School Bus Blues

When Masha started General Education Kindergarten last year, she was transported to and from school on the regular ole bus with her big brothers. It wasn’t long before the problems started. She wouldn’t keep her seat belt on and it got worse from there.



(Do any of the other kids on the regular bus wear their seat belts? Uh, no.)

But she started moving around too much, leaning over the seats, bothering other students... and spitting. Apparently someone on the bus modeled that for her and she picked it up lickety-split. I fielded phone call after phone call about how bad she was, and I tried idea after idea trying to get her to behave. I even begged, bribed, and forced her brothers to take turns sitting with her to try to keep her behaving in a positive way. That only made things worse, and in retrospect it probably wasn’t my best idea ever.

The bus ride is so boring for her. Other kids sit together and chat, or they whip out their handheld electronic games and play. Kids socialize on the bus, at least that is how I remember the long daily rides when I was a kid. Masha sits alone and she has no games to play. The special books I sent for her to only have on the bus turned into projectiles. Eventually she started kicking the windows, causing the driver to have to pull over to deal with her. The school refused to provide an aide, so I suggested a 5-point harness seat belt.

Instead they kept pushing for her to ride on the special bus, and I had no ideas left, no fight left... so I agreed to try it. I figured they would work with her, teach her the proper way to ride the bus and that before too long she would be back on the regular bus.

Oooh, lesson learned. If it goes on the IEP, it is LAW and it is a nightmare to get back off the IEP. The little bus came with an aide and a harness that I had to strap on her everyday over her clothes/coat. Once on the bus, they literally clipped her to the seat by the shoulders and lower back using the metal loops on the harness. The aide also coddled her. She waited outside the bus and took Masha’s backpack for her and then helped her up the steps and into her seat, allowing her zero independence. Since this bus is used for multiple children with special needs across multiple schools in our district, Masha’s bus ride became much longer, and she was forced to leave class 15 minutes early everyday to get loaded onto the bus so that it could depart prior to the regular bus loading frenzy. A couple weeks lasted months.

One day, while waiting with Autumn and Masha for both their buses, a very bad thing happened. I forgot the harness. When Masha’s bus came (before Autumn’s this time) they refused to take her on the bus without it. I was stunned. The kid can’t ride on the stinkin’ bus one freakin’ day without being strapped in like a convict? I asked them to wait for me to drive up our (sorta long) driveway to get it, and they said they did not have time for that. At that moment, I forgot that I am a nice lady and became Psycho Bitch. Seriously, the rope snapped, kwim? Masha was standing on the bottom step of the bus while the aide was trying to talk me into taking her back home, and I said “No. No fucking way!” (Yeah, I took a lot of heat for that one. Sorry parents of those kids on the bus that may or may not have heard me.) I turned around and stuffed Autumn (who I was holding the whole time) back in the van, jumped in and drove up my driveway with Masha still standing on the bus step.

Yup, they waited for me to return with that harness. But I decided right then that Masha was done riding that bus. I insisted that they begin teaching her what is expected of her. I demanded that she be back on the regular bus within a week or so of practicing without that contraption on her.

And it all worked out just fine. Then over the summer, she attended camp for 6 weeks. She rode the full-sized camp bus every day with no problems, and I was one proud mama.



This Fall, she started off on the regular bus again and everything was going just fine; until I got the phone call today. Masha is taking her coat off and opening her backpack and throwing her stuff on the bus floor. And although she is staying in her seat belt, she is getting up on her knees and looking over the seats. She is causing her driver so much stress that he “missed a turn down a street one day last week.” I felt like pointing out that this dude backs over the mailboxes at the end of our road once a week, what’s his excuse for that? But instead it went kinda like this:

Me: I fail to see the problem with Masha removing her coat. In fact, if Masha can now unbutton her coat, that is an OT goal completed and I am impressed.
Principal: It’s cold out now.
Me: Yeah, Masha will figure that out.
Principal: blah blah blah blah
Me: No, no special bus. How about an aide?
Principal: blah blah blah blah, probably not.

I am tired people. I am sad. I am feeling defeated. (But mama, SHE KEEPS HER SEATBELT ON!!!!!) Yeah, there’s that. That’s big. So I suggested we try more detailed social stories, and I have a few more ideas up my sleeve but really the problem is not going to be solved anytime soon.

