Last Early Intervention session at home

(Polly at three months old)

I remember the first time a therapist came to our home.  Polly was nine weeks old and just over ten pounds.  I was unsure about someone coming into our living room and working with my little baby and scared of Polly’s diagnosis.  I made eye contact with the therapist often, trying to guess what she thought about Polly, trying to figure out what she thought about me. 

As the months passed there in St. Joe, I treated therapists like bartenders.  It was like every week I was throwing down my cash on the bar counter (by letting them work with my kid) and then in turn they had to listen to me process Polly’s diagnosis through research on-line and question after question about her progress in her sessions all the while communicating just how unsure and frightened I was in the new role I found myself in.

Polly has worked with over twelve therapists in the last three years both in Michigan and in Chicago, at home and in a center based therapy settings.  She has laughed and played and cried and screamed and yelled and kicked and held hands and played ring around the rosy.  She has hugged and kissed and hid and helped for three years. 

I’ve done all that too.

Time passed and I slowly morphed from a frightened new mother of a child with special needs into a knowledgeable mom, ready to fight for her child’s rights, aware of the latest therapy and treatment options, up on the newest medical check list pertaining to Down syndrome, watching the therapists like a hawk to ensure the best therapy for Polly and head over heels in love with my little girl.

Just recently, in the last six months I’ve gotten comfortable sitting in the other room during a session, working on the computer or even at times reading a magazine but really still listening whole heartedly to my child’s session in the other room.

And today it’s done.  Next week is spring break for Chicago Public Schools and then Monday, April 13th Polly will go to preschool, three hours a day, five days a week. 

All her therapy will take place at school.

I remember thinking that these early years with Polly were going to take forever, and that indefinitely my life would revolve around her therapy needs.  But really, therapy did not become our lives.  It just became a part of our life, the new norm for our family. 

And the 0-3 years are done. 

In college I worked a stint as a custom service representative for Sears.  That’s a fancy way to say that I was in Telemarketing, which meant eight our Saturdays sitting in a cubicle making phone calls about tire service.

The script is still fresh in my mind.  I could pick up the phone this afternoon and do a perfect customer service phone call:

“Please listen carefully to your options and then answer… Did the service…

1.  Exceed your expectations

2. Meet your expectations

or 3. Did not meet your expectations.”

My baby is growing up.  My baby is growing away.

And I am so very proud of her.

So far my life with Polly has 1.  Exceeded my expectations.

(Polly’s last therapy session at our house four days before her third birthday)

News in general

…We might get to take the older girls with us to get Evangeline. They would just stay the first two weeks with Sergei and come home with him.  Then I’ll stay another three or four until everything is complete.  The funding is almost there to do it!

We are waiting for one last paper and then the beginning of the end will start.  We’ll ship our dossier to Ukraine and wait for a court date. 

In other news: Zoya is having a puppy dog 7thbirthday party tomorrow.  Her actual birthday is Sunday.  It’s puppy dog b/c that was the motif in abundance at the Dollar General and I could pull it off still with her as something cool.  So the eight little girls at the party are getting their faces painted like dogs, we’re serving cocoa puffs in brand new dog bowls and the entree is hot dogs, of course!

In other news: Sergei and I are going to a Gala Saturday night.  It’s a large fundraiser for school.  I am intimidated at such things but my friend Amy gave me great advice:  come an hour late.  That way, everyone will have already had a drink and there will be so many people there we will just blend in.  She said it’s easy to live early that way too.  Oh, so wise, Amy!

In other news: Polly’s birthday is next weekend, April 5th.  She is having a My Little Pony party b/c that was the motif in abundance at the Dollar Store three months ago.  I bought all the loot and put it down in the basement and am now trying to conjure up the needed energy to actually invite a bunch of three year olds over for another party so soon after Zo’s.  Polly could care less, really but I do have the stuff.  Hmmm…

In other news:  After Polly turns three she will start preschool five mornings a week in a blended classroom four miles from our house.  She can even take the bus if need be.  Whoa.  I think we’ll drive her thanks.

