Masochistic Me

Today I did my first school supply shop of the season.

I contemplated doing it yesterday, thought I might bring all five kids and just “see what happens” and after packing them in the van found myself at the Starbucks’ drive-thru instead. After a sip of caffeine, the self-injurious idea to go into a store with all my kids passed and we all went home.

Then last night my mom called and offered to come sit with the gang for a bit so I could get the shopping done today. Wow, thanks mom! I clipped together the three lists of items I need for Masha, Jade and the Gecko and weighed my store options. Staples? Target? Walmart? Last year I had to hit all three in order to fulfill the very specific teacher requests.

I made the call to go to Walmart because I figured if I got lucky time-wise I might be able to throw in a little grocery shopping too, big dreamer that I am. Wally’s was way more crowded than I ever remember it on a Friday morning at 11:30: except for maybe that one time I ended up there on Christmas Eve because our copy of The Grinch that Stole Christmas was missing (as if some damn grinch had stolen it from us) and Christmas Eve would have been completely ruined without a showing of the Grinch, but that is a whole other story.

The school supply lists in my hand were full of brand names... a Mead this, a Fiskars that, Ticonderoga pencils, and Crayola washable thin & thick everything else... God help your kid if you cheap out and buy that off-label stuff because then the teacher will know that you are either broke or really bad at following directions.

After about 45 minutes of digging through bins, comparing items to my lists, and doing the mental mathematics of whether three 2pks of glue sticks is cheaper than one 6pk (it is), I realized that there might be a hidden camera somewhere... that maybe this was a Survivor tryout and damn, I was not about to get kicked off before I even made it on. Surely the guy whose cart was blaring rap music complete with F-this and F-that lyrics up and down each school supply aisle was a prop, right?

Oh and did I mention that I was on a timer? My mom had to go somewhere so I had to be home by 12:30. The pressure was incredible. Toward the end, I just started throwing extra crap in my cart thinking I could dump it off on the way to the checkout if I decided they don’t really need it or it was the wrong stuff (sorry, yes, it was me who left those pocket folders on the shelf near the checkout.)

I spent $54, got home by 12:38, and made a big dent in the school supply shopping task, and I got my daily dose of You Suck at This. Who could ask for more?

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.

ONE21—What It's Not

You may have heard a bit about ONE21 recently, perhaps at the NDSC convention, or maybe here on this blog, or on Facebook and are wondering what it is. Before I tell you that, let me say what it is not.

ONE21 is not a research project and does not support any particular research project or type of Down syndrome-related research over another.

ONE21 is not an organization. While ONE21 was initiated by Down Syndrome Achieves, it is more of a campaign, or a group effort to do something positive for people with Down syndrome. The ONE21 website is a .org rather than a .com because ONE21 is a charitable project.

ONE21 is not a parent group. The people who support ONE21 are made up of advocates, parents, and researchers. And it is our hope to engage the entire community {Ahem, friends without children with Ds, that's you :-) }

ONE21 is not interested in a cure for Ds. ONE21 firmly believes in the value of people with Down syndrome and wants the best for them. We believe research can be a gateway to helping our loved ones with Ds live longer, healthier and more vibrant lives.

ONE21 is not a competitor to any Ds organization. What ONE21 aims to accomplish will be shared by all.

OK, so if it is not all that, then what is it about?

ONE21 is a community-wide initiative with community-wide benefits. We are bringing activism into Ds research and stepping up to provide researchers nationwide with the tools they need to develop breakthrough therapies and best practices that will help our families now.

Beginning August 21st, you will have the opportunity to make a tangible and lasting positive impact on the quality of life for all people with Ds by making a commitment to strengthen research capabilities for Ds researchers nationwide. Visit ONE21.org for more information.

My Latest Parenting Fail

Warning: This post has a gross factor rating of a zillion. If you have a weak stomach or are catching up on blog reading while eating your lunch, turn back now.

Let me set the situation for you. I have been alone with my four youngest children and no vehicle for three days now because my husband has the Gecko away at Boy Scout camp and the van is in the shop.

I am bored. They are bored. The sun is shining but nobody wants to do the same thing outside so we are mostly staying in. Masha and Autumn are stir crazy. They are getting into all kinds of trouble. And they keep bugging me to let them go outside to ride their bikes. So finally, I fling open the doors and let them loose.

The phone rings. My girlfriend and I start chatting, and after a minute or two I realize I don’t hear or see the girls. So I send Jade out to check on them.

Jade, running back into the house, "Mom! Mom! Reba killed something. Reba killed a chipmunk. It's dead. Mom! Come see!"

Me, still on the phone, "Are the girls near it?"

Jade, "Yes!"

Me, running out the door and screaming, “Are they TOUCHING it?!”

Jade, "YES!!!"

When Masha saw me coming, she threw ↓ ↓ ↓ what she was holding in her hand.



Me, horrified, "OH MY FREAKING GOD!"

Masha, scared now... put her hand in her mouth in that self-soothing way she always does.

Me... dropped dead from a gross-out heart attack... no really, I screamed louder, "GET YOUR HAND OUT OF YOUR MOUTH!" and I grabbed her and held her hands away from her face the whole way to the bathroom.

Meanwhile, I yelled to Jade, "Keep Autumn away from that thing."

Once Masha was clean, I went back out to get Autumn.

Jade, looking grim, "She touched it too, mom."

Me, "Oh no no no no no no" as I rushed her to the bathroom sink.

When I went out to get rid of it, I saw that not only had our cat killed that thing, but she had also eaten it... and puked it up.

