Respite

In the old days, respite was called Valium (and some days it still is) but now there are programs that actually send people to your house to give you a break so that you can cook dinner or maybe go to a dentist appointment. A few years ago we put Kimani on a list to receive respite services and then we pretty much forgot about it. Also about three years ago, I learned about a PCA (personal care assistant) program that provides you with someone to do task-based services with your child. I signed up for that too, hoping that one of these programs would come through for us.

Last July the PCA program administrators contacted me to set up a time to meet us. Kimani’s name had come up on the list. After interviewing me, and observing her, they determined that we could have three hours per evening. All we had to do was find an agency to manage the payroll and find our own PCA to do the work. Easier said than done, but I put the word out to a local college that has a special education teaching program and crossed my fingers that some student would be interested in this part time job.

Then about two months later, I got the news that Kimani qualified for an unheard of 20 hours of weekly respite and I did a hallelujah dance all around the kitchen. When the boogie ended, I wondered if she could actually have both services since they are both covered by her Medicaid waiver. After a quick call to the county, I found out that the answer was yes, as long as there was no overlap. The program coordinator brought the respite worker, Lexi, to our house to do the orientation, and the following Monday she started.

All in all, she maybe showed up four times over the next few weeks. She was consistently late and constantly a no-call, no-show. But she did show up just enough times to steal our iPad and a $50 check my son got for his 7th birthday. The program coordinator was apologetic and Lexi got fired, and we were once again without respite (and down an iPad which has caused havoc between our girls). But a couple weeks later they sent a new girl. She was pretty consistent and actually changed diapers and cooked lunch. In time I felt good enough about her to make appointments for myself. Unfortunately, it always seemed that the day I had something planned was a day she also had something come up and couldn’t come in. I realized that respite is great, but it is completely unreliable and planning on it is a fool’s game.

In November, the college resource paid off and we got the phone number of a student who was interested in the PCA position. After a couple weeks of paperwork and fingerprinting, she started work. Immediately all my girls fell in love with her. She has a younger brother with Down syndrome, and she knows exactly how to interact with the girls—high expectations, clear discipline, and an approach that sees nothing odd about them. Her name is Eva, and I hear it now all day long... Eva Eva Eva Eva... they love Eva. Eva’s job is harder than straight up respite. She has to prep Kimani for dinner, provide one-on-one support while she eats, potty her, bathe her, put cream on her, brush out her hair, brush her teeth, get her ready for bed... it is a lot especially with a little peanut who won’t cooperate most of the time. Eva does it all with a sweet gentleness that must be a personality gift.

In the beginning of January our respite worker mentioned that she was picking up another job, and that she would have to limit her hours with us. She dropped to once a week for two weeks and then was done. We immediately started the process of getting Eva a second job with the agency that provides the respite service but these things take time. So for now, we are once again without respite. Hopefully in a couple weeks Eva will be all set up and can work as many of the 41 combined hours as she wants.

I can’t even adequately explain how awesome it is to be able to cook dinner while my husband actually relaxes after his long workday, without worrying that Kimani is going to break something or get hurt. Having Eva lifts tons of stress. Of course since she is a college student, we are on borrowed time with her, but for now she is the best thing to happen for us in quite a while. I am already fantasizing that we could take her with us to Disney when we finally get enough points to go.

Kimani Lost a Tooth and I Lost my Baby

On January 4th Kimani lost her first baby tooth. It happened right before dinner. My husband was bringing her to her highchair when he mentioned that she had a tooth that was sticking up in an odd way, like maybe it was loose. I told him to hold her so I could have a look in there and just as I opened her mouth, a bottom front tooth fell out onto her lip. It is smaller and daintier than any of my other children’s, so reflective of her.

I wasn’t ready for this, not just because her teeth came in late and therefore in my mind would fall out late, but because she is still my baby. To me she is frozen in time, forever about 24 months old.

I know, Autumn is really the baby of the family... but she’s not. Autumn can talk, and count, and read Moo Baa La La La with me, and she can handle an iPad like nobody’s business. Autumn might still look like a baby, but she is actually an ordinary toddler with a rather deceptive baby face.

Kimani isn’t a baby anymore either, which this damn tooth on my desk proves.



So what now? It is hard to watch her body grow while the rest of her stays behind. It is hard to watch other children with her same extra chromosome move along intellectually while she still struggles with the basics of feeding herself with a fork.

