Friday, March 2, 2012

No more excuses!

It hit me when I was speaking to researcher Anne Snowdon about her study on the social isolation of youth with developmental disabilities. She emphasized that the findings weren't just about the youth: "It's not just the child that has no or few peers," she said. "It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their communities. I question whether after a certain length of time parents don’t just give up or don't have time or energy to maintain friendships."

Now, I'm not personally concerned about friendships (maybe I should be!), but I am worried about finding ways to squeeze in stress reduction. I know it's a necessity for parents of kids with disabilities. But recently I've let it fall by the wayside.

When stressed, which is pretty much everyday, instead of going outside or working out at the club or calling a friend -- I have fallen into eating treats and drinking Americanos or hot chocolates. The more I don't exercise, and the more I eat, the more I don't want to exercise: I'm too tired. I can't fit into my clothes. I don't have time. What if that lady at the club asks me if I'm "chubbing out" like she did a few years ago?

So today at lunch I popped over to LuluLemon and picked up two funky tank tops and a sweat shirt (a size up from the last time). Now I have one less excuse.

How do you fit in exercise or other ways of reducing stress? Really? What do you do? When? Please share with us. I believe it's so important.

Thanks! Louise


Oh, my. This post speaks way too loudly for me. I am exactly the same, here, as you. I absolutely have let exercise and stress-reduction, beyond the minimal yoga that I do and nearly daily meditation -- fall by the wayside. And the older I get and the less I do it, the more difficult it is to begin. I don't even know what to say about it, but perhaps you've perked me up a bit.

On the other front -- friendships, social isolation, etc. -- it's interesting, but now, after seventeen years of doing this, I'm starting to feel more of a strain in my social life. I'm a very social person and have always had wonderful, close friendships. I feel, though, growing resentment toward many of my friends and that concerns me enough that I've begun seeing a therapist. I know it's not "their fault," but it's difficult to carry on with such vastly different lives. I do get much comfort, support and inspiration with my online friends and those with children with special needs that I've met recently in person -- but I'd like to keep my other friends and hope that therapy will help me to do so.

Go Elizabeth Go!

Let us know if you make progress with the stress reduction.

Thank you for sharing about the friendships. I certainly get what you are saying. I think it can feel very alienating when friends don't have a firsthand understanding of something that is such a central part of our lives. Please share any insights you have as you explore this further! xo

Definitely comparable to my experiences. We knew life would change when we became parents, we never really imagined how much time and energy we'd put into getting our eldest daughter into accessible programs, trying to find friends for her, and working through all her PT and other appointments.
Similarly to Elizabeth, my experience as parent has been so different than my friends' with their typically developing children that it almost seems like we don't have anything in common. My daughters are, of course, my top priority and my own social circle has just been getting smaller and smaller since my eldest daughter was born nearly 7 yrs ago.

I try not to worry about what I don't have, such as friends or time to myself. When there is no respite possible, no vacations, just drama and the inevitable wear and tear on mind and body of caring for an extremely physically and mentally compromised child fourteen years, as important as "taking care" of yourself is being realistic about what you can accomplish and what is truly essential to your existance in order to avoid stressing about it.
While I love to exercise and feel better when I do, I am not able to half as much as I would like and was used to before my son was born.
Fortunately not having social interaction much myself, and my son has none, removes some of the obligations that come with that. Which was partly a decision and partly circumstance.

exercise.. does chasing a toddler count that as close as it gets around here sorry to say.

Its been almost three years now and I am just getting the stress reduction. I have learnt that I need to pray, read my bible, Zumba, Blog, and walk 5 km to keep me right. One of the things that clicked in my brain is when I do these things I am a better mom and wife.
Louise, I am on the 90 day Challange by Body By Vi and I still drink my one cup of hot coco or diet pop a day. I have learnt for my mind I need that treat. Losing weight is great but my mind is more important. Make sure you keep that one treat a day!

This is a timely post for me because friendship is something I've been thinking often about lately. I know I am in a different universe altogether with my parenting experience. But, in general, I've come to realize that my friendships (not that I really have any time to nurture them, more like just being friendly with when I see in person) have been divided into two groups: those who acknowledge my son's existence when they see him and those who do not. But, truthfully, hanging out with friends or going to social gatherings these days is more exhausting for me than enjoyable. And, unfortunately, much of it does have to do with the fact that I feel as if I live in an alternate universe. Otherwise, while we wait for nursing care to be approved, I've taken a rather expensive route to de-stressing, which is hiring help for five days of the week to help me with the twins, Andrew, especially. Every day, I have at least an hour to hole myself up in my bedroom, go out for a walk, or just sit somewhere quietly. Without that, I think I'd be in bad shape, indeed.

For support and friendship, I have been part of an amazing online group for parents/caregivers of children with trachs for the last 10 years ( I've had the privilege of meeting many of the parents in person through conferences we've had and through moms' weekends. I've made friends for life from this message board and they have truly gotten me through the last 13 years with my son.

As far as taking care of myself - I think one of the best things for me has been my ability to continue to work outside the home. My son is medically fragile (trach/vent dependent) and to be able to be part of the "real world" during the work week has been a lifesaver. I'm fortunate to have nursing 10hr/d - 5 days a week so that I can work outside the home.

