Wednesday, July 31, 2013

Shoes Are Ableist


All five years of her little life, Kimani has preferred to go barefoot. She will not stand for having shoes on unless she is actually using her feet for walking. Once she stops walking, the shoes come off.

Turns out, this is a problem. It is a BEHAVIOR problem that needs to be formally and legally documented as such:


Almost everything (other than her taking off her shoes) on that document is bullcrap. The medication effect, the clapping, the escapism; all conjecture.

I called the school psychologist and we talked. I explained that shoe wearing, although deeply ingrained in our culture, is not natural and so not wanting to wear shoes is really not a behavior but in fact a preference for remaining in one’s natural state of being. I said that based on this there really is no reason for a legal "plan of action" for putting her shoes back on when she needs to use them.

She conceded that this is true but that there are RULES and that Kimani’s non-conformist behavior (I shit you not, she used that word) is affecting her ability to learn, and that of the other students because she requires extra adult attention to get her shoes back on. Then she explained that she is only following the State Department of Education regulations. Regulations defined by laws, and rules and codes... and now Kimani's bare feet have become a legal behavior problem that interferes with her education.

And it is not just bare feet... they added two other behaviors to a plan that we reluctantly agreed to this time last year. She puts everything in her mouth, even bad stuff, so we agreed that it was a safety issue and went ahead with the whole Functional Behavior Assessment process, and look where it got us. She still mouths everything and now has three more behaviors that are working their way into her permanent legal record. In case you are curious the other two are "dropping" instead of walking when they want her to and dumping toys/clearing spaces off.

I asked what they might add next, spitting food or grabbing other children’s food? And she said “Yes, that too, we could add those too if you want.” Ha ha ha, if I want. No I don’t freaking want. She totally missed my point. Kimani is one total non-conformist person who without protection from the system that is trying to help her will end up locked in a box.

I feel like her whole future is on the line with what we allow concerning these things... her access to the least restrictive environment, her legal rights and freedoms, and the path her education will take. She is headed to that place, the one that only some parents and some administrators, and some teachers and some aides know about. And I will be damned before I let that happen to her.

My first thought was that I am going to have to homeschool her. That is so not me :-( Guess I better see what all is involved in that solution.

If you homeschool a child with disability, pipe up and encourage me. Tell me how you do it.

Monday, July 29, 2013

Change (Part 1)

Change, when it comes to people, happens every second of the day and is inevitable. And I would assert that humans are the most common and powerful agents of change there are, on themselves and on each other. Going a step further, parents are the most influential players shaping the changes occurring in children.

tkWhether we like it or not, we decide everything for them in the beginning. Remember breast vs. bottle? And it goes on from there. We make those choices with love and determination, a kind of thoughtfulness that looks at the present and into the future. We choose their playmates, their schools, their extra activities, where they live, what kinds of food they eat, what they are exposed to both physically and mentally; all with the hope that our choices will somehow help our children to become whatever our personal idea of a good (well-adjusted, successful, insert your own word here) grown-up is.

Now, when we talk about trying to change someone we need to break that down into smaller chunks. Like are we talking change as in having a big ole’ strawberry birthmark removed from the middle of your baby’s face? Or are we talking about not feeding the boys Froot Loops for breakfast, lunch and dinner every day because it isn’t nutritious for them? Or is it purchasing the braces the orthodontist recommended or not buying the Nerf gun because you don’t let your kids play with weapons?

Am I getting where I am trying to go? Do you see the difference between change and change, and change? Change for the sake of beauty, health, academic success, personal beliefs, or... Do you see the difference between change that is orchestrated and change that is incidental? Do you see how intertwined it all can be?

Those changes that we (and others) introduce constantly to our children create the physical and psychological structure of their body and mind, and the meaning they attach to themselves and their world—in most cases for their lifetime. We give them the world we want them to have and we teach them how to understand it. We help build their multifarious skill sets and their schema for filtering life.

We change our children, that is what we do. There is no getting around it.

