Tuesday, September 13, 2016

Why do special-needs parents never feel 'good enough?'

By Louise Kinross

Yesterday Boston-based author Susan Senator posted a piece about the chronic inadequacy that can trouble parents raising children with disabilities.

In If I Were A Good Mother she details a long list of all of the things she could do, or could have done, to improve her son Nat's life (Susan has written for BLOOM and is the author of three books about parenting children with autism).

I'm sure if we randomly picked 20 parents of older or adult children with disabilities, sat them in a room, and asked them to write what they "wish they'd done differently," they would each produce an elaborate and, to the outsider's eye, bizarre list. It would be full of unrealistic expectations, magical thinking and a whole lot of self-condemnation.

Here are some of the things on Susan's list:

She'd read to her son everyday, constantly engage him, type with him on Facebook, and be happy and not frustrated with any progress, no matter how minute. In addition, she would have signed him up for therapeutic horse riding years ago, instead of recently, researched a shared living program everyone raves about, and looked into five day programs before choosing the one she did. Finally, she would have known that his unhappiness, weight loss and other physical symptoms while living in the community earlier this year were signs of physical abuse.

Nat has autism and is in his 20s. He returned home in the summer after it was discovered that he had been physically abused while living in an apartment, with support, and going to work and a day program. He had fractured ribs and bruises.

It was painful to read Susan's post because I could see myself, and almost every other mother of a child with a disability, in it. The questioning about choices made, long past and present, the self-doubt, the desire to work round-the-clock, in the interest of your child. And how that meets with the reality of our humanness, leading us to feel like we're not the parent we'd like to be.

It reminded me of some comments Samadhi Mora-Severino made in BLOOM 's new A Family Like Mine video: "As parents we internalize a lot of guilt and we internalize a lot of... [It's] almost like we failed as a parent because we have a child who's disabled. And I think we need to be a little critical on how society has situated what is the ideal child to have and what is not the ideal child to have." 

At the end of Susan's piece, she sums up why she feels so conflicted: "If I were a good mother, I would know how to parent Nat and I would have the endless energy and wisdom to follow through."

For parents of kids with significant and multiple disabilities, there is no "right" or "known" way to parent our kids. Parenting children with multiple disabilities is not like parenting kids with no disabilities. Applying the identical parenting techniques will not produce the same results. 

This reminded me of an interview I did with scientist Lucy Lach, an associate professor in the School of Social Work at McGill University and co-principal investigator on a research project called Parenting Matters. One of the Parenting Matters projects is a clinical study of 263 Canadian children with various disabilities. Parents completed measures about the complexity of their child's disability, their behaviour, quality of life, family environment and many other variables.

This finding stopped me in my tracks. "We learned that parents who have a child with a neuro-disability don't differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child," Lucy told me. "The downside is that they experience themselves as more ineffective as a parent."

Bingo! Suddenly I saw my own feelings of inadequacy as part of a larger social picture. That the way disability is viewed in society sets special-needs parents up to never, ever feel good enough.

Lucy said we parents feel less effective because of expectations we have for ourselves and our child. "There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there's the actual transaction that happens on the ground. One informs the other."

When I first saw Susan's blog post, it was posted on her Facebook page, and there were more than two dozen comments. Many like this: "I always feel this way. Like I'm not doing enough or being enough...or if I had just read to him more, or if I had more patience before gymnastics tonight and didn't yell at him through clenched teeth to get in the car..."

And "Oh my. This is me in my head all the time. All. The. Time. I feel like I could write my own version of this."

And that made me so sad. So very sad. 

We need to do some research on this topic so we can better educate parents about feelings of inadequacy. They are to be expected in a society that holds such rigid concepts of human value. And they are not, in general, a reflection of anything a parent has or hasn't done.


Gosh, this is SUCH an important topic - thank you for introducing it, Louise.

I was a 'barely good enough' mom with my eldest (typically developing) two. I dragged them around with me a lot, didn't helicopter...and as adults, they are independent, strong willed and creative, in spite (?) of my mothering.

With Aaron, my son with Down syndrome, I've had to learn how to mother all over again. As nurse researcher Gwen Rempel says, we are 'ordinary people doing extraordinary parenting.' There's microscopes everywhere, and I always painfully feel as if my boy's behaviour reflects on my mothering skills. Is this me with my own shame? Or is it my need for him be the 'best kid with Down syndrome ever' just to prove the world - which is so against him - wrong? Either way, there's so much anxiety, especially in public, at school, with extended family...always second guessing my decisions...

We are just all doing the best we can. And we need to be as kind to ourselves as we are to others. But motherhood in general is hard work, and so unsupported. I'm happy for places like BLOOM where we can tell our truths. xo.

It becomes the responsibility of most children to handle most facets of life once they become adults. For those who have certain disabilities , that cannot happen. So the most important thing s parent can do for such disabled children is to watch out for them and find trustworthy, responsible people to also do so. It's the big fear for such parents because it's so difficult to find anyone to do this. Also it's difficult enough of a thing to look after another person especially when they become adults, and for some, preparation for adulthood and responsibilities does not have positive outcomes.

I hang my head in shame and cry every day. My beautiful budda boy, was born 25 years ago with severe brain damage, which causes him to have uncontrollable seizures, which causes severe retardation. Aganist recomendations from the official medical people, I chose to take him home and love him. At 25, he is nonverbal, wears diapers, dances, treads water gives love and two seconds later, kick your ass. He stands a beautiful 5'10", 220 lbs. I'm 5'4" 140 lbs. He hs Many accomplishments. I believe he could be SOO much farther. I believe he has outgrown me. I no longer have the patience, to do this until I die. As parents, we sometimes (ha ha) do to much for our kids. Help To much. I would love to see my guy be able to live independantly with a roomie, and 24 hr staff. Then my guy will shine again! His father blocks me and wont agree. As well as he refuses to administer cannibus for his seizures. My shame comes from not being able to give my son what I believe is the best for him. The tears are for me, knowing I will die caring for my baby who desevers better. Thanks for listening

Hi Laurie -- thank you for posting.

I think we parents have a habit of focusing on what we still wish our kids would do, and we forget how far they have come (I know I do this!) Do you have respite workers who are able to take your son out in the community? What does your son enjoy? (besides dancing and treading water!) I know it is really challenging when family members have different ideas about what is best for a child. Are there options for the kind of supportive housing you're looking for? It sounds like you have done the absolute best that you can for your son. I know cannibus has been very helpful for some people with seizures. And I know what it's like to do too much for our kids. Thanks for writing and keep in touch!