In other news:  There really isn’t any news about Elaina right now except that she has made folding the laundry her job and to date has folded four loads of laundry and placed the clothes on each person’s bed to put away.  It’s like Christmas for me every time she does it. 

In other news:  Sergei is doing well.  He started another class last week, chipping away one class a semester at a Historical Christianity Masters.  Funny, the guy dresses up in a suitcoat for class, for the zoo, for walks but not for Church when he’s preaching.  He’s so edgy!  Also, He brought me a dozen yellow roses the other day for no reason.  Wow!

In other news:  I am making time to write now.  There are a couple essays in the works and I am making plans to try to publish some things.  It feels good to do something outside of mothering and adoption and therapy and church.  Also, I am dying without coffee and am counting the days until Lent is over.  I know, very spiritual.

She’s working me out of a job

Most of Polly’s therapies are now at a therapy center.  She goes to a therapy preschool two times a week for two hours.  She’s at the center three more hours at various times for physical therapy and speech.

At home she sees her developmental therapist and her occupational therapist.  We have a little table and a chair she sits at for therapy time. 

In the past I’ve always sat in on her home therapies.  I learned what Polly was learning and then repeated therapy activities with her throughout the week.

Recently Polly has really struggled with home-based therapy.  She doesn’t want to work and assumes her new independence by geting up and crawling or walking away.  When I was close she would come to me and I would ease her back to her seat.

So for two weeks I’ve sat in the dinning room and worked on the computer while she had her session.

It’s been great!  She interacts with the therapist much better without mom right there, follows directions, stays on task better.

My girl is working me out of a job!

I’m so proud of her.

Mean Mama

I was a tad emotional last week. 

Lately Polly’s school and therapy times have gone, well, badly.

It is a lot.  She is in preschool two mornings a week, for three hours.  And a new class means new therapists and teachers, new activities, new socialization.  After the first two weeks, the honeymoon is officially over.  Polly’s having a hard time being the new kid in town around there.  And so she cries, hard, for a long time.  The last few times I’ve picked her up, the therapist gives me a tight smile and a grimace, “she had a rough day today” she says quietly. 

Then when she gets home she has to eat and take a nap in order to be ready for her home therapy sessions later in the afternoon. 

I’ve been close to losing it.  I just don’t know what’s best for her, how to help her through this rough patch, how to discern if this new schedule is too much or something she simply needs to get used to.

And now I feel really bad for the customer service representative from a XYZ organization that caught my wrath the other day on the phone.  He called just after I dropped Polly off at class as I was driving down the street. 

“Hello.”

“Hello.  May I please speak with Gill-anne Elaine?”

“Yes.  This is Gillian.”

“Joanne?  Is Elaine there?”

“This is GILLIAN, the person you wish to speak with.”

“Oh, sorry, yes, Gillian, I am calling from XYZ…how are you today?”

And this is when it got ugly.

“I’m fine (said with emotion) but I am not going to blah blah blah blah and I would appreciate it if you people would stop calling me every couple of weeks.” 

Click.

Oh my. 

I have to say though, I felt better.

But now I feel bad for that poor guy who was just doing his job.

That day when I picked up Polly she had a sticker on her shirt for participating well in class and making good choices.

Maybe I should try yoga?

Relational Capacity

I dropped my two older daughters off at day camp this morning.  They are part of Chicago’s six week park district program, 9-3, everyday, or I guess I should say as much as they want to go.  We’ve never done something like this before so we’ll see how it goes.

This morning after the girls’ hair was brushed to the side, after backpacks were stuffed with bathing suits and towels and water and sun screen, after Polly was dressed in oversized school t-shirt and buckled into her car seat, I looked back at my kids. 

Elaina was grinning ear to ear.  She was literally squealing, albeit under her breath.  She couldn’t wait to get to camp. 

