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.

10 Reasons You Wish You Were A Special Needs Mom

The truth is there are advantages to having non-neuro-typical kids. Here are ten reasons why you should be envious of me.



1. I have been saved from life as a shallow Burb mom. I was well on my way there with a husband, a house, a great job, two perfect sons, and a well-used gym membership. Kimani exhumed my deepest self.

2. My parenting is beyond reproach. No one dares to question what I feed my kids, how I discipline them, or any other aspect of how I am raising them.

3. I have x-ray vision. I can see disabled people. In fact, I even had a conversation the other day with a young man in a wheelchair who has CP.

4. I am a badass soldier in an army of fellow parents and advocates. At any time I can call on them for expertise and support. Our sheer numbers are both inspiring and intimidating.

5. Funny stuff happens all the time at my house. Just this morning little Autumn was helping me do dishes by moving things from the waiting side of the sink to the washing side. She carefully handed over silverware, cups, straws... until she got to the pink rubber spatula. That she promptly stuck in her mouth and slurped on.

6. There is a special place in Heaven for me. No matter my beliefs or my constant sins, I get to go to straight to Heaven when I die.

7. I am capable beyond everyday social and cultural expectations. Fate challenged me and I rose up to it. I found that the embers of love and pride are stoked by what is.

8. I can brag unabated about my kids, any of them, and no one will fault me for it.

9. We can do Disney, Universal, Busch Gardens, et al, with no lines, no waiting! And, if I wanted to, I could rent out Masha with me as her nanny and make a killing riding amusement park attractions all day.

10. There is something terribly satisfying about living a life of difference. I try not to let it go to my head but I can’t help feeling like I have more than you. I have a piece of the mystery you cannot even imagine correctly.

Authenticity and Vulnerability

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

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

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

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

It's a Hop!

Guess what? October is National Down Syndrome Awareness Month. This means that we-who-love-someone-with-Ds will go out of our way to tell those of you who may not even know anyone with Ds what its all about.

This year my friend Meriah (With a Little Moxie) and I will be hosting a Ds Awareness Blog Hop (beginning Oct 5th) as a part of the T21 Writer's Alliance.

First things first: What is a Blog Hop?
A blog hop is when a bunch of bloggers share their posts at the end of our “hopper” posts by entering their url and blog name in a “linky”. Once a fellow blogger submits their link, it comes up as a part of a collected list. From the list, visitors can click and check out the writers on the list to read their posts.

I have never hosted a Blog Hop before but I am pretty excited to do it. I enjoy reading all my friends posts and having them all linked together is such a great way for we slackers to catch up with everyone.

October Down syndrome Weekend Blog Hop
The point of the October Down syndrome Weekend Blog Hop is raise awareness about life with Ds, connect the Down syndrome blogging community, and to inspire each other.

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

For Those of You that Like Prompts
Ellen Stumbo has shared optional prompts for the hops. They are:
Oct 5 – 7: A defining moment
Oct 12-14: If I knew then what I know now
Oct 19-21: Celebrating milestones
Oct 26-28: What I look forward to

Those (wonderful) prompts are entirely optional: take ‘em or leave ‘em.

Blog Hop Button

<a href="http://theunknowncontributor.blogspot.com/"> <img src="http://farm9.staticflickr.com/8456/8030173311_c6e1064e3d_m.jpg" alt="T21 Alliance Blog Hop" width="150" height="150" /> </a>

Share this Hop! The more the merrier!

Blog Hop Code
There will be a link "get code" link at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

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...

Pro-Choice/Life/Adoption Plea

It is that time of the election cycle when abortion becomes a hot topic again. When does life begin, and who has (or does not have) the right to end it... and where is the line drawn between the right of the mother to not become a mother and the right of the developing baby to become a full-fledged infant?

I have said it before and I will reiterate it now, I am pro-choice. I wish that every pregnant woman could choose to continue forward, but I get it... I understand the many reasons why some can’t or won’t. And as long as that decision is made before 20 weeks, I am ok with other people deciding what is best for them and theirs.

I wish the pro-life folks, those that cannot reconcile the willing destruction of a fetus with their beliefs, would turn some of that compassion and urgency to help toward those already born and wasting away in orphanages and institutions. I wish the pro-choice people, those who know how destructive it would be to force unwilling women to become reluctant mothers, would turn some of that concern and desire for personal freedom toward the existing products of those who were born unwanted. In fact, I plead with everyone to consider adopting before voting. And if like so many people you feel unable to adopt, can you donate toward to the families who are forging ahead with their pro-choice/life adoption agenda?