And it is ok. Because if you didn’t change your children—just imagine you were magical and had that choice—you’d be a crappy parent. (Of course if you change them for the worse because you suck at being a decent human, then that too makes you a crappy parent.)

So when we talk about changing our children, maybe what we mean is that we are trying to figure out when or how it is ok to change them more, or less, or in different ways than the prescribed cultural norm, or the counter-cultural norm, or the norm you think is the norm. When you have a child who is born outside that imaginary norm, the questions surrounding change become even more complex and more confusing.

Even when you have a baby with a difference like say, Down syndrome, you still exert change on that baby every day of its life. So the question becomes not if you will change your child, but why and how you will do it.

Sunday, July 28, 2013

If I Should Die

Or rather if my husband and I should die, what will happen to them?






That has been on my mind lately.

All the life insurance in the world can’t buy new parents.

Am I the only one struggling to come up with a plan in the event the worst happens?

Thursday, July 25, 2013

Five Years In


Kimani turned five years old in June. I measure my life in milestones like that. Another chunk completed, wrapped up, tied off with a birthday ribbon.


She has changed, noticeably, with this birthday. The baby Kimani, the toddler Kimani... is gone.

She has never had a haircut. As I brush it, I imagine that some of the soft golden hair on her head belongs to my infant girl.

She can say pretzel, no, out, help, yes, done, drink, bath, yogurt, and my personal favorite, mama. She can repeat several other words such as sauce (for applesauce), banana, puff, pop, more, down, cookie, cake, berry, and cheese.

(Prompting herself to say "cake”")

She will refuse a single pretzel and throw it back at you. She must have three. And Lord help you if you try to give her a broken one.

She loves to sit on the piano and will play it with her feet.


She has never been back in the hospital since being discharged at 4 months old.

She likes to chew on sticks, pinecones, dirt, and stones... and pretty much everything else she is not supposed to put in her mouth.


She hates to wear shoes and will take them off as fast as you can put them on her.

She watches Masha. She wants to be like Masha. She will pull me over to the swing that Masha uses. She touches the seat, tries to climb onto it. I help, she screams. We do this everyday until one day she lets it be put under her butt and with her feet still on the ground she wiggles back and forth, and then she yells no no no and stops. The next day we are back to just touching the swing. But she doesn’t give up the idea, and that is what counts.

She can see better than she used to, and the CVI hardly seems to affect her now.

(Don’t be fooled by how sweetly she is eating her cake... I have a camera that is faster than her throwing arm.)

She has superpowers and uses them for evil. No joke. She can spot a Starbucks’ logo from across the room and grab/throw/spill that latte without ever leaving the top of the piano. She can remove her shirt in less than 1.63 seconds while strapped in a highchair. She can escape shoes that are tightly buckled using the first notch without anyone seeing her do it. She can hit anyone seated anywhere at our huge dinner table with a mouthful of food that she has decided she doesn’t want to swallow.


She loves to watch the screen when I play Bejeweled or Candy Crush and will tell me to play more if I stop.

She is the biggest thing in my world. She challenges me to think on different levels. She makes me sad, gives me hope, scares the crap out of me, frustrates me, makes me ache with love, and drives me to do.

behind the fence

Thursday, July 18, 2013

The Hypocrisy of Inclusion?

I don’t think I have come across one parent of a child with Down syndrome that doesn’t wish for and fight for this:


Why? Why do you want your child side by side with typical peers? You can say you want it because it is your child’s right but I think if you search your heart you will find more reasons than that.

We say we want our children to have peer models. I hear it all the time when IEP season rolls around. We hope our children will learn from their peers, be encouraged by their peers, and make friends with their peers.

But, when science tells us that one day our kids might be able to be physiologically more like their typical peers, many of us insist we would never want to change our child. We love them the way they are and it is the world that needs to change to accommodate their differences.

And while I would agree that it is important that the world see people with disabilities as equally valuable human beings, I cannot buy into the idea that if I really love and accept my kids, I wouldn’t want therapies that might improve their overall health including their memory or processing speeds.