She is this beautiful little girl with a whole lot on the inside that can’t make its way to the outside. And yet sometimes it seems as though there is nothing at all going on in there. It was easier when she was a baby because so much less was expected of her. Babies eat and poop and look cute, and she mastered that. Now, I feel like almost everyone who meets her and tries to interact with her ends up looking to me for answers, explanations, and excuses. I am the voice she doesn’t have.

When I plucked that tiny tooth off her lip, it struck me that she is growing up, without toothfairies or ABCs. Denial and I wanted to stuff that little thing back in her mouth but we couldn’t because in its spot was already the nub of an adult replacement.

Dumped from Hippotherapy

Two letters came in the mail, one for Masha and one for Kimani. Masha’s letter welcomed her back to the spring session of hippotherapy and invited us to set up her riding day/time...

The other letter informed us that "it has been determined that your child could benefit from a break at this time due to safety issues. You may reenroll at a later date if it is determined that Kimani is able to demonstrate safety necessary to be in the arena and on the horses."



I am crushed. This is a program designed for kids with special needs. Aside from pool therapy which ended with pre-K, this is the only therapy that Kimani has shown interest in and even clearly enjoyed. And she benefited greatly from it. We saw her begin to use her right hand, as well as begin talking again. She would get so excited when horse day arrived. She’d bring me her horseback-riding PECs card and her shoes. She would vocalize all the way to the barn and back.

I am angry. How dare they dump her because she requires more support, more effort on their part. This is not about safety but rather about her being a lot of work. She never did anything wrong toward the horses (other than try to eat their after-ride snacks). She never ran off in the arena. And though she sometimes leans to one side while on the horse, she never jumped off or threw herself off the horse. And how the heck are we supposed to “demonstrate safety necessary” if she has no horse to practice with?

Yes I am going to try to change their minds. Yes I am going to try to find another program. But damn, I am tired of fighting the “normal” system and now I have to fight for her in the “special needs” system too? And the reality is that she probably will not be able to get back into this program or any other hippotherapy program any time soon.

Unschooling Kimani

So remember back over the summer when I freaked out about the unexpected additions to Kimani’s school Behavior Plan and said I was thinking of homeschooling her? Well, I did it. I mean I am doing it. Sort of.

First off I have to say that I am super proud of myself for attempting this. I could have been a SAHM with no kids at home during the day which theoretically means I could be working out at the gym five days a week, planning and executing gourmet meals, finishing the book I have been writing for three years, or maybe just sleeping all day long. But instead, I traded in my freedom to give my precious Tasmanian devil a safe and happy Kindergarten year at the Mommy Academy of Table Dancers.



I suck at this. I knew I would. I told you I would. I bought a bunch of stuff to work from: the big Preschool lesson plan book, a bunch of manipulatives, and edible arts and crafts supplies. I managed (on the third try) to write an acceptable homeschool plan for our district and met with them to rework the IEP so that therapies could still happen. (That is not really working out, but it is a whole separate post.)

In September Kimani played along. We went bowling and grocery shopping with PECs cards. We went apple picking and visited a farm. We studied the color red and the math concept of One and Two. We dressed the weather froggy and painted pictures. We played on the iPad and read Moo Baa La La La. Sounds great right? Well it wasn’t great. It was tortuous because one of us is extremely, ahem, self-directed (okay, maybe we both are). By October she was not willing to play along at all for the things she doesn't care about.

She and I both learned a lot in that first month. She knows that two, when it comes to yummy things, is more desirable than one, and given the choice she will say, Two. She can now say apple. She can jump on her trampoline for long periods of time without holding on to the sides. She knows the difference between pink and red. She now knows that the grocery store gives away cookies to little girls and will say cookie as soon as we enter the store. Because her receptive learning ability is higher than her ability to express herself, these little milestones mean that she is really picking up quite a bit. I learned that she does not want to do anything schoolish. Put a puzzle together? NO! Draw a line (or heck, hold any writing utensil and make any marks at all) NO! Sit for any book other than Moo Baa La La La? NO! You get the idea.

