Not Jealous of You

This morning, while all five children—home from school on winter break—frolicked around and I tried to clear off a spot on the far side of my kitchen counter where I might fold laundry, Kimani jumped from the kitchen table to the counter and, in a split second, threw my bread machine onto the floor... smashing it.

I was so mad. I chastised her and promptly plopped her in her crib for a time out. And then I proceeded to attempt self-pity and tried to think of someone I could be jealous of... someone whose child does not daily earn the title of "The Master of Disaster."

No more fresh bread, damn it.

And the very first thing that popped into my mind was Kevin Carter’s Pulitzer prize-winning photo...



No, I cannot be jealous of that child’s mother.

But that didn’t stop me from wanting to feel like shit so I put the starving children of this world out of my mind and tried again. And images from Kimani’s school came crashing down on me... beautiful little girls just like her who cannot climb on tables and counters, who cannot walk into their mother’s arms...



"Ok," I said to myself, "it was just a bread machine" (this time). Despite the first tingles of guilt, I still whined to myself, "but couldn’t it be easier?"

Surely she could be like... surely I could be jealous of... think think think

I can’t show you pictures of what I saw then... a procession of little faces, Kimani's friends—some forever infants, some toddlers, some four year olds like her—all of whom break bread in Heaven now... each one I remember so clearly, and their mamas... each one so undeserving of the loss they suffered.

What the hell is a broken bread machine compared to that?

Her Contribution

I assumed that when Ellen posted, “Are People With Disabilities Contributing Members of Society?” she was referring to people like my Kimani, people whose disabilities will preclude them from gainful employment, and most any achievement or accomplishment that will somehow add value to our society... people who will likely need to be cared for physically and financially their whole lives.

First I ask you, what does it really mean to be a contributing member of society? How is a concept like that measured? By giving as much or more than you take out of some collective pie? Deciding who is a contributing member of society is a slippery slope if there ever was one but Ellen bravely concludes that people like Kimani do contribute to society,

People with disabilities are contributing members of society. They show us what really matters in life, what it means to be human, what it means to be loved and accepted simply for being, not because of what we can or cannot do.

I know where she was going with that. It is the same place I was trying to go when I wrote “Seeing in the Raw” for the HighCalling.org a year or so ago. Kimani is human, raw human and she is loved simply because she exists. She is lovable exactly as she is. But that has more to do with inherent value than it does actual contribution to something.

Aren’t they impossible to unravel... direct and indirect contributions to society? Very few people who make direct, valuable, measurable, lasting contributions to our society would claim there is no one who motivated them or affected their desire to do what it is they did.



And I think that is what Ellen meant, that people like Kimani contribute to society indirectly by influencing the people around them to be more compassionate, thankful, tolerant, and perhaps even drive them to adopt, research cures, donate time and money, and to develop policies and enact laws. Is the butterfly who flapped its wings any less of a contributor than the tsunami it caused?

No, Kimani does not change everyone who meets her. In fact, she will likely only have true impact on a very small circle of people. But who can measure what the currents from her little wings will bring forth? Who even has the right to try?

Ableism, Are We Guilty?

First off, for those who may not be familiar with the term ableism, it is a form of discrimination,

"A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human." - Cambell

By the way, I love that term, species-typical because after all, nobody is normal.

Where is the line between providing and supporting a child with Down syndrome (or any disability) with opportunities to develop in a healthy way and driving that child toward the species-typical model via therapies, drugs, surgery, and parental pressure? Sometimes I think the line is imaginary and crossing it is simply a matter of semantics and interpretation. Other times I know for sure it is real and I am sad to see it crossed.

At the edges of our communities, we are two camps divided... those that believe most any sort of intervention in the natural development of a child is an attempt to fix perceived deficiencies and those that live to brag about their child’s latest success on the continuum of normal. Is there an agreeable in between? And if our children could see their own futures on both trajectories, and could articulate their desires and fears... what would they tell us about the importance of achievement?