Because the real problem is that she is bored and lonely on the bus. No kid sits still and alone, day after day, with nothing to do but stare out the window for forty minutes. Am I right?

Thoughts on Adoption

As many of you know, Masha and Autumn are adopted. We got them in the late summer of 2010 from Kyiv, Ukraine. Autumn was 10 months old and Masha was 3 years and 5 months old... to the day when the judge decreed them our daughters.

We knew very little about them when we chose them. We knew that Masha was healthy and that her paternal grandparents were still visiting her regularly. We knew that Autumn had an unfixed complete AV Canal heart defect that was possibly killing her and likely causing permanent damage to her lungs if she did live until we could get her home and into surgery. We knew they were cute.





We also knew that it would take about $32,000.00 to complete the entire adoption process. Half came from our family members and the other half was donated from people in our real and virtual lives, and even from strangers. We are forever grateful to those people.

We also had no idea how many adoptions end in regret and even disruption. Yes we took the class that warned us that some orphans may not bond well and that there were other negative possibilities but we didn’t dwell on those things. There are many reasons why adoptions can sour, and one of the least talked about is that adoption is not the same for the children as it is for the adopting family. While that might seem obvious, the consequences of it can be devastating.

It dawned on me the day I met Masha... though the future we were saving her from was bleak, her present was just fine with her. She was a very happy, well adjusted child who had absolutely no idea that the nice people who were visiting her were about to take away from her everything she had ever known and loved. She had a life. She had a language. She had people she adored. She had children around her who were like siblings. She had a routine, and well-developed senses for taste and smell and sounds. She had preferences. She had a life, and we took it away from her.

From her perspective, we were not rescuing but rather abducting her. She must have been terrified. She must have missed her grandparents, doting groupas, and orphan siblings. She must have missed her home, her routine, her crib, her swing. She must have been frustrated and lonely for the things she understood.

Looking back, I think we did ok. We got it pretty early on and we did everything possible to keep what we could of her world. I cooked some Ukrainian dishes that Masha would recognize (though God only knows if they tasted close enough.) We kept the few ratty stuffed animals, and all the clothes and shoes the groupas gave us for her. We bought Russian lullabies for her. We showed her pictures and told her how much everyone still loves her. We called her by her Russian lovey name, and used all the Russian words we learned and could remember. Most of all, we tried to respect her will.

As it turns out, Masha is probably one of the most resilient orphans there ever was. She learned some signs before she even left Ukraine, and once home she drank up the English language. She literally spent hours on the iPad touching pictures and hearing the words. She immediately adjusted to the new routine and overcame her fears (of the bath, of losing food, etc.) within months. She watched everything, and she participated in everything. But what really made all the difference was that she fell in love with all of us.

Autumn, too, had been loved. In fact, if not for the love of her house doctor, Tatiana, I don’t know if she would have lived. Tatiana saw to it that Autumn finally got the heart surgery that she so desperately needed, even though she already knew that Autumn had a family coming for her. She also oversaw round the clock feedings because, as it turned out, Autumn was suffering from severe reflex and needed to be fed every two hours. More than half of what she ate came back out. I cannot imagine how hard it was pre-surgery to get a baby who was in failure to thrive and congestive heart failure to eat, but they did it. Autumn was not an easy baby, but she was an adored baby.

For precious Autumn the uprooting must have been even harder... because we even took her name from her. There was nothing I could cook for her that resembled anything they fed her, and our clumsy attempts at Russian utterances were met with stares. We had none of her lovey dolls or toys. And, sadly we assumed that since she was just a baby that her attachments would be easily replaced. Not so. She began sucking her thumb so intently that she eventually sucked the nail right off. She woke up crying every night, on and off all night. All of our affection and attention probably kept her alive, but it wasn’t until she grew into us and forgot her past that she was able to bloom.

We feel very fortunate. Our daughters are healthy and happy, and they have given to this family just as much as they have received. Our daughter Kimani has been blessed immensely by having two sisters who do everything with her. Those two little orphans were just right for us, and for each other.