I also learned that she loves to do things that are real, like cooking, shopping, or outings. She prefers playing with whipped cream over playdough. She prefers loud dance music or sitting on the piano and tapping the keys with her feet to playing with toy instruments. I learned that Kimani really understands the PECs system and wants to use it to communicate. I learned that she prefers unschooling to homeschooling. And so now, I am trying to incorporate pre-K level science, math, literacy, etc. into everyday activities that she is willing to participate in. Tomorrow a special education teacher is coming to visit. We might be adding an hour a week of consulting time to the IEP, depending on how impressive she is.



I also learned that while it does make me crazy to never have any alone time anymore, the trade off of getting her all to myself for hours on end is really cool. It has been a long, long times since she was my only child at home. Everyday I see advances albeit teensy tiny ones. Some days I am really encouraged that she is more educable than I had realized. Other days... well on other days, I try not to think about what this looks like in three or four years. One good or bad day at a time, right?

Daddy Heard Your Song Today

I watched daddy’s black car swing into the driveway, music blaring. It was your song playing on the radio. He waited it out, and though I couldn’t see through the tinted glass, I knew he was crying. He was crying over you Kimani.

How does one broken heart console another? Of all the things I have learned in the last five years, that one remains elusive. Instead I catch his sorrow and we cry together, standing outside in the rain, with the autumn wind flinging wet leaves against us.

If only we knew then in the hospital what we know now. If only we had pushed harder. If only we had insisted. If only we had not believed the nurse who said you were fine, when really you were seizing from the bacterial meningitis that was terrorizing your brain. If the antibiotics that came late that night had been administered 11 hours earlier, would you be a different little girl?

And what if I had stomped my foot down and never given in to letting you get that CV line in your groin? Would the hospital have really called Child Protective Services on me like they threatened to? Would one less brain insult have made a difference for you? Will I ever stop hating that doctor who pressured me into giving her permission to do it to you?

It was all life or death, honey. Every decision we made concerning you led to this life or no life for you.

If you could have seen your future, would you have consented to have your aorta resectioned? Did you visit with God while you were dead? Did he convince you that this life would be ok once they restarted the blood flow to your brain... bringing you back to life? Did he give you a choice in the matter?

I hope so Kimani. I would like to believe that you chose to stay with us, despite the life you would have here. Because that... that kind of feels like forgiveness, which is maybe what your parents need the most from you.

On Becoming a Monster

How does a good mom become the mother that kills her child and herself? With just a little research into the question, you find that mothers killing their non-infant children and themselves are a rarity. The reason why it happens is usually attributed to a severe mental illness (depression), guilt, and a desire to "save their child" from something.

There has been a lot said about the Kelli/Issy Stapleton case (if you haven’t heard about it, a married with three children, mid-forties mom attempted to kill herself and her 14 year old autistic daughter last week) but since I can’t shake my feelings about it, I have to write it out of me.

At first I really couldn’t sort out my own thoughts while being barraged with judgements and opinions on the situation... a system failure, a monster mother who should rot in prison, a child with disabilities who is perfect, a special ed teacher who "wrecked the plan", a child with acute autism who was violent and horrible to live with, a mother who was always fighting for her daughter.

Very few people have walked in Kelli Stapleton’s shoes (yet most people insist they don’t need to in order to judge her) but the majority of those who are walking in her shoes do not decide to kill themselves and their child. I think we can all agree that in her shoes or out of them, Kelli made the wrong choice, but I wonder... why did she come to believe it was the best choice?

What makes someone in Kelli’s situation turn to death as the solution? Death for her beloved child and death for herself.

My first thought would be the lack of a psychological and emotional support system. Yeah, she was a blogger, but who did she have in her inner circle that she could talk to about her deepest, scariest thoughts? Without someone to talk to, a suffering mother has only her own heartbreaking narrative in her head. People say she should have reached out for "help" but the truth is that is not possible. Had Kelli told anyone that she was thinking about killing herself and Issy, she would have been reported and admitted. She would have been judged and she might have lost all her children. Surely in her mind, that would have only made the situation worse. But that is what she needed most, someone to talk to about how bad she was feeling without the fear of her honesty being used against her.