I have not taken any disabilities studies classes and thus my non-scholarly opinions on this topic are developed from experience with my girls, reading and thinking through the experiences of other parents in the Ds community, and exposure to a more-than-average amount of therapists and therapeutic opportunities... which is my polite way of saying I am just thinking out loud here.

When Kimani was born I, like most parents of a child with Down syndrome, was sure she was going to be THE Down syndrome rockstar... she was a beautiful infant and extra chromosome or not, she had smart bloodlines... How great she could have been we will never know because at 4 weeks old she contracted bacterial meningitis, and although I did not know it at the time, her gonna-be-a-rockstar days were over.

When we got home from the hospital (Kimani was 4 months old) Early Intervention began and I learned a whole lot about milestones, expectations, and therapy. By nature, I am a "why?" person so everything that was introduced to my daughter as part of her therapy, I questioned. The things that made sense to me, I allowed... the things that didn’t, I declined. What I realized was that some people approach therapy as a way to push children who are different closer to the, here we go with my new favorite term, species-typical model as fast as possible. Other therapies are designed to mitigate motor weaknesses that can lead to potential difficulties and unhealthy habits later on in life.

For example, Autumn has an aversion to using her right leg and putting weight on her right foot. I could view this as "that’s Autumn, that is the way she was made and being different is ok" or I could see it as something that should be addressed and give her the therapy she requires to correct this so that when she is older she will not have potential arch pain or hip pain due to how her body naturally compensates for this. I chose the therapy. Now if someone told me that they wanted to use Theratogs on Autumn as a way to make her walk at a younger age, I would have said no because I didn’t care when she was going to finally walk on her own... but if the Theratogs will prevent potential hazards for her in the future... like falling down a lot, then heck yeah, we are going to do it.

I think that most parents of children with disabilities start out (unknowingly) as ableists but grow out of it—in degrees—as their children develop and they realize that being different is ok. The only times that being different needs to be questioned, and addressed, is when it has the potential to cause harm to the child now or in their future.

Childhood is not a race to a perfected version of being human... not for kids with different abilities and not for typical children. It is a time of innocence, joy, learning, and growing. I like it when my friends celebrate those things about their children and my children, as long as the value of the celebration is simply on the child, not on some underlying comparison chart to other children.

So as with most things, when it comes to ableism and achievement, you need to ask yourself, "Why are we doing this?" If your answer doesn’t fit the definition of ableism, then someday your child will probably be thankful that you did it.

 

Lisa from Life As I Know It is hosting a blog hop so if you have some thoughts on this topic or just want to read more, check out the links below or add your own.

Compliance and Special Needs

A while back a close friend asked me if I fear that my girls will be sexually abused because their disabilities make them easy targets. The answer of course is Yes. The statistics on this topic wholeheartedly agree, and that sickens and terrifies me.

But I told her that of all my children (and honestly I fear abuse of my typical children as well) the one I worry about the least is Kimani. While she might seem like the easiest target of all, really she would be the hardest for a predator to take advantage of. Kimani is not compliant... not physically or mentally. If you tried to get to her in that way she would fight you like a wild cat, and she would scream like one too. I know this because even I, her beloved mother, can’t get a good look at her girly parts when I need to without enlisting the help of daddy. And Kimani cannot be manipulated with promises or threats... you cannot talk her into anything.

Now ya’ll know Kimani is getting big and strong but isn’t mentally developing anywhere near the speed of her body... which means that her non-compliance and impulsive behavior is getting harder and harder for us to handle. She is always a one-on-one and often a two-on-one kid and can never be left unattended for any length of time, unless she is in something she cannot get out of, like a highchair.

I want to take her to Boston to the group of pediatric neurologists there that specialize in post-meningitis brain injury but in order to get this approved by our insurance I have to jump through hoops locally to show that no one here can help her. The local ped neuro we met with prescribed an MRI and a daily dose of Concerta. Huh, it never occurred to me to drug her but I have done extensive research on Concerta and I could see how maybe this would help to calm her and give her what she needs to control her impulses. After thinking it over, I developed a fantasy where on Concerta she would be able to focus and learn, and maybe even go to our public school in their special education K-2nd grade room. I daydreamed that on Concerta, Summer would become like Autumn.

