing “wrong” with me for not aceing science and math in school the way you might have; or that you didn’t ace languages, music and history the way I did.

My second pet peeve is when someone calls my son “Autistic”. Someone with Cancer, isn’t “Cancerous”. My son has Autistic traits, but he isn’t Autistic.

Lastly, when people tell me that they are “sorry” about my DS having Autism, I try not to look at them like they have three heads. Why are you sorry? I’m not. Autism is PART of how my son learns and interacts, it isn’t WHO he is. My son is AWESOME!

There is also a long discussion on Scary Mommy about how to help a parent of a child of special needs. My advice is to be there, whether emotionally or physically. If you hear we are having a bad day and that we aren’t leaving the house because of it, show up. Give us time to have a shower while you are there, bring us our favourite drink (mine’s a Starbucks chai latte, lactose-free milk, no water…in case you were wondering), do the dishes, fold laundry, bring us a home-cooked meal, etc. Sure, they are “chores” that you probably don’t want to do at your place but I can tell you from experience that my stress levels increase exponentially by the second if I haven’t had time to do the dishes (don’t have a dishwasher) and I can’t find counter space to prepare whatever food my DS wants at that moment.

At the end of the day though, just ask how you can help – please don’t be offended if we say there’s nothing you can do though…sometimes it’s just harder for us to explain how to help because you might unintentionally trigger a meltdown. Ask about the specialist appointment we took our child to today – just be prepared for a detailed answer if you ask about the appointment. 😉 Invite us out at a time of day that works best for us, whether it’s a playdate for the kids or some grown-up time. We get very isolated very easily as we have been asked if “other moms groups might be more suitable for my son” often.

Most of all though, share in our excitement about developmental advances our child makes. Remember how excited you were when your child started talking/walking/went potty the first time? We are just as excited, if not more so, when we finally get to experience those advances when our kids are older. Can you imagine how excited I’ll be when my soon to be 6yo son will finally be potty trained??!!!

Above all, if you happen to witness my son’s complete meltdown in public, walk over, ask if there’s anything you can do to help and offer to hold my bags, then try to keep up with us as my son takes us on a “Meltdown Adventure”, which can lead anywhere or nowhere. Hope you’re wearing your running shoes!

42 Years and Counting…

Today is my parents’ 42nd wedding anniversary. As each year goes by, I’m amazed at the length of their marriage and there’s definitely no end in sight. If that’s not “enough”, my parents have also been working together in their own business for 32 years!

My dad is a very passionate and opinionated man – which has caused some conflict between us over the years but we are either best of friends, or at each other’s throats…that’s just the way it is. I’m NOT admitting that we are very similar, not at all. 😉 He has been a proud Rotarian forever and to me, exemplifies Rotary’s guidelines: “It is the truth? Will it be beneficial to all concerned? Is it fair to all concerned? Will it build goodwill and better fellowship?”

My mom is an absolute saint and everyone loves her as soon as they meet her. She’s a beautiful (inside and out) Brit, who is passionate about gardening and Golden Retrievers. Until recently, she and another local woman in town ran the Dog Therapy program in town, training dogs (and their owners!) to go into retirement homes to visit the residents.

My family has a history of long marriages. It wasn’t until my paternal grandparents celebrated their 50th wedding anniversary that I found out it was actually my grandfather’s SECOND marriage. They had professional photos taken in their garden for their 50th anniversary and the photos captured them perfectly…they were in eachother’s arms. My grandmother was perfectly groomed and accessorized, looking at the camera with a calm smile, while my grandfather was looking at her with admiration and his hair was all wind-blown and very “crazy scientist-like” (which, he actually was!).

My maternal grandmother passed away early in life. I was always amazed that my maternal grandfather still referred to her as “my wife” whenever he spoke of her…which wasn’t often, but still…

My biological grandfather was married forever as well (not sure the actual length but I’m sure it was over 50 years too) and he spoke very fondly of his wife who passed away a few years before he did.

When my own marriage ended early 2010, I wasn’t in the frame of mind to pay much attention to my parents’ wedding anniversary last year (not even sure if I congratulated them…oops). This year however, it has caused me some reflection. Although I’m still legally married, my marriage ended after 6.5 years. How on earth have my parents made it for 42 years??!!! I actually asked my mom that last year what has made their marriage work, and her answer was “communication and respect”. Seems simple, and yet those two things weren’t in my marriage…on either party’s side (among other things, but that’s for another day). I’m still in the frame of mind of not knowing if marriage is something I will ever enter into again, but with the end of my marriage, I have developed a sense of awe and wonder about how other couples make their marriage work for so long.