Over the past three years, we have heard many unsettling things about adopted children, the adoption process, adoption organizations, and so on. We know that our story is one of the happy ones. We still believe that Reece’s Rainbow is a good organization, and we are still thankful for the roles it played in bringing us to our girls. We still think our facilitator Oleg is one of the best. We still think our girls came from a place that while poor, provided them with loving care. We still think that the seven weeks we spent in the capital city of Ukraine were some of the best times of our lives. We still think that our adopted daughters are two of the most wonderful people in the world. In fact, three years into this journey, there is not one bad thing I can think of to tell you about our adoption.

Awareness ---> Acceptance

It is October, Down syndrome awareness month. With that should come some obligatory posts about how awesome ordinary my girls are. The idea is that if you could become truly aware of what it means to be a person with Down syndrome, you would not treat people who have it any differently than people who don’t.



I’ve never been quite sure how to make that happen, and last night—during the middle of the night while I was supposed to be in deep repose—it dawned on me: I can’t make that happen. That is because we both have a role in this process. It is my job to bring awareness to you and your job to accept people with Down syndrome as fully human, like you are. And I cannot force that.

Yesterday a woman from the Office of People with Disabilities called to share some program information with me. We talked for a bit and it came up that I actually have three daughters with Down syndrome and she said, "You are such a good person." What can I tell her about Down syndrome that would make her understand that I am no more good than any other woman who has five children at home?

A while ago I was at a Pampered Chef party and as I chatted with a stranger, I mentioned my three daughters with Down syndrome. A very serious look came upon her and she said, "Oh, I’m sorry." How do I explain Down syndrome in a way that lets her know there is nothing to be sorry about?

In early September I sat in a meeting with Masha’s Kindergarten team. Her new teacher was visibly nervous. The team asked a lot of questions about behaviors. What could I say to ease their minds?

Sometimes I feel like a walking Down syndrome commercial. Over and over I find myself saying, "They are just like my other kids except they learn more slowly." (Except for Kimani of course, who really is not like anyone else I have ever met, and in her case I am continuously explaining that "this is not what Down syndrome is like. She suffered brain insults as an infant and has neurological damage." But Down syndrome is what they can see on her, so despite my denials, it gets the blame.)

If you could see Masha and Jade together, you would believe me. While they are miles apart in their academic progress, they are evenly matched in their life skills. In fact, though she is six months younger than he, she is more helpful, gets ready for school more independently, and follows routines better. When it comes to fighting over an iPad, they are even-steven, and it is a toss up as to which one will come crying to me. She rides his bike, pulls him on the wagon, chases him down the slides. He reads stories to her, and gets insanely jealous when she gets one of his sight words right during our games of Word War (an M & M prize is at stake here folks.)



Yes, if you could spend an afternoon with my children, you would know what acceptance looks like. When my boys look at their sisters, they don’t see Down syndrome at all... they see only Masha, or Autumn, or Kimani. They see people not a syndrome, and when that happens for you, I will know that I have done my job well enough that you have been able to do yours.

Tell me, could you ever imagine yourself screaming with joy into the face of a person with Down syndrome?

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.

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.

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.

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.

The Wicked Stepmother

I came across a blog written by a woman who is the stepmother of an 11 year old girl with Down syndrome. This mom is young, and pretty, and struggling with rage and resentment. Reading her posts ruined my day. I know lots of kids are ignored, unloved, screamed at, disdained, and all kinds of other descriptors that border on abused but when it is because the child has Down syndrome that hits close to home.

"I could see all these great attributes in her, attributes which she would receive compliments on almost regularly. For me, however, all I could see was the disease. Ugliness. Stupidity. Mental inabilities. Physically odd attributes. A disability. A down syndrome."

"Give her away!" I yelled at the screen, "Just give her away to a family that will love her."

What really irks me about the blog is that the whole thing is dripping in Christianity. As in this excerpt,

"Today I needed an extra dose of prayer. Perhaps I got it but ignored whatever God was trying to send my way. In fact, God knows what I need. He gives what I need every day. Yet failures threaten to take over - and oftentimes they do. This weekend (child’s name) became a full-blown nuisance. This weekend nobody really wanted her. This weekend she was tossed around from family member to family member. Tag! You're it!"

Or this gem which makes me wonder what her hands have done...

"Now, when I feel overrun with guilt over what my angry lips have said yelled or what my hands have done out of hatred, I can see that God is there beside me. He is with the ones I have hurt, too. He is their comforter and my redeemer."