Zoya was quiet.  She has not yet bought in to this whole day camp idea.  This morning before we left we stopped a moment to pray and she asked that we’d pray she’d make a friend.  One friend.

Elaina will eat up the day camp experience.  She is ready to make friends with every child there.  And I bet she does too.  Zoya will be happy to find one girl in her little group.  She will pointedly ask the little girl to be friends and then she will stick closely by this little ally through thick and thin; through the “getting to know you” time, when receiving her new t-shirt for the summer program, as she explores her first camp boxed lunch.

My kids’ relational capacities are significantly unique and completely different.   

And it makes me wonder.  What is my relational capacity?  What was my relational capacity before three children?  Before ten years of marriage?  Before 7 moves and six hours a week of therapy?

Honestly, I am not very good at friendship these days.  Of course I have friends.  I like the people at our church and I try to meet up with them here and there.  I have some great girlfriends from high school who still like me after sixteen years of friendship even though sometimes I don’t communicate with them for months. 

Some neighbors on our street have quietly moved over into the friendship category, not because of time spent together, but simply because I know I could ring their doorbell any time for a cup of sugar or call in the middle of the night if we need to take a kid to the emergency room.

But sometimes at night when S is gone and I am watching something on TV totally embarrassing to admit (like the Bachelorette, I know) a thought will pass through my mind, “boy, it would be nice to call someone right now, just to talk.”

I am not there right now in my life, though.  I am at my limit most days with therapy schedules and camp supplies, bills, cleaning, food, writing, there just isn’t much left for anything or really, anyone else. 

What about you?  How is your relational capacity?  Do you have a lot of friends?  One or two?  None?

Maybe I should invest more of myself in the people around me, people outside of my little nuclear family who are ready to be invested into.

Maybe tomorrow. 

What would you do with three hours?

S took Polly to preschool this morning.  They will not return until 12:30pm.  There’s a dishwasher to unload, two loads of laundry to fold and put away, junk piled up on the dining room table and dust bunnies monsters roaming around our upstairs floor, scoffing at the notion of a dust pan and broom.

With three young children, these times are rare.  In fact, I will not have this again for a while as tomorrow is Zoya’s last day of Kindergarten.

Here I sit with my coffee. 

What would you do with three free hours?

If you are going to post that you would clean, I urge you to click away.  I am just not interested in hearing that this morning.

In the Zone

This post is part of this weeks Hump Day Hmms.  Click over to read more about what others are saying about comfort zones.

Last Thursday night I went to a Moms Night Out for my kids’ school.  It took me an hour to figure out what to wear before I left.  It was not going well.  In a moment of pure insanity, I even tried on a pair of maternity jeans I had set out for a friend who is expecting.  While admiring the boot cut fit, I schemed about a shirt that would actually cover the elastic band around my waist.  Then I imagined bending over at the party and showing off my secret to neatly dressed, put together women and I peeled off the jeans and chucked them across the room. 

Going to the party was definitely out of my comfort zone.  

Which begs the question:  where is my comfort zone?

And the answer:  I have no idea.  I have not been comfortable for years.

There have been many changes in my life in the last six years.  Sometimes I liken myself to having gone through menopause several times. 

First we moved to Kiev, Ukraine.  Elaina was 2 1/2 and Zoya was 9 months old.  For two years my husband helped out with a church plant in another part of town while buying groceries, paying bills and looking after his little foreign family.  I studied the Russian language full time and learned to walk to the Metro station looking down at my feet.  Things that came easy to me, American mannerisms like smiling at strangers, wearing your shoes in the house and Kraft Macaroni and Cheese were boxed up and left in my mom’s attic over the garage in Michigan.

Time went on.  I tucked comfort around my children in our little seventies style apartment like a warm fleece blanket the only way I could think of.  I mixed our new culture with the old, pouring the American Happy Birthday song in with the custom of not wrapping birthday gifts in Ukraine.  We dressed the girls up in costumes for New Year’s Day and pretended it was Christmas.  I found the only store in Kiev that sold Lasagna noodles.

