The road ahead

As I sat in one of the Adirondack chairs at  Nellie Breen Park this past weekend, cold beer in hand (civilized, right? And thanks again fellow Inglewoodian who shall remain nameless), watching my children play completely unassisted while I chatted with neighbourhood moms and dads, a thought occurred to me: I have arrived!

It was the first time I was able to actually relax at the park, without worrying about Bennett falling from the top of the slide platform, or him needing my help navigating across the boulders by the gazebo or balancing on the spinning ring apparatus. Meanwhile, Avery played with a gaggle of her girlfriends; occasionally Bennett would chase them down and they would run off screaming. For two hours this went on and I think I stirred from my chair maybe four times. It was liberating.

I love this adapted bike from Renfrew -- makes it a lot easier to learn to ride. At Nellie Breen park in Inglewood.

Gotta love this adapted bike from Renfrew — makes it a lot easier to learn to ride. At Nellie Breen Park in Inglewood.

Bennett and I returned to Nellie Breen on Tuesday morning with his physical therapist, who brought along an adapted bicycle for Bennett to ride. Apart from his habit of looking in every direction except straight ahead (and thus veering off-road), he did great. She’s thrilled with his progress this year and can’t believe all the things he can do by himself (I’m a proud mama). The fact that he’s five and just learning how to ride a bike is a non-issue — I’m happy he’ll even try. And I’m ecstatic that he wants to climb on everything. Hooray!

After my story in Swerve came out last week I was inundated with supportive e-mails from family, friends and strangers. Some people shared their own stories and struggles with me; everyone wrote words of encouragement. My sister-in-law, a social worker, wrote this:

“I ran a support group for a couple of years for parents dealing with “ambiguous loss” (as I called it); mostly those who adopted children and later found out they had FASD and were mourning the “loss” of their dreams/expectations of that child’s future. Very hard. We talked a lot about how the child may be completely happy in their future world they and their parents created for them, but it was the parents who had to change their expectations of what the child’s future “should” look like, as “normal” may not be the reality for them or make them happy. However, “normal” is different for everyone (and usually only an illusion anyways)… Whatever works the best for the child to reach his full  potential in life is all we can hope for. They are all  so different, and I’ve heard of so many “hopeless” cases that have turned out fabulously with futures with jobs, great homes, even marriages and children. So never lose hope.”

I love her perspective, and found it fitting that one of my mom friends whose daughter also has autism, chose to share this inspirational e-card yesterday:

We're travelling a different path, adapted bicycles and all, and I'm choosing to embrace it.

We’re travelling a different path, adapted bicycles and all, and I’m choosing to embrace it.

The road ahead looks clear — if different than I dreamed it would be — and, hopefully, easier to navigate than it’s ever been.

3 responses to “The road ahead

  1. Allison Colpitts

    We should all challenge our perspective on life, expectations and children like you have. You are an amazing women, mom, friend and writer. I loved your article in Swerve and was brought to tears by what you shared. Both happy and sad tears. You have two amazing kids that are super lucky to have the parents they do. I hope we can share a few cold beers in the park this summer. Not sure I have totally arrived but here is hoping.

  2. Charlie Hartle

    I too have a “Bennett” but SHE is 25 now !!!! Life was challenging when she was younger, a heartful and a was therapy, (behavioral, speech you name it we were there) doctors many!!!! She also has a seizure disorder ..OCD..and other health issues!!! Life was all about our daughter and ways to keep her included in our family life..Looking back, life was easier then than now…you don’t have the same control or excuses “oh special needs kids”
    Now you have an adult that needs some sort of quality of life..of a work experience life skills and the worry about what happens to them when we die..?? You now can’t pay a very reasonable sitter to watch them overnight or even out for a few hours in the evening, the on going of life now becomes DARK?? don’t want to put them in the system because no one cares about her like we do, . ( Very complex Needs and a frustrating individual ). But by now you’re burnt out…So you put them in programs hope for the best and really have no life…expect for the consent worry and fears …so all these kids grow up..they are not cute and little anymore ..where is all the help for them now??? Adult life skills…schools??? Peer programs?? They are gathered together ( with all ranges of abilities ) by a caregiver(who is still looking for that better job, as they are not being paid enough) to wander a mall or some activities that the special needs adults have no interest in!!!!!
    Yes I think cocktails maybe a good thing !
    Breakfast wine anyone??

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