Whether you are pro-life or pro-choice, you can make a huge difference in the life of an orphan. I know of a beautiful family who is adopting. They are taking a blind referral... which means that they do not even yet know the child they will save. They are moving ahead on faith and the belief that every child deserves life with a family to love them. The only thing standing in the way of this real flesh and blood child getting the chance to live a full life outside of the institution that awaits him or her is money. This family needs to raise $7000 in September to be able to complete the lifesaving process they have committed themselves to.

This morning while I was drinking my sweet latte, I got thinking that if every person I know who cared about either side of the abortion issue made the choice to give just the tiniest bit, even just the value of one cup of coffee, a waiting orphan could be saved. So as you get ready to vote with your heart this Fall, can you make a difference with your wallet today?

If so, please donate what you can to the Lakes family. Anything, any amount no matter how small will go a long way toward saving the life of a child who is waiting... waiting... waiting for them and waiting for you.

I remember when we were adopting... I remember worrying about funding... I remember that amazing feeling when a stranger gave a little gift toward our mission. Now because of the generosity of family, friends, and strangers, we have two beautiful little girls. Two girls whose lives look nothing like they did two years ago. Thank you for helping us pull it off, and thank you in advance for helping the Lakes family to do the same.

The French Strangers - Part Two

Here is part one if you missed it.

We stood up together to make a run for it but the stranger caught me from behind. As he swung me around, he punched me in the face. His fist connected with my upper left cheek and for a few seconds everything went black with bright spots flashing. The hit should have sent me crashing to the ground but he still had a firm hold on me. Luckily, my friend was getting away because the other guy was not interested in attacking American women. He just watched.

She came back though. She rescued me. She whacked him in the face with her umbrella and got herself a massive kick to the stomach in return. It was enough to divert his attention and I scrambled backward out of his reach. Before he could decide which of us to come after, I screamed at her to run the other way and I ran out into the road.

I ran right into the path of an oncoming car, the only car on the road. It swerved, screeched to a stop, and two men got out. One of the men was the tram driver. I was hysterical. I told him over and over that a man had hurt me and I asked them “Where is my friend?” I don’t know how those men understood what I was saying in my broken, sob-filled French, but they did.

They wanted to take me to the hospital, the police station, or even home, but I kept asking them about my friend. So they drove up, down, and around the streets near the station until we found her. She (whose French was so much better than mine) explained to them what happened, and then she told them where we each lived.

You wouldn’t blame me if I packed up and flew home, especially if I told you I saw him again a couple days later on the tram, on my way to school, and he flicked his tongue at me like a snake. But as scared as I was to go out to class, I stuck it out. Eventually, I made friends and found out I was living in a French ghetto highly populated with Algerians. I learned that (back then anyway) the French and the French Algerians hated each other.

Oddly enough, it was a friendship I made with an Algerian shop keeper that kept me in France. His tiny grocery store was located on the roof plaza of the building just across from mine, accessible by a pedestrian bridge that was attached to our building a few floors below me. There was a butcher shop and a bakery over there as well, and that plaza was just about the only place I wasn’t afraid to go because I didn’t even have to go down out to the street.

The stranger who owned the grocery store was tall, well-built, with dark hair, dark eyes, and a beautiful smile. He made such an effort to befriend me, tolerating my immature French, asking me about myself in between explaining as best he could the difference between the zillion types of milk. He wanted to know if I was enjoying his country, and so I told him my tram station story.

It made him visibly angry. He brought his sister out from the back room to tell me in her broken English that he would take care of this problem for me and that I should not be afraid to go out. She said that her brother was my friend and that this meant that I would be safe anywhere in the neighborhood. She was right. I stayed in France until the following July and I never saw tram man again.

I’ve never stopped traveling, but tram man taught me quite a bit about how to do it. I’ve also never been able to kick the innate fear of strangers that most of us have but I do recognize it for what it is and find my way around it.

Crushing on Nietzsche

“Convictions are more dangerous enemies of truth than lies” -- Nietzsche.