My next thought was corrosion. Two constant forces ate away at Kelli’s ability to maintain a healthy view of the situation. Day after day, week after week... for about 12 years she worked with and against the system to try to help her child. Navigating the system is a roller coaster ride and as the main project manager, Kelli clearly was suffering from battle fatigue... in fact those are her own words. People have pointed out that she had finally gotten what the family needed for Issy... a personal care aide and six months of in-patient therapy but those things weren’t a cure-all for this family and sadly they were interventions that came too late. While Kelli was likely feeling a high from securing those wins, having her daughter rejected from school and being told she should home school her was certainly a burst to her hopes that life was going to get easier.

The second force was Issy herself. Kelli and her younger daughter were the main targets of Issy’s aggression. I’d like to say that I cannot imagine a child that difficult, but I kinda can. I have a littler, adorable version of Issy. My daughter is still manageable size-wise but she is well on her way to tearing up our family. For example, when Kimani is angry she seeks out Autumn so that she can pull her hair. When she is frustrated, she screams continuously until everyone around her is shaken up. What will it be like, I wonder, when I cannot just scoop her up and put her in a safe quiet place to chill her out? Will she still target Autumn when they are teenagers? Will she rip her hair out, bite her, kick her, punch her, throw her to the ground? What I don’t know is how it must feel to be attacked by a teenager every single day. Kelli said that Issy was a member of the "hard to love club" and I can see that. I can understand how over time having such a dysfunctional parent/child or sibling/sibling relationship could erode one’s ability to cope.

How could those forces have been ameliorated to avoid this trainwreck? For starters there should have been a whole-family behavior therapy plan with supports made available to this family back when it was first clear that their child was extremely aggressive and capable of great violence. There also should be a system coordinator available to a family that needs services of any sort, but particularly when the needs are this high. Long ago Kelli needed someone who was an expert at service coordination to help her through the paperwork and to show her what kinds of supports are out there. Don’t tell me she had that because I will tell you that’s bullshit. We have the Medicaid waiver for Kimani and a wonderful Medicaid service coordinator but I am still the one who has to do the majority of the workload finding what is available and running around/completing paperwork to get on lists to make it happen. And as for in-home behavior management help? Not all states have it, and even where they do the lists are so long that getting it is almost impossible. I know this because we are still waiting.

Am I blaming the victim here? No, no. Issy did not deserve to be hurt as a response to her disability. I am simply trying to understand how a caregiver’s perception of what is right can get skewed. Who knows what went on between mother and daughter in the couple of days between Issy’s discharge from the treatment center and Kelli’s attempted murder/suicide. But what we do know is that a horrible idea visited Kelli, probably not for the first time, and she bought into it.

Am I saying that what I wrote here is how the breakdown happened for Kelli? Again, no. I don’t know her. I am just working out in my head how a good mom to a child with severe aggression issues falls down through the years and loses her sanity concerning what is right for her and her loved ones.

So what am I saying then? That I get it. I am walking in shoes very much like the ones Kelli had on nine years ago. I can see how any person who loves someone like Issy or Kimani could over time deteriorate without good supports. I can see how someone could develop a very altered view of what is right, what is best. I can see how monsters are made. I wish that Kelli could have seen it too.

Kimani's Pre-K Graduation

This was supposed to be a post telling you all about Kimani’s first days of Kindergarten but once I got started writing it, I realized that we can’t go from Pre-K to Kindy without some fanfare and a pile of cute graduation pictures, right?

On Friday August 16th, Kimani graduated from Pre-K and I did not cry. Maybe I teared up a little, but no drops spilled over. Was that because she is my 5th kid graduating from Pre-K or was it because she will be attending Mommy Homeschool Kindergarten this year instead of going to the private self-contained program we had agreed to last spring? Or was it because they covered up her adorable graduation dress with an over-sized tie-dye t-shirt and I was too annoyed to cry? I don’t know, and I don’t care, the whole thing was simply too exciting to analyze.

Here she is making her entrance into the gym




First the kids sang for us. Sometimes Kimani was cooperative and participated.




Reaching for the stars her certificate. (A certain someone could have thought about how her cleavage was going to show up in the pictures, or who knows... maybe she did.)




Kimani’s idea of posing for mama, NOT.




What she really thinks of all this fussing




Getting congratulatory kisses




Making mommy clap for her. Those are Jade’s hands joining in.



I kinda wish Kimani could stay in Pre-K forever since there seems to be no better next step for her.

Horse Love

They call it hippotherapy, I call it horse love. Ever since I was a little girl, I have loved to ride and have wished for a pony. Growing up, my neighbor had one and that was almost good enough. Up on that pony with nothing but a bridle and my knees to guide us through the fields, I was transported into heaven on earth.