WTF? I am a stepmom and an adoptive mom... I get it, it’s complicated bonding with a child who didn’t spring from your loins.

My stepdaughter looked very much like her beautiful mother and growing up she made the same facial expressions as her mother (the eye roll, the FU half smile, the evil glare) and so she was a constant reminder of another woman my husband had once loved. But as much as I abhored that woman, I never took it out on my stepdaughter. I grew to love that little girl and I wanted her to love me. Now she is an adult and I see both her mother and myself in her. Hopefully she retained the best of both of us.

 

My older adopted daughter was so alien to me. With a judge’s signature she became mine for all time... but she didn’t feel like mine. I was grossed out over her boogers, her poopcidents, sharing a straw with her... I admit that I often felt like the fulltime caregiver instead of an adoring mother. I knew that those little things that grossed me out were anachronisms still present due to her having Down syndrome. I knew that these were things beyond her control. Knowing it did not help fix my heart. I loved the idea of loving her, but I did not feel a motherly love for her. So slowly it grew that I worried there might be something seriously wrong with me. I have a best friend who fell for Masha hard, and all she ever saw was the beauty, the cuteness, the dearness of her. She would laugh at the booger kisses, share her food, and clean her up like none of that bothered her at all. Her love for my daughter was a different lens for me to see through. Her love for my daughter helped me to be the best mother I can be be to Masha.

I wonder what it would be like to combine those two scenarios and drop the cute baby phase out of it (that mom got her step kid past the toddler age). I can understand that mother’s feelings but I cannot relate to her refusal to try actually loving the kid as a possible solution to their fractured relationship. Love is not just a feeling... it is not something that happens to us or doesn’t... it is action. If I could give that mother one piece of advice I would say, "Fake it till you make it." Smile at your stepdaughter, hug her, paint her nails, forgive her her mistakes, let her play the way she wants to, praise her, protect her dignity, compliment her, be a model for her of what a Christian woman should be like. And one day you will find that you aren’t just acting in obedience to your God, but also out of a real love and enjoyment of this girl who will forever see you as what a mother is.

Let Them Eat Cake (Pops)

I told you a couple years ago that Jade is a budding chef and since then I have done everything possible to encourage his cooking adventures. I had hoped if he was involved in the cooking he might actually taste or even eat the food we make, but alas that is not usually how it goes. Except for when we make goodies... then he is all about eating... he eats the ingredients as we put them in, slurps the batter off the mixers, spoons, and bowls, licks the frosting knife, and of course smacks up every “accidentally” spilled sprinkle he can find.

So for Christmas I bought him the Wilton Kids Mega Sprinkles Toteand my mom got him the Nordic Ware Cake Pops Baking Panso that we could make chocolate and sprinkle-covered cake pops.



He was very excited about the idea of making cake pops and has been bugging harassing reminding me almost daily that we have to make them. This week three of my five kids had a snow day on Wednesday... what better way to pass the time but making cake pops?

After the fourth go-round with the pan in the oven (for 16 minutes each time) and lots of batter still left in the bowl, I decided that we are definitely buying three more cake pop pans. Then once the house smelled truly delightful and all the candy melts and sprinkles were lined up and ready, I read the part where Gina (of Skinnytaste) says to chill the cake balls for 45 minutes in the fridge. Uh, ok...

It felt like hours after we had first begun our big adventure when we were finally ready to start dipping. The Gecko chose black candy melts, Jade chose red, and I chose white. I microwaved the candy to get things going and then put the glass cups into a pan of simmering water to keep the chocolate soft. The first thing we realized is that the little cake balls did not want to stay on the sticks and that the chocolate was too thick and heavy for them. We glopped the chocolate on and then watched sadly as the sticks poked through or the cake balls slid down their sticks.









No matter the setbacks, the boys totally enjoyed decorating their cake pops and you can surely tell they are just about ready to debut in Martha Stewart...



And no matter how ugly naturalistic my boys’ pops turned out, rumor has it that they were delicious anyway.



I don’t know if I ever told you this but I loooove to cook, and I am kinda good at it. And totally screwing up cake pops is just not acceptable to me so... today we tried again. This time I thinned the melted chocolate (with a big dollop of Crisco...ewww gross, I know but, a). it works and b). there are grosser things in life to worry about) and I insisted that we wait the minute after dipping and before decorating that Gina suggested (and in our excitement we disregarded last time). Those two little changes made a huge difference in physical as well as aesthetic results as you can see...