Yes, my beautiful 6 and 3 year old girls were outside playing with dead, puked up animal parts. Ugh.

The London Trip

I am a casual history buff with an odd collection of books, mostly morbid compendiums, memoirs, and period anthologies. Sometimes I foray into documentaries or even made-for-tv dramas on the History Channel. All the while I keep in mind that the history I can know about is only what survived and is hardly more than whispers of what might have actually happened. Which is why I love to travel and see for myself the lands, what is left of man’s architectural feats and creative constructions, and the artifacts spit up by the ghosts of long lost people.

On May 27th I flew to London to visit a best friend who is working there for a couple years. Her apartment is on the edge of Greenwich and that is where we started out. The world’s time line is there, up on the hill at the Royal Observatory. I adore timepieces and globes, so a visit inside was mandatory.


Outside the observatory


The 24 hour clock.

In Central London we did the Hop On/Hop Off tour which I recommend if you don’t mind being a total touristy tourist. We stopped at the London Eye and Big Ben and wandered around. We wasted a couple hours in the London Dungeon (a must skip attraction) and then hopped on/off near the Tower Bridge and had dinner. That bridge is stunning, probably the prettiest bridge I can ever remember crossing. When I first saw it, I assumed it was the infamous London bridge but no, London bridge (now in its 3rd? iteration) is not nearly as lovely.


Walking across the Tower bridge.

The next day we continued our tour with a boat ride up the Thames from Greenwich to the Tower. The history of the Thames and its bridges was fascinating, and somewhat sad.


Tower bridge from the Thames.

Then we spent the rest of the day, a rare sunny day, at the Tower of London, the first major castle built in 1078 by William the Conqueror. Of course it has been added to several times through the centuries. It is famous for its prison which housed Anne Boleyn until her execution, and then later her daughter Elizabeth for a while (before she was crowned QE1).


The Tower of London from the Thames.


The sun really did shine the day I visited the Tower.

There is so much to see inside the Tower, like the crown jewels—the most stunning collection of gems and gold I have ever seen—or the collections of armor, weapons, coins, clothes, etc. housed in the original white castle building. But, the most interesting things were those that charged my imagination with connections to individuals whose lives were separated from mine only by time as I occupied the same spaces they had.

Someone stood in this window with a crossbow and defended against the men who manned this catapult...





A prisoner locked away in a high up tower etched this into the stone wall. I tried to imagine having that much lonely time on hands and why this image over any other:





I wondered about the beating hearts on either side of this portcullis as it lowered between them offering perhaps protection, or grief.



I really enjoyed London and would have loved a few more days there. The hard ciders were delicious, the fish -n- chips were as tasty as I had always heard they were, and the croissants were reminiscent of France. I did not get a few more days in London though... because I spent them in Ireland instead but that is a post for another day.

Masha Wants to Ask You Something

Until she was three and a half years old, Masha was raised in a completely inclusive environment, an orphanage. Her babyhouse, a sprawling building which at one time had been the barracks for soldiers of World War II, was split into three sections of children’s quarters. Central to each was public visiting area and a non-working kitchen. There were three other children with Ds that we saw there, though not in Masha’s section, and no other children with visible special needs. All together there were about 35 children living in the house.

Masha seemed to be treated like all the other children, although we were told to never let her cry... so she may have been a wee bit spoiled. She was incredibly independent, able to dress herself including putting on her own shoes. She ate at the same table as the others from the same style of glass bowl, using the same large utensils, and drinking from the same style open cup. Outside she rocked herself on the same single swing and played on the same scooter toys.



Once we got her home to the United States we realized that Masha watched other children very closely and expected exactly the same as whatever they got. And although she has chilled out a little bit about this (in that her response to not getting exactly what another child gets has improved from an epic tantrum to a minor fit) she still wants it, whatever it is.



And she will work ten times as hard to get it. She is tenacious.



But now, she is in school. She just wrapped up her first year of general education kindergarten (which we fought very hard for). And now more than ever she wants what they have, to do what they do, but she has hit a wall.

Her speech apraxia and her learning disabilities made it very hard for her to interact with her peers the way she wanted to. She knows that some things are different for her, and she is annoyed by that, which is evident by her acting on her frustration.

Gen Ed is harder for her and on her than her self-contained pre-k was. Even with generous modifications and supports, it is still harder. After weighing all the pros and cons, we still think it is the best thing for her given the options we have to choose from. So this coming fall, Masha will begin Gen Ed Kindy again.



We are doing everything we can for her to help alleviate the apraxia. This month she begins hippotherapy. She has her own iPad that has apps for apraxia as well as everything else under the sun that she likes. She gets speech therapy 4x every school week. She is still constantly surrounded by family and peers that talk to her, and around her.

She talks all the time. She sings, tells stories, tattles, reprimands, demands, instructs, argues, praises, loves... and yet only a few of her words are intelligible.

(Masha, only home from Ukraine 2 months, with a lot to say. Her doctor at the babyhouse told us she spoke about six words in Russian, but now we know that she was just not able to be understood.)

The causes of speech apraxia are unknown, and there is no cure for it. Why people with Down syndrome are more susceptible to it is also a mystery. Almost 150 years after Down syndrome was first clinically described, we still don’t know much about what that extra chromosome is actually doing and how it affects the people who have it.

To take research from theories and mouse models to real health benefits requires our community to unite behind the need for answers. And we need a general public that cares enough about Masha and the rest of the 6 million people worldwide with Down syndrome to step up with us. Visit ONE21.org and join us in reimagining the future. If she could, Masha would invite you herself.