When Kimani was first starting physical therapy as a four month old floppy doll, I never imagined she’d be riding a horse five years later. This summer, I jumped at the chance to give her hippotherapy and crossed my fingers that she would be cooperative enough to be allowed to continue it. And of course, if Kimani is getting something, Miss Masha’s gotta have it too.

So, three weeks ago, my husband and I took the two girls to their first hippotherapy session... or rather let’s call them riding lessons. I had prepped Kimani by having her try on a bike helmet and bribing her with cookies to keep it on, without much success. I prepared Masha by having her watch youtube videos of children riding horses and telling her that she was going to have a turn. She seemed truly excited about it.

When we got to the barn, Masha was totally into putting on the riding helmet and belt, diva that she is... but Kimani wanted no part of that and spent the better part of her session taking it off and trying to grab handfuls of the dirt/straw floor to mouth on. Masha was willing to go look at the horses but refused to touch hers, and freaked out when they tried to get her up on it. She was visibly terrified.

Eventually they ended up tossing Kimani up on her horse and leading her around the ring with two adults holding her in the saddle. She protested loudly and continuously threw herself to the sides trying to get off. One time around was all the strength her PT and the helper had, and later I was told that they would not be able to work with her like that.



Masha’s therapist was more encouraging and told us that sometimes it takes 4 or 5 visits just to get a kid to stay on, and that next time would likely be better. To her credit, Masha did get on her horse just long enough to wave at me and yell, "Yeah baby!" before she insisted on getting back off.

The second week Masha was with me on vacation in Tennessee, so it was Kimani and daddy who went. My husband called me and told me that Kimani did a whole lot better but from the blurry pictures and video-in-need-of-too-much-editing, it seemed like she only did a little better and that might have been because they played "Call Me Maybe" for her the whole time. She did seem to enjoy feeding her horse a treat at the end.



This week I took both girls. I had a feeling it would go well because when I told Kimani that she was going to ride the horse, she willingly let me put her shoes on and ran to the front door. Masha said, "horse, horse, horse" all the long way there. But still it shocked me how they both got right up on their horses and stayed on for the whole time. Kimani sat upright and did not even try to mess with her helmet. My heart was so swollen with pride I thought it might explode. At the end, they asked Kimani if she wanted to be all done or have more, and she signed more.







And now I am back to wanting a pony.

The Secret to Kimani's Hair (and Speech?)

Kimani doesn’t like having her hair washed, or combed, or brushed, or petted, or styled with ponytails and the like. And her hair doesn’t like staying clean and tangle-free. So, every single morning is a fussing match. She cries. She pulls her head away from me. She pushes my hands away. She scratches me. She cries. She cries. She cries. I want to cry too.

Every so often I get really impatient and sick of it and I think, "This is it, I am cutting it off!" But I never do... because I remember all those girls in the orphanage with their short little bowl haircuts. I know that if I cut Kimani’s hair it would be more about me than her, so it stays.

This weekend I was on my own with my four youngest kids and I was worn thin (my tolerance not my waist unfortunately). I started to work on Kimani’s rat nest and she started her objections. This morning her hair was really messy because I had not taken the time to brush it out before bed the night before. The job was so daunting that I started to think about the scissors again.

Then all of the sudden an idea popped into my head. I ran to get her iPad and propped it up in front of her. Then I searched youtube for her favorite song, Kidz Bop doing Call Me Maybe.



She is enthralled with that song. After five times listening to it, she had a lovely set of ponytails and I kept my sanity (ok, having "I missed you so bad" stuck in my head all day might have made me a little crazy but it was worth it.)



Look at how happy she was even during the 6th and 7th rounds of it.







And then I realized she was singing along, or at least trying to. Here she is trying to sing, "bad".



After I put the iPad away, I noticed that Kimani was very verbal. She initiated a two word request over and over, "Want cookie." After a few cookies, I told her that we were all done with that, and instead of pitching a screaming fit, she went to get her PECs book and began looking through it. I knew she was looking for the cookie picture so I put it on the Velcro part of the book. She took it and put it on her request strip and gave it to me and said, "Want cookie."