I filled the script and we tried it out. It was a liquid, and so yeah even hidden in stuff she likes, she spit it out. Then, even more well hidden, she spit it up moments later. But some of it took hold and she was different that day. She was subdued but clingy and she cried for me whenever I left her sight. I told myself that she hadn’t had the correct dose and that maybe she was kind of sick and suffering from a general malaise due to an illness... not the Concerta. I went to the doctor and got a script for the pill form and tried again. I had to come clean with her teachers and school nurse because one of the side affects of Concerta is loss of appetite and between that and a bout of diarrhea they thought she was sick and called me in to pick her up. During the discussion about how she was acting on it at school, her teacher said something like, "Is it worth it if she is no longer herself?"

Wow, just freaking wow. No, no it isn’t worth it. Especially after reading a post that blew me away about teaching our children with special needs to be compliant. Do I really want a little girl who will do whatever she is told by whoever tells her to do it? Am I raising my girls to be vulnerable because I am training them to do as they are told, no matter their own feelings about it?

There is a ton of societal pressure on parents to make their children with special needs compliant in order for them to be included in their communities (schools, extra-curricular activities, church, etc.) In fact I would guess that non-compliance is the number one reason why most kids with SN end up in self-contained classrooms or are asked to leave certain public spaces. And I do get it, I understand that Masha needs to go with the program if she is going to make it in a Gen Ed classroom... but at the same time it is likely that she may never be able to discern which authority figures (and for her that may be any adult or older child) not to comply with... even when it hurts.

So how do you raise well-behaved special needs children who may grow up to be too naive to protect their own bodies, possessions, or mental well-being? I have some ideas but not enough.

My kids are not forced to share everything. In fact they have things that are only theirs and I make it a point to tell them not to share those things. For now it is stuff like their drinking cups (my kids are color coded so they each have their own color cup) and certain pieces of jewelry. I also never force or even overly encourage my kids to show affection to anyone, including me. Heck, I waited almost four years for a kiss from Kimani and I would wait four more if she so chose.

But the most important one of all is that sometimes I allow a standoff between us. If one of my girls draws a battle line in the sand, I do not always cross it and win the fight. Sometimes I let their will be done because they need to know that their will matters even if they don’t have the vocabulary to defend it.

But Kimani... she doesn’t know what color your cup is, whose bracelet is whose, or if you brought a tank to the battle—so unless her safety dictates otherwise—she impulsively rules her universe... and I have no inking whatsoever what to do about it. One thing I do know is that I would rather deal with Kimzilla than turn her into more of a target than she already is.

Authenticity and Vulnerability

I didn’t write that post yesterday to invite ego stroking (though I admit it was nice to hear from so many people that you give a hoot what I have to say.) I wrote it because I was really struggling with how honest and vulnerable I am willing to get in my writing. Because there are consequences that come with being authentic and sharing the real deal.

While the comments I received here and on FB were encouraging, one of them was a game changer. It came from an IRL reader who I went to grade school with. I wish she and I lived close enough for coffee dates because while she was cool in school (heh heh) she grew up to be even cooler and has had more than her fair share of grief and life experience. She directed me to a blogger named Brené Brown who writes a blog called Ordinary Courage. My friend suggested I watch a video, and I did.

That was it, that was all it took to know that I can overcome my fears (and an unhealthy dose of shame) to step off the cliff and be authentic and vulnerable. It’s not like I won’t lighten things up with a cake pop post here and there but I believe it is time for me to dig deeper into my heart and mind and let the b-side of me out of her cage.

Just promise me that if you are going to stick around for it that you will be gentle me :-) Oh, yeah and those of you who know me IRL, just pretend someone else has appropriated this blog. Deal?