And a little birdie told us this batch was scrumptious too...

The Orchid Child - Week 2 Blog Hop

"The smallest flower is a thought, a life answering to some feature of the Great Whole, of whom they have a persistent intuition." —Honore De Balzac



Unlike our wild boy weeds
who shall grow strong
and burst into golden buds
with or without,

You, beautiful child,
are the exotic orchid
whose delicate blossoms
must be coaxed into bloom
by dappled sunlight.

You, exquisite child,
rooted in enriched soil,
watered with joyful kisses,
pruned by love’s touch,
will flower enchantingly.

You, precious child,
are the sweet fragrance
that delights our senses
and pollinates adoration
in this family’s garden.

(Orchid photo by Greg Allikas, used with permission)

Blog Hop #2 - 10/12-10/14; links close on 10/14 at midnight

A Fart Changes Everything

I would like to tell you that being a mom to kids with “special needs” is no big deal, not different at all than having five typical children... but then I would be lying. Not just lying to make a point (like a good politician might do) but outright plain old lying, which is what I do to myself on this particular subject most of the time.

It is different, and lots of the time it is a big deal. Take this morning for example... it was just about 7 a.m. with the bus scheduled to arrive at 7:20. Masha was eating breakfast and letting me braid her hair. Autumn was sitting next to us enjoying her sliced banana. Suddenly I smelled a terrible fart that had made a silent entrance. I knew Masha was the culprit. I asked her if she had to go poop, and she adamantly insisted, “No, babygirl toot.”

99% of the time, Masha goes on the potty. She is very good about Number Two and has only had a couple “can’t get her pants off fast enough” poopcidents, so I let it go... because if I force her to sit on the potty when she really doesn’t have to go, it is just a 10 minute crying ordeal that would likely lead to missing the bus.

At 7:16, I piled three kids into the front seat of the van and drove them down the driveway to wait for the bus. I did the face inspections, wiping away crumbs or toothpaste... and there it was again... a real silent stinker. Now we all know that there are different kinds of gas... and this kind is usually a harbinger of belly ache poo. I firmly ask, “Masha, do you have to poop?” She gets very upset, stiffening up for a fight, “No, nooooo.” Then she proceeds to blame it on her brother.

A regular mom, a typical mom, an ordinary mom would just explain to her five year old that she can go poop and then mommy can drive her to school... and then her child would admit the urge or put mommy’s mind at ease with a convincing, “I really don’t have to go.” But no so in my case. Now the stakes are higher... the bus is down at the dead end turning around... seconds away from taking them for the day, and I have to decide what to do. Do I hold her back, literally kicking and screaming, force her onto the potty and wait out her tears until she gives in and poops (if in fact she really has to)? Or do I send her to school and risk an accident there?

My stomach is churning as I give over her backpack and let her run up the bus steps. If this were Jade last year I would have been like, “Oh well, I hope it doesn’t happen but if it does, c’est la vie in Kindergarten.” But this is MASHA, and if MASHA craps her pants in class that will be a whole different story... that will be a reason to say “she is not ready for Gen Ed.” That would be a reason to say she FAILED the probationary period and has to go to the special classroom where they think pooping in your pants is par for the course.

And so as a “special needs mom”, I get to spend the day worrying about her... Wondering if she really did have to go, and if she will be able to tell them and get her pants off quick enough in a new bathroom. Yeah, for me—the SNM, a simple fart changes everything.

After school update: Masha came home in the same clothes she left in and with no note in her backpack, so I am assuming she had no potty issues today :-)

As Fate Would Have It

Did I tell you about the little girl my son the Gecko bullied in summer camp? No? Well she teased him about his name, and he pretty much decked her. When I got the call that night from the girl’s mother, I was a mess... shocked, sad, totally embarrassed and horrified by his behavior.

Soooo, can you guess whose mom is Masha’s Kindergarten aide? Yes indeed, and I am really happy about it.



It took a lot for her to call me to tell me what happened, and it also took a lot for my son to write a beautiful letter of apology. The day he delivered it, I ran into the mom in the camp parking lot. We had a wonderful talk and I left the situation feeling good about what had started off as something terrible.