I was really amazed. This is a big deal for her. She has never been that verbal and directed in her communication. So of course we are going to be doing a lot of experimenting with Call Me Maybe followed by mama’s homemade speech therapy.

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.

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.

Sweet Steps

Kimani’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.

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?

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.

She Tries Not to Cry, She Fails

Alone in the parking lot, the loaded question he asked plays over and over in her head as she turns the key in the ignition. "I will not cry. I will not cry," she whispers into the darkness as the van’s engine purrs to life. "You knew this was a possibility," her thoughts chastise as hot droplets spill over her lashes against her will. She swings the van around in the school parking lot and lets its bright headlights lead her home.

"Have you considered keeping her where she is now?"

That is what he asked her. But what he meant was that her little girl is not even good enough for the self-contained Kindergarten room she’d fought to keep her other daughter out of.

What he wants her to do is send the girl to a private school for very special children but she is afraid. (The school is in the same center as her babygirl's current preschool.) She has seen the children who comprise that K-2nd grade classroom. She knows she is a hypocrite but her heart can’t help it.

Why can’t pre-K last forever?

Stupid Is Not the Problem

I would wager that quite a few people who read yesterday’s post were anywhere from uncomfortable to horrified that I told my six year old son Jade that his four year old sister Kimani is in fact stupid.

Before I go on, let me put it out there again that Kimani has suffered brain damage. Her having Down syndrome is secondary to that. I would give most anything I have for her to only have Down syndrome. I would never, ever say that her sisters Masha and Autumn (who also have Down syndrome) are stupid, because they are not. They have a good measure of common sense and the ability to process and store information at a functional and educable rate.

Which brings me to the classic definition of stupid: lacking in common sense, perception, or normal intelligence; having dull mental responses; slow-witted. There is no value judgement inherent in the definition of stupid... nothing to say that it is a bad thing.

But we know that being stupid is bad. We know that calling people stupid is an insult. We know that actually being stupid gets you picked on and often abused. Those problems are more about us than they are about Kimani. She is who she is and has the brain capacity that she has. It is us, those around her who will place a value on her head. I happen to think she is worth her weight in gold.

As for stupid... instead of me trying to paint some prettier words over it (intellectually impaired and cognitively delayed) which have less stigma attached to them, I simply admitted to my son what he can already see for himself. His sister lacks the ability to do many things because she lacks common sense, perception, and a functional level of intelligence. What is most important is not that he believe that she is NOT stupid but rather that he believe she is valuable and lovable despite being stupid, and I am pretty sure he gets that.

Minus the Sugarcoating

Every now and again I keep Kimani up late and I snuggle and play with her in the livingroom, and it is wonderful. For the most part she is calm and open to my affections, and she plays, she actually plays with me... in her own divergent sort of way.



Tonight I let her stay up because during her bedtime routine she kept saying "No bed" to her father, and when she manages to speak, she always gets what she wants, provided we are able to give it to her.

Jade was also up and playing with some new Melissa & Doug stacking toys—trucks and trains—in the livingroom. He wanted me to play with him too. So she and I did. Vroom, vroom, I loaded wooden cars onto a wooden trailer while he built a bulldozer. Kimani tore it apart and put some of the pieces in her mouth.

Jade got frustrated and very upset with her. He let out a short angry cry and then accused her to me, "Sometimes I think she is stupid!" I could see it in his face, in his eyes, that he was afraid of what he had said. Maybe he feared getting in trouble, or maybe he worried that he hurt her feelings... either way the words just hung there in the room, and the tears welled up in my eyes.

I didn’t know what to say to him. I hate parenting moments like that... when there is something big, something important, perhaps crucial and I have no idea what to do with it.

Even though I didn’t know what to say, words came out, "Yes, Jade. She is stupid. She cannot think like you can. Her brain was hurt when she was a baby and it made her stupid. But we don’t say it like that because that is mean. It is not her fault. She cannot help it. Can you forgive her for ruining your things?"

He said he could.

(Can the mother forgive Fate for ruining her child? She said she cannot.)

Inside Kimani

Always I wonder what she sees, what she knows. Always I wonder who she is on the inside.

If I could paint her brain it would look like this...


And if I could paint her heart, it would look like this...


And if I could paint her soul, it would look like this...


And if I could paint a little Kimani inside herself, it would look like this...


But I did not paint those pictures. It was Kimani who painted herself from the inside out.