It Is So Hard to Keep It Real

Last night I wrote a post about the days when I was not an ok mom (prompted by an excellent post on Gillian's blog.) It was an honest post that described my struggles to overcome rageful reactions to ordinary kid stuff that my kids do. It was the kind of post that might touch someone out there who needs to hear that she is not alone, that there is hope, and that change is possible.

But I did not end up posting it. I may never post it. In fact as I read through my posts of late (the past year or so) I wonder if I will ever post real stuff that matters ever again... because too many people I know IRL read this blog (ahem, not that you would ever know that by the comments or rather lack there of.)

I struggle as a mom. I have body image issues. I am sad about my daughter Kimani... it twists my heart and mind. I have not-so-nice but true and rather funny opinions of some people around me and in my virtual world. I am seriously no longer convinced about God. I hate being a SAHM. I miss the freedom to travel. My husband doesn’t get enough sex. I am often tired of being me now and ache to be me then. I am conflicted about abortion. You get the idea.

But if I step off the cliff and write about all that, what does it really matter and in the long run it will only hurt me. When I go to publish my nonfiction book about parenting infants with Down syndrome, people will say, "That is the same woman who writes all that awful crap on her blog." When I try to set up playdates for my kids the moms will remember what I have written here and think maybe they don’t want their kids around her kids. I have already lost much of my Christian readership and would likely lose the rest.

Why blog anymore? I don’t know. There must be a reason I still feel drawn to write the truth as I see it.

Gecko Scores

My 9 year old son Gecko plays on a premier soccer club team. He is one of the youngest and most developing kids on the U10 (boys born in ’02 & ‘03) team. He is also one of the smaller kids, though surprisingly not the smallest. But he is built for soccer. He is fast, agile, and aggressive and for the most part he holds his own.



For some reason though, he doesn’t shoot for goals. He plays forward or midfielder and he does great getting the ball and moving it, but when he gets close he just doesn’t take the shot. I chalk this up to focus (too focused on controlling the ball to plan for a strike and not focused enough on where exactly he is and what the goal opportunities look like ahead of him) and perhaps even a bit of uncoordinated motor planning (the switch from controlling it to actually shooting it).



I am not some crazed soccer mom who lives and dies for her kid to be the best, to be the star but I know that for his sake he needs to take that next step and start taking goal shots. I have been subtly mentioning it to him and when it comes up he tells me he prefers defense. And so I leave it alone hoping that by the end of this first year he develops to the point where he wants it.



Last Sunday when I did a little birthday shopping for myself at the Pandora store, he was with me. He goes there often with his dad to pick out my special occasion gifts and he enjoys looking at and picking out the beads he thinks I might like. As we were eying the lovely baubles in the glass cases, he said, "Mom, don’t you have a football? Maybe they have a soccer ball."

The sales lady was quick to tell us there is a soccer ball bead and to pull out the tray that it sits on. I smiled at Gecko, "I do have a football bead. And when you score your first goal, I will buy that beautiful soccer ball bead to celebrate it." He smiled right back at me and said, "Ok mom."

On Wednesday (the very next practice) the boys played against themselves, and lo and behold, Gecko scored not one but two goals. The minute he got home he yelled to me, "Guess what mom? We can go back to Pandora now." I was very excited for him and proud of him.

But later that night I wondered about it. When your children are really little, you know them so well. You know what each of their cries means, you know everywhere they go, everyone they see, all the things they care about... but then they begin to grow up and away from you. They have crushes you don’t know about, thoughts they don’t share, friends and enemies at school you don’t know. They have fears and desires that you are not privy to. Was it a coincidence that he scored those goals the very next time he was on the field? Or is he that motivated to please me/make me proud? Is that a good thing? Was it to show that he loves me or does it mean he feels like he needs to measure up?

Today he came home late from his game. He walked into the kitchen with a little Pandora bag in his hand and a wide grin. As he handed it to me he excitedly told me that he took a goal shot during the game but "the goalie just barely got it!"

That little silver and enamel soccer ball charm on my bracelet means a lot to me. While it won’t give up the secret of why he wanted it so bad, it reminds me that my boy is superstar to me.