Why would I fight to have my kids spend their days playing and learning alongside typical children and then refuse to let them go that extra step of functioning like them? I am not looking for a cure for Down syndrome for my girls, but I would not deny them any proven, safe drug therapy that will level the playing field for them.

Agree? Disagree? Go ahead, have at it in the comments.

Wednesday, July 10, 2013

Sweet Steps

k_sideKimani’s life is a dance of few steps. She is angry with the choreographer, though she takes it out on me. For I am the one who fails at reading her mind. I am the one who feeds her unappetizing things, too slowly, at the wrong time of day. I am the one who puts her into or takes her out of her crib against her will. I am the one who drains the water from the tub and runs brushes through her tangles. I am the extension of herself that is uselessly out of her control.

As she gets bigger and stronger and more frustrated and impulsive, I get more desperate. I want answers. I want help. I want a fix. That’s right... I want my baby girl to be all better.

I fantasize about fetal stem cell therapy; a needle full of fresh master cells plunging into her spinal cord and releasing new life into her brain. I imagine those cells going to work, developing into whatever she needs. They replace what was eaten by the meningitis bacteria. They stand in for the ones that suffocated to death while her aorta was resectioned. Day after day she blooms into the Kimani she was born to be. I researched programs, pleaded with neurologists and insurance reps, wrote to foreign specialists, and nothing. Fetal stem cell therapy is just a dream.


The best the neurologist could do was offer us drugs, and even though I hated the idea, we tried them. First Concerta and then Adderall. Both had powerful (and negative) effects on her so we ended those trials. “One more idea.” the doctor insisted, “We can try X. It is in a whole different class of drugs.”

We started her on the Guanfacine the last week in June and within days I saw the first change. I was feeding her lunch and when I gave her her drink cup she sipped and then put in down on the tray. I tried to take it back and she grabbed it and held it on her tray. I was stunned. How it always works is that I hand her a drink, she sips, and then throws it or pushes it away. I have been working on having her keep her cup on her tray for years.

Then the other day she was standing next to me in the kitchen, holding on to my leg and she suddenly went into the bathroom. I asked her if she had to go potty and she did not scream no or try to get away. So I put her on and sure enough she immediately went poo. We celebrated with cookies and m & m’s. She was not even done with her ems-ems when she started to cry and ran back into the bathroom. I put her back on and she went again. I was giddy. Oh My God... she told me she had to go, she waited until she got on, she knows!

Yesterday though, yesterday she blew me away. I was cooking dinner and she was sitting by my feet bugging me for snacks. I accidentally knocked the phone off the counter and it hit her hand on its way down. She made an unusually big deal out of it, screaming her head off. Daddy consoled her and I retrieved the phone and put it on the charger on the other side of the counter. When she was done crying she got up and wandered over to the counter, looking up and around for something. I thought she was headed for the box of Triscuits but instead she reached up, grabbed the phone, and threw it across the room. My jaw dropped.

She got hurt. She knew what hurt her. She got mad at it. She remembered she was mad even after she cried for a while. She got even. SHE GOT EVEN. She decided to go after the phone. She was on a mission. She planned it and executed it. This is the very first time she has ever done anything that indicates a plan, a decision, an understanding of process. I am freaking crying just typing those words.

Most people with Ds do not struggle like Kimani because her difficulties are not directly linked to her extra chromosome. Yet just seeing how a drug can effect a person’s ability to tap into and control their own mind has made me wonder what therapies could potentially positively change outcomes for people with Ds? This is not science fiction; not some far off fantasy like master stem cell therapy. There are brilliant researchers out there right now searching for said therapies.

They can’t do it alone though. They need samples, thousands of samples. They need a Down syndrome bio bank and a patient registry. Below is a chart showing where Ds research stands in comparison to Autism and Cystic Fibrosis in the area of raw data/samples.


We can do this. We can bolster Down syndrome research by raising funds to support our researchers. We can participate by donating hair and blood samples and key information for a Down syndrome biobank and centralized patient registry. We can give researchers what they need to build the healthy future our children, and all people, deserve.