When I brought Masha in to school for the walkthrough, there she was waiting for us with a huge smile. She gave me a hug and told me how excited she was to be able to work with Masha. I was thrilled and quite relieved because I have been worried about who would play this role for Masha.

I admit I had a fear that they would not choose someone who was looking forward to helping and encouraging a little girl with Down syndrome whose mom fought for her to be educated alongside the “regular kids”. I wondered if the aide would be well-educated, bright, caring, and if she would have a real desire to make a difference in Masha’s life. Well no more worries, and Jade (great name don't you think?) has already admitted to me that she is quite smitten with Masha :-) Here’s to a great Kindy start!

Waiting for the bus...

Triple Blessed to Be a Ds Mama

Ever wonder what it is like to raise three girls with Down syndrome? Enjoy a sneak peek at life with my girls.

The Day I Dreaded

When the phone rang at 11:07 a.m. and the caller ID flashed “Private” on the screen, I was not surprised to hear the pediatrician’s voice saying hello. I had just been on the phone with her office to ask for vaccination info for camp forms. So although a call directly from the doctor herself was not necessary, it was not alarming.

“Hi there,” she said softly, “I need to talk to you about Masha’s lab results.”

Instantly I felt sick to my stomach and braced myself to hear her say that the CBC was bad and Masha has Leukemia.

“Remember I ordered an HIV screen because she is adopted? It came back positive.”

She continued on... explaining antibodies tests and actual virus tests... Masha’s blood had failed the virus test even though the antibody test came back negative. Could I take her into the hospital for further testing... here is the phone number... they have her records and they are waiting for her. My composure stayed steady on the phone as my brain repeated over and over, “It’s not a death sentence anymore, it’s not a death sentence anymore, it’s not a death sentence anymore.”

As an eighties girl, I was wide awake when AIDS made its public debut. Within a couple years the disease traveled from the drug and homosexual male communities into dentists’ offices and blood transfusions. We were all appropriately terrified of the mysterious disease that had no cure and eventually ended in death. Those who had AIDS or its precursor HIV became pariahs.

Before we hung up, our pediatrician gave me one small drop of hope in the words, false positive. Maybe, just maybe, this was all a big mistake. I pushed the call disconnect button and burst into tears.

It is doubtful my husband understood much of what I sobbed into his ear but the HIV part got through to him and he was home with me within a half hour. Together we cried and wondered how on earth this could be possible. She came from a wealthy family who had other children before and after her, so it is doubtful it was transferred to her perinatally. She had never been in surgery so a transfusion was unlikely. What other possibility was there... bad vaccination practices at the orphanage?

Jumbled. That is how the thoughts come in times like this. I remembered a bad bite on Masha’s back last year... the dental indentations had looked suspiciously like Kimani’s mouthful of teeth and now I worried if HIV could be transmitted through a human bite. Maybe it wasn’t Kimani who bit her... maybe I would have to tell the school and they would tell the other parents... and as if Down syndrome were not enough to get in the way of her up-and-coming social life, surely HIV would be. Who in their right mind invites Typhoid Mary to their kid’s birthday party? Kimani had meningitis, Masha has HIV, and what’s on the agenda for Autumn... Leukemia? WTF? This is why I avoided getting their labs done... this is the day I dreaded. The enemy I can’t see is the one who has had the most power to destroy my babies.

My best friend was at my house in a matter of moments after my call to her. She would babysit for us so that when Masha came home from school, her father and I could whisk her off to the hospital to meet with the infectious disease specialist. Putting her in her carseat I started crying all over again... she just seems so strong and healthy... She asked me if I was hurt and she leaned in to kiss me. It is ok to kiss her I reminded myself... HIV is not a booger disease and a little bit of runny nose or wet lips was not going to make me get it. Oh my god, I don’t want to be afraid to love on my daughter.

 

The little old lady “bug” doctor, the same one who hovered over Kimani in PICU trying to pinpoint the force that was sickening her week after week, walked into the room and said, “Well hello. I know you but who is this little one?” Introductions and explanations were made and then she reviewed Masha’s translated medical record. There it was. Anemia. The doctor explained that in some countries blood transfusions are given to anemic children.