I also have become involved in an organization - Cure CMD (congenital muscular dystrophy - which my son has) and the founder has become a good friend of mine. One of the ways this organization raises funds is to participate in 1/2 marathons across the country as a team. I've taken up the challenge and have participated in several 1/2 marathons as a member of Team Cure CMD. The camaraderie is the main reason for participating and the health benefits are a bonus.

Respite for caregivers of children with complex medical needs is near and dear to my heart and is what compelled me to establish a foundation which provides respite opportunities to parents and caregivers of medically fragile children.

It's never easy or comfortable to put your needs before those of your child, but it's imperative at times if we are to survive this journey.

Wow, as I read some of these comments it makes me think that I too struggle to reconcile my parenting experience with that of friends/relatives.

I feel I'm so lucky to work at a children's rehab hospital where I am surrounded by other families like mine which in a way normalizes my experience.

I know what it's like to get a glimpse into the lives of friends' and relatives' children who are Ben's age and feel like we are on another planet and very alone.

HI Eric -- You make a really good point that we need to be realistic about what is possible and not turn stress reduction into another thing that is stressing us out.

I think being able to see our situation clearly, as it is, without always wishing it were something different, is very important.

Hi Sherry -- Your toddler sounds like a good workout!

Thank you Candy for sharing your 'recipe' for stress reduction. I like how you acknowledge how each of these activities contributes to your wellbeing.

And thanks for the permission for that one-a-day treat!

Jennifer -- thanks so much for your message! I am so glad to hear that you have some help with your twins -- you would need that even if Andrew didn't have his special needs! Good for you for taking that hour to yourself. As you say, even if you simply retreat to your room, it is a respite!

I felt really sad when I read about your experiences with friends -- the ones who 'do' or 'don't' acknowledge Andrew. My son is so much older and I thought about it in terms of when we have get-togethers sometimes with friends or family and I kind of feel like Ben is the elephant in the room (in the sense that everyone is very nice, but they don't typically take the time to engage Ben in a way that's meaningful for him). He sits on the periphery.

But to think that people would not acknowledge a darling baby/toddler is really hard to imagine.

I get that for some people our experience is so foreign that they don't know what to say. But I wish people would reach out to understand better, to ask how they could interact with our child or how they could support us, or to simply listen to our story, knowing it is full of both joy and challenge.

If you ever feel like writing (not that you have any time!), it would be wonderful to have you do a guest blog for us on your friends' responses to Andrew. And I would imagine this is heightened because perhaps they have different reactions to Eleanor?

I know for me, and I can imagine for many of our readers, that one of the most painful things when your child is born with a disability is when some people can't delight in/see who they are as people.

Hi Ann -- great insights you have shared. It is wonderful to hear about the support you have online.

I too have found that work outside the home helps balance me. Your running/raising funds for CMD sounds fabulous. I am going to check out the link on your respite foundation.

Thank you for sharing what you've learned!

Hmm. Lots to think about, Louise.

Everything takes TIME. Friendships take time to nurture, exercise takes time, Bible reading and solitude take time... It all takes time that is so limited. I never appreciated before this experience of special needs parenting just how much time it takes--WAY over and beyond the time it takes with typical kids (and yet we feel we have to designate extra "sibling-time" beyond what we might have done were special needs not on our plate, to keep them from feeling jilted). I agree with other parents here that the typical parent cannot grasp the time or mental fatigue we deal with. It truly is outside the realm of "average" parenting.

I love my special needs friends. Since they are living the same life, we can pick up where we left off without that same intense investment of time. They understand why we can't drop everything and head out to coffee. But we can pick up the phone after months of silence and jump right back in on our friendship.

It's so hard to fit in exercise, especially because my daughter's disabilities make it difficult to include her. However, I'm really fortunate with my husband's weird work schedule. He's gone from home by 4 am, so I'll stay up after he leaves and read my Bible and pray and get in my hour on the treadmill before the kids get up at 6:00. I realize this doesn't work for everyone, but it's a great way for me to take advantage of a strange schedule.

An important topic!

For the past three years, I've been part of a non-audition community choir. On Wednesday nights, I spend 90 minutes singing with a group of 60 people--everything from Les Mis, to Rent, to Bridge Over Troubled Water. Singing with a group is joyful, soulfood. Plus it's a great social night out.

Pick something you've always wanted to do and make it happen. Write it on the calendar. Get childcare if you need it. Happier parents means happier kids.

Rose-Marie -- At 4 am????

I'm glad that works for you :)

I think you're right about how crunched for time parents of kids with disabilities are!

Thanks Amy for sharing. It's the making it happen part that I find hard, but I remember you talked before about taking baby steps.Glad to hear of your choir!

The best is when friends withf typically developing children decide to complain to me how they have no time... if they onlyknew what life was like with a special needs child... rushing to have dinner to get to hockey practise would be a holiday... my friends have no idea whats involved to raise a special needs child, bc I hate to complain about the extra work... so really I shouldnt complain about friends comments bc they just dont know... but I think bc I know im on a diff planet I am definitely not tring my hardest to nurture our friendships... no time!