This August you will get the chance to be a part of it all. It’s coming. Are you ready? We are.


Monday, July 8, 2013

Unravel the Mysteries

I say that I want research to unravel all the mysteries of Down syndrome... why people with 47 chromosomes have certain higher health risks and other lower health risks than people with only 46... but then I picture a beautiful sweater with a tail of yarn being pulled and before my eyes it unravels and disappears. Queue my endless pondering of the physiological make up of humans... how their personalities might be connected to their physical selves.

My friend Becca over at The Bates Motel is hosting a blog hop and asking the question: What would you like to see research achieve for our kids in the near future? Top on my list is a cure for Alzheimer's disease. That is pretty much the only health-risk I fear now for my girls. People with Down syndrome are prone to early Alzheimer’s and in fact show physical signs of it in the brain as young as four months old.

In a nutshell, almost all people with Ds have brain changes characteristic of Alzheimer’s disease, yet only about 50% of them develop the symptoms of dementia. The 21st chromosome is responsible for making the chemical APP which turns into plaques that wrap around nerve cells in the brain. That plaque is the precursor to developing Alzheimer’s. So why don’t the other 50% of people with Ds develop the disease? Answer that question and you probably will have the cure.

gramI don’t just fear Alzheimer’s for my girls... I am afraid it will get my mother like it did her mother. I am afraid that one day it will come for me. I hate Alzheimer’s, hate what it did to my grandmother. It took her short-term memory. It took her processing speed. It took her independence. It took her desire to be alive.

If curing Alzheimer’s somehow led to early preventative drug therapies for people with Down syndrome that had concurrent effects on cognition which had effects on personality development, would I still want it? Yes, yes I would.

I refuse to trade my girls’ best possible health for some adorable personality traits that may or may not be tied to the continued unbridled activity of a third copy of the 21st chromosome on their brains. Who am I to say that because I love them as they are, they can never be allowed to change?

Check out these other posts on research and Down syndrome... especially The Ordinary Life of an Extraordinary Girl because she says it, OMG... she says it!

Wednesday, July 3, 2013

The Butt of the Joke

An online friend of mine posted a picture on her blog of her young daughter looking at the french fries she was about to eat. It was a cute picture. But someone came along and stole it. They put the title "cannibalism" on it and passed it around the Internet.

I felt sorry for my friend. I know how much it hurts. After all, I have three girls whose pictures betray their #1 disability... their low IQs. I know what it is like to worry that someone will take something that is precious to me and turn it into a retard joke.

What I don’t get, what I don’t understand is why the world allows it. There are moderators on every board where my friend’s daughter’s altered picture appeared. Those mods did not take it down when they saw it. The general public did not comment that the picture was hateful and unacceptable.

When will the disabled stop being the butt of the joke? Long gone are the days when someone could make a meme like that using a racial slur and have it remain posted anywhere for more than 30 seconds. Likewise, gay-bashing is well on its way out of style and it is doubtful you have to worry about a public space allowing your gay child to be strung up as the joke of the day. But the cognitively impaired are still fair game? Five year olds with Down syndrome are the final frontier of hurtful humor that we just can’t let go of? Why is that?

I know what you’re thinking. It is just a few mean creepy people doing stuff like this and who can stop mean creepy people? But it’s not. It is all of us, every one of us who says "retarded" as an insult. It is every one of us that uses its catch-all abbreviated cousin, "tard" for anything we don’t like. It is everyone of us that condones Ann Coulter and Bill Maher, and even Rachel Jeantel’s use of the r-word. It is every mod that doesn’t take down the insulting meme, and every one of us that turns away in silence after we see it.

We as a culture need to decide to stop insulting our disabled population. We need to refuse to accept them as the butt of the joke. We need to refuse to allow those on either side of the political aisle to get away with the r-bomb. We need to reach out to those around us and ask them not to say it, and to stick up for the disabled. Only then, only when you care as much as I do, will it end.

Only then will these beautiful faces be safe.