TK and I were driving back from the mall today and she wondered aloud why “Satanists” would choose to be Satanists. “After all,” she mused, “Satan only exists if you believe in God, and if you believe in the existence of God, why would you choose the loser?”

Then she rambled on that maybe you would choose Satan if you believed that stupid Italian poet who wrote about the seven circles of Hell where people get to pig out and have sex all the time.

I opened the window, poked my head out, and yelled up into the air, “Did you hear that, Dante? She called you stupid!”

“Well don’t you think he was?” She asked.

“I think you need to read The Inferno,” I replied.

Then I expounded on Dante’s brilliance all the rest of the way home. I promised to fish out The Inferno for her which is how I found myself in the garage digging through boxes of my books, stumbling upon Nietzsche’s Human, All Too Human...

I abandoned my search for Dante (there are a lot of boxes out there, let me tell ya) and offered her the Nietzsche book as an entertaining substitute for now. She opened it up and read me the quote above. “What does he mean?” she asked me.

As I explained my take on his words, yesterday’s post came to mind. Oh yes, our convictions certainly are more deadly to the Truth than any simple lie could ever be. Lies are easy for the Christian to see through, but our convictions can twist the path to the Truth, our convictions can lead us to hurt each other, and our convictions can turn people away from God.

(Note: There are actually nine circles in Dante’s poetic vision of Hell... perhaps she had it confused with the seven deadly sins...)

The Best Christmas Gift of All

It happened. It finally happened. And when I heard the news yesterday, I had chills. Tears welled up in my eyes and I thought, "Oh my God, yes yes yes!"

Anya has a family. Anya has a mama and papa coming for her. Anya's life will be saved.

Thank you God for answering my prayer. (And thank you imaginary Santa for granting my Christmas wish.)

[Need to wrap up 2010 with a last minute tax deductible contribution? Donate to Anya's grant fund and help bring her family to her.]

Honesty, Authenticity, and the Pursuit of Truth

“I love your honesty.”

I like that comment, and I have gotten it a couple times after I left some blood and guts on a post or two. When I read that type of comment, I think maybe, just maybe, I successfully reached a place in myself that is the most authentic part of me. The writer in me would like to go there more often.

One time a person commented on my “We’re Not in Kansas Anymore, Toto” post and told me that maybe I wasn’t being honest. That person had read around this blog and felt what I like to refer to as the undertow of a blog. The undertow, the part I didn’t know that I wrote, or perhaps left out, and the supporting pieces that often have their own unintended message. That person was very perceptive, and challenged a belief I have that isn’t set in stone.

Starrlife just wrote a post titled, Blogging is Not Journalism 2
about another blog author’s post titled Truth in Blogging...

“Does it matter if truth creeps into fiction or fiction creeps into truth?”

“I like blogs that have that authentic feel, that grain of truth that is universal and transcend this issue. I like to think I can perceive those blogs. Do I? Can you?”

I am guessing that many of us have different motives for blogging, but most of those motives likely have something to do with authenticity, honesty, or truth... all different birds indeed. We have something to say, something we believe to be true, and we want to share this truth in order to have some effect in our sphere of influence.

But what if something in your blog’s undertow tells a story that is different from the one you are intentionally writing? What if you hear “I love your honesty” and “I don’t quite believe you” after the same post? What if someone questions the truth of some of your personal claims? Can one be honest and authentic but perhaps blind to certain truths? And does it even matter what is personally true and what isn’t, so long as the writer is being genuine and having a positive impact?

Most of the time I don’t think it matters that a writer is rarely able to completely pull off Shakespeare's “To thine own self be true” advice on a personal blog. As long as you mystify me, rock me, make me think, or drown me in beauty... I am happy to have visited you.

But what if your undertow is beginning to separate a group of people that I am very plugged into and proud of? I guess I then become one of those commenters who asks you to dive into it and see where it takes you.


(I would love for this to be a conversation but no unsigned anons for this one please.)

In The Moment

“Be in the moment,” Anonymous said, and I listened.

So now maybe this...



will remind me of this...

A Very Special Gift

Ruby’s big brother Grady has an amazing ability to draw. He has decided to use that talent to help save Yana, a little girl in an Eastern European orphanage who has a family committed to her. Grady is donating a custom 5x7 single subject drawing to the winner of Yana’s 100 Good Wishes fundraiser.