The needle jumped up a notch... this whole time bits and pieces of information pushed the line of fear up or down on the graph in my heart. The doctor explained all of the tests given for HIV, and that there are two different strains and that Masha had actually not yet been tested for the virus itself (the needle dropped down a notch). In fact they would be drawing blood to do that test right after our meeting. The results would take a week and she herself would call us to deliver them. She took my hands in her cool, bumpy grandmotherish hands and looked me in the eyes. “Deep in my heart I think this could be a false-positive but if it is not, you must remember that it is not the end of the world for her. This is a chronic disease and we can treat it.” I felt my cheek muscle tense up and wiggle but I did not cry. I held on to those two words that might possibly erase this whole thing... false positive.

For the next couple of days I couldn’t help but remember how I'd had a similar bit of hope while pregnant with Kimani. They didn’t know for sure if she had Down syndrome, and I had held fast to the word “maybe.” And then there was the hope that the meningitis had not caused brain damage...

On Friday, Dr. L. called with the good news that Masha is fine. Her specialized blood test for the Human Immunodeficiency virus was negative. This chapter has a happy ending.

School Pictures

Remember last year’s school picture? I am still ashamed of my initial reaction to it. I don’t know... if one of my other children brings home a crappy school pic I either laugh it off or shrug it off because it has no connection to anything emotional to me. But with Kimani everything is tied so tightly to my heart strings.

After school on the Thursday before spring break I was cleaning out the backpacks, Masha’s first, and there it was, the heavy crisp white picture envelope. I couldn’t wait to see my little cutie looking all schoolgirlish. Hmm, I was not bowled over. “Cute, but next time I need to do something different with her hair,” I thought.





Kimani’s backpack could have been sitting in a snake nest at that moment for all the hesitation I was feeling. Oh, dang it.... just open it and look. And when I did I caught a tiny woosh of air in my throat, followed by that strange muscle tightening that tells me I might cry. “She’s so beautiful,” my eyes said and all the rest of me agreed.

Curebie

Curebie... I had never heard that insult before. A blogger I read, Jo Ashline who tells it like she feels it over at “A Sweet Dose of the Truth,” apparently pissed off a bunch of people and got herself labeled as a curebie (as well as a whole bunch of other things).

I guess she earned this by getting all excited that her kid (nine years old with Autism) read his first word, and she yelled out something celebra-trashy along the lines of “Autism can suck it!” Once I started reading the comments and ensuing posts, connected posts, and rebuking posts, I realized that the Autism community is fractured much like the Ds community.

A couple years ago I wrote a post questioning whether or not I would get the “cure” for my daughter if one became available. The answer turned out to be a solid maybe.

Kimani was just nine months old when I wrote that post. Now three years later, I have a different answer. A resounding “Heck yeah!” (as long as it didn’t come with risks... I don’t take risks with Kimani, I just don’t.)

Does that mean that I don’t love her or accept her? No, it means I can separate the effects of an extra 21st chromosome from the other 46. I don’t see a possible cure as something that would be a magical re-do where Kimani swallows a pill and wakes up with 46 chromosomes and an altered face. A “cure” would likely be something that ameliorates the day-to-day effects of that extra chromosome. Maybe it would take away the risk of Alzheimer’s and the inability to articulate speech and replace it with for twenty or so IQ points. That is why I support organizations like Down Syndrome Achieves that are advancing research, legislation, and education for people with Ds.

Does that mean I don’t view Down syndrome as a blessing? Yup, I don’t. I do, however, think of my daughters as blessings. You understand... I don’t see my daughters as Down syndrome, instead I see them as people who have some differences caused by Down syndrome. Some of those differences are quite endearing and valuable, and I consider myself fortunate to experience a close relationship with my girls. So while I have been blessed by the people in my life who have Down syndrome, I don’t think them having Ds in itself is a blessing.





You know what I would like a magic pill for? TBI... traumatic brain injury... the result of meningitis, or high fevers, or deep freezes. To all the pediatric neurologists out there, please please I beg you, make me a Curebie.

A GOP Nominee of Our Own

With the glasses and the ponytail, I think she looks like her. She's stubborn, opinionated, and well-spoken like her. Could it be that I am raising SP’s mini-me?





(My husband says, “Nope.” ... said he sees no resemblance at all. Really?