Thursday, November 3, 2011

Resting in that grey area

Some of you noticed that I deleted a post I wrote last weekend.

I had wanted to share something going on in our lives -- from Ben's perspective -- without getting into a lot of detail.

But because I felt compelled to respond to comments, I wrote more than I was comfortable with. I felt I had to defend my choices.

It got me thinking about how there is no one "right" way to parent a child -- with or without disabilities. Our children and families are too unique to benefit from cookie-cutter solutions.

But sometimes within the parenting community -- and within the special-needs community in particular -- we make judgements about other parents' choices and decisions. We take black and white positions and say there is only one way to parent, and if you're not doing it this way, you're not doing what's best for your kid. Maybe it's breastfeeding, or the language you use to describe disability, or maybe it's about inclusion, schooling, the amount and type of therapy you've got for your child, or where your adult son or daughter lives.

There are so many issues that can divide us, make us feel inadequate, when what we really need is support.

It helps to remember that we can never fully know another parent's or family's reality.

"Even when I think I understand what it's like to be a parent of special-needs children, I can only walk in my shoes, on my mountain and explain my view from here" wrote daddy blogger Tim Gort on Hopeful Parents last week

And as author and parent Amy Baskin writes: "Hang with people who make you feel good. Who don’t judge. Special-needs parenting is not a contest. You and your kids do the best you can."


So hard, finding the right balance! And you're in an especially challenging position, blogging on both personal and professional matters for an institution.

For what it's worth, I thought your last post was entirely relevant - and if allowed to stay may have generated highly interesting and productive conversation. But even if it wasn't (relevant), does it deserve to be heckled? I don't think so. Readers so inclined should choose to move on or comment constructively.

To be honest, I would have liked to see the comments posted - often they speak for themselves and don't need response. We've all just missed an opportunity to discuss and learn about something important.

Louise... What I love and admire about this great blog you've created is the honesty and introspection you spill out and share with me. It lets me know that I'm not alone in dealing with all of life's complications which I believe are doubly challenging when trying to balance the special needs of each family member. The world is absolutely not black and white and we, as parents of children with different abilities, ought to know this better than anyone.

Thanks Jennifer.

I don't feel I was being heckled. But that my integrity was being questioned and it was being suggested that I was exploiting one of my children by writing about them.

I do feel there are certain topics within the disability community that are somewhat 'taboo.' For example, parents may be judged if their child participates in segregated vs. mainstream activities.

While my son had a negative experience in a segregated school, I have a friend whose daughter is now thriving in the same school.

The topic of group homes is another one people like to steer clear of.

As you say, I believe we need open discussion about these topics. What is helpful for one child or family may not be helpful for another.

Louise, there are no right or wrong answers we make when raising children....especially special needs ones.

We make decisions out of pure love and the information we have at the time. Nobody should ever judge another or have our motives questioned.

I remember when Savannah was alive, so many parents we carrying on about how children get rid of binkies by age 2. In hindsight, who really cares. I know Savannah had her's until she could no longer hold it in her mouth due to her terminal disease and her disabilites. If she were still alive, I'd still let her use it as it brought her so much comfort. Who is anyone to judge that??

I think people lose sight of the bigger picture and that our kids are just kids for a very short time and we as parents do what we have to do...especially the parents of a special needs child.

Sending you a hug Louise,

Diana x

If there is anything I have learned from this journey, it is not to judge. All of us are doing the best we can with the circumstances we've been given. Your comment about there not being one cookie cutter solution is dead on.

Louise, I'm wishing I would have read your post now. I'm going to give a speech on inclusion in two weeks I hope to inspire many but I know it's a choice I made for my daughter but not everyone would follow this path..and there are options. I wouldn't want to be upsetting anyone with my message.

Thank you Diana!

Thanks for sharing that story about Savannah and the 'Binkie.' I know what you mean -- people treat certain parenting decisions as 'life or death' -- I had a similar experience when Ben was 18 months and still adored his bottle. I was told I 'had' to get him off the bottle -- for many reasons, including because he had such bad ear infections.

It was so horrible taking that away from him. At that age he had words and word approximations and he would say: "Ben go bo" for Ben go bottle.

I remember feeling so guilty for taking it away from him, and also guilty that in letting him have it until 18 months I had done something "wrong" -- something that had contributed to his ear infections.

Years later, a specialist put a video scope down his nose and told us he had structurally different ear canals. He diagnosed a submucous cleft palate and a type of structural problem in the ears that goes with it. He laughed when I told him I thought I'd done something to cause the ear infections and kept pointing to the screen -- the evidence -- to convince me.

I also remember another professional saying at the same age: "He should be making choices by now" and feeling like I was in this crazy race to make my child 'perform' the way he was supposed to.

And all the time it took away from just delighting in the wonderful little boy he was.

I'm so glad you gave Savannah the comfort she needed and deserved. xo

Thank you for your message accidental expert. I am grateful for the honesty with which you share your journey on your blog.

My blog made reference to our finding residential care for one of our teenage daughters. I know that you know that a parent would never come to a decision like that without agonizing over it and trying every possible alternative.

Hi Sherry -- My post wasn't about school inclusion.

But I feel inclusion can be one of those 'divisive' topics -- because families who live in boards that don't offer it feel caught between a rock and a hard place.

I also feel that in some places it is done really well, and in other places kids are parachuted into regular classes with no additional resources and teachers who don't have the training/knowledge/supports they need.

Some parents have had bad experiences with inclusion because the resources were never there to make it successful (not because it isn't a valuable goal).

Families are always dealing with the 'real' world: weighing the pros and cons of what specialized schools vs. regular ones in their area offer. They don't have the luxury of saying 'I want my child in an inclusive environment with significant supports" because those two things don't often come together.

I feel like my son is in the best of both worlds now because he's in a regular school but also has some teachers who specialize in working with kids with hearing loss who use sign language. But I know many 'inclusion' advocates would say this isn't 'true' inclusion and is less than ideal.

That's what I mean about how parents can be made to feel like they can't win no matter what they do. I think every child and family is unique and has to make decisions based on the options in front of them, their own resources, and trial and error.

I'd love to hear more about your talk. Where are you speaking???

As always Louise you encourage us all to look into our hearts a little bit harder and a little bit deeper.

Are we being honest with ourselves? Are we putting up barriers or dissolving them? Are we making the circle bigger, as I am always asking others to do, or are we actually creating our own circle and letting only some 'right' people enter.

It's always good to look at ourselves first, isn't it? And when we take a good long look maybe it will open our hearts and help us realize we are all making our own way and trying to find our own path. Different, but not wrong.

Love that last quote by Amy Baskin. Just remember that 99% of us (we are the 99%....) love your blog and what you say. Try to ignore the 1%, don't let them ruin it.

Hi Louise,

I can't imagine what it is like to be a parent or what it is like to be a parent to Ben. You are a great mom and doing what you can, with what you have, you should never feel judged for that. You know how I know all those things about therapy, ear infections and speech don't matter, when Ben asks for you or about you, he doesn't mention them or remember them. He just signs 'where's mom, is she good, should we call to get picked up?' All he cares about, is that your still there when he needs you. Try (and I know it's hard, because I get judged on things I do as a respite worker by strangers all the time) to not let people you don't really know bother you, you need to be focused on the ones that do know you, like your funny, handsome, curious and talented son.
I am going to try and make wings with him again.
And don't forget to laugh at him...Michelin man...because he is funny!