Here is how it works. Donate any amount to Yana’s 100 Good Wishes fund and you will be entered to win. Once the 100 wishes are filled, Lisa (Yana’s mama) will put all the donor’s names it a hat and select a winner. The winner gets to send a photo to Grady and he will create a gorgeous, one-of-a-kind graphite pencil drawn replica of it. This gift is valued at $100.

Don’t miss your chance to win something special from this up and coming amazing artist. Check out more of Grady’s work on his blog, The Way of the Pencil.

Am I Crazy?

Many many people have asked if my husband and I are nuts for adopting two Eastern European orphans with Down syndrome. They try to say it in a joking manner, but they are implying that maybe this isn’t such a good idea.

Mallory is three years old. On her 4th birthday she will be institutionalized. Have a look at her future.



I am not exaggerating. Read all about it here.

Am I crazy? No I don’t think so. Can you look at that picture and read that post and do nothing to help the families who are willing to take these children? Can you turn away and forget what you have seen? Are you crazy?

If 1000 people throw in just $25 each, one less child ends up tied to a metal crib for life. We need your help to save these children:
Mallory and Peach


Yana


Makayla


Josiah


Want to do even more? There are lots of families on Reece's Rainbow who are in the process of saving orphans. Go visit them and show them some tax-deductible love.

Blood Brothers

As a kid there were a handful of times that I cut my palm and smushed it against a friend’s matching wound to seal our alliance. Only the coolest, most trusted buddies became my blood brothers this way. Then the Eighties brought aids to light and my sanguinary relationship building came to a halt.

I had all but forgotten about that ritual until the other day when a blogger I know only through our various online relationships made an extraordinary promise to me. She pledged to make a modern-day blood sacrifice that will be added to my own personal sacrifices to accomplish something that will be life-changing.

We are blog sisters, friends, mothers, advocates, and educators walking down the same road of life together. Her son and my youngest daughter brought us together in this exclusive, invitation-only club. She knows certain private details of my life that are written on my heart because she has read them off her own. She recognizes my pain, and feels my pride. She dreams my dreams and wakes from my nightmares.

One simple genetic hiccup has given me a new sister, and she is worthy of a bloody high-five.

The Betrothal

Before Kimani was born, I stressed about such things as whether she might go to college, or get married, or drive a car. My husband, who is the more relaxed of the two of us, was convinced she would do all those things. I let him rest in his denial...

Fast forward a year and a half. Did you know that lots of people with Down syndrome get married, mostly to each other? How fitting that such trusting and guileless people should find love in each other.

There are a lot of boys out there that could end up the lucky man... There’s Finnian, Sheridan, and Charlie just to name a few... but one little guy has already captured this potential MIL’s heart... and his name is Ozzie.

(Those who really know me well are singing... “Oh no, oh no, here we go now....”)

No, not that Ozzie... this Ozzie.

Oh wait... that was before she kissed him. Here he is in his princely form.

I met his dad out in blogland a while ago. We became friends and since then our families have had the good fortune to be able to meet up in NYC at the Museum of Natural History. It was Kimani and Ozzie’s first date ♥ ♥ ♥ Aren’t they cute together? Don’t you just love how they are checking each other out?



Ok, so she looks a little wary of the situation but we have plenty of time for him to grow on her.

Somewhere in Kazakhstan...

There is a little girl named Jasmina who is waiting to be adopted. She is a beautiful child who has Down syndrome, and she is the only child with Ds available for adoption through Reece’s Rainbow in Kazakhstan. More than anything I would like to be able to give this child her forever family for Christmas. But I am not God (or Santa ;-) and I cannot grant her wish with just my will.

I can donate to her adoption grant and I can ask you to consider this gift as well. If you have anything left in your charity budget this year, please give to Reece’s Rainbow on behalf of Jasmina or any of the angels that are hoping to be saved from life in an institution.

Reece’s Rainbow accepts PayPal but prefers checks to save on processing fees. If you are going to send Jasmina a Christmas gift for her fund, please make the check out to Reece’s Rainbow and put Jasmina’s name in the memo. Mail the check to: Reece’s Rainbow, PO Box 4024, Gaithersburg, MD 20885. Thank you.

May you and yours be blessed during this wonderful Christmas season.

Making Me Proud

I can only hope my sons will grow up to be like this kid. If you care at all about me or my daughter Kimani, please take ten minutes out of your day to watch this video.