Everything I did in Ukraine was uncomfortable, until one day it wasn’t, and I was able to conjugate the verb ‘to buy’ in Russian’s past, present and future tenses.  After three years there I noticed friendly faces around me, offering to show me how to make a warm compress for my daughter’s cold instead of reaching for Tylenol.  We were part of a church that was growing closer to one another and to God, and my oldest daughter was learning addition and subtraction in her Ukrainian preschool.

I almost felt comfortable.  So we decided to try for our third child.

God blessed our efforts and along came Polly.  She was born there in Ukraine, three weeks early, in a private hospital that looked a lot like our western hotels.  After her birth I had to learn a new language.  I had to find out how to speak special needs; words like Down syndrome, IEP, therapy, hypotonia.

We landed (twenty days overseas in the NICU, packing our lives up once again, saying goodbye to our church) in Michigan and attempted to find comfort in our new surroundings once again.

I thought that moving back to the States would be easy.  I already spoke the language here.  Only, my time overseas changed me.  A large part of me identified with Ukraine.  I was out of place in church.  The music was loud.  There were too many faces.  Every thing was so big and people had a lot of stuff.    I came home from Zoya’s preschool round-up drenched in sweat.  I remember standing in the school supplies aisle at Walmart, overwhelmed by the variety of paper and pens and lunch boxes.   

And then last summer, we moved again, from Michigan to Chicago, from rural to urban, from middle class to upper class, from being average church goers to my husband pastoring a church.

And once again I am out of my comfort zone.

So, you see, there really is no such thing as small talk in my life.  Which is why I dreaded the Mom’s Night Out last week.  My small talk either gets big quickly or it gets quiet.  Simple questions like, “where did you live before you moved here?” or “what does your husband do for a living?” or the ever present, “tell me a little bit about your kids?” do not have simple small talk answers. 

After I found an outfit that fit, the party last week wasn’t that bad.  I made small talk.  The questions came up and I answered shortly, “we lived in Ukraine,” “my husband is a minister,” “I have three girls; seven, six, and two.”

My life has changed so much and so quickly, at times it’s like watching a three ringed circus.  I have the poles and the plates, I am just having a hard time getting them all to spin at once.

In the midst of all these changes, I am finding that comfort is not really the point. 

I speak different languages; special needs, English, Russian, Christian, urban, rural.  And every language molds me a bit more into who I am to become. 

I guess I am learning to speak small talk here in Chicago as well and to be OK with it.

That, in and of itself, brings me a bit of comfort.

No Problem, Mom!

Polly did great in her preschool class this morning.  During breakfast I talked to her about school, how she will get to play and have a snack and color and listen to music.  She just looked at me out of the corner of her eyes and blinked. 

I was nervous.  I envisioned her crying, her little chubby two-year-old fist gathering up the material of my shirt into a stress ball.

When we walked in through the door of the therapy center she was unsure, thinking this was maybe another greatly feared physical therapy session. 

I hurried her back to class.  She scooted her little walker in and waved to everybody and smiled and laughed.  Kids, well, they were sad.  Some were being soothed by teachers, others were laying on the ground banging their legs, “don’t make me stay here.” 

Maybe the sad kids would cue Polly to be sad too?  I asked her if she wanted to sit at the table with some other children and color.  She nodded yes.

She colored and I loomed over her like a dark cloud. I wasn’t ready to leave. I clicked a few pictures then looked around and noticed I was the only parent left in the room.

The teachers gently shooed me out and closed the door.  “She’ll be fine,” they said.

I went to my car, alone, without a diaper bag, without holding a chubby bottom, without two little arms  tight around my neck, without a walker.

I picked her up at Noon and she was still smiling.  She was fine.  She was better than fine.  She was great.

I place limits on Polly every day.  It’s unintentional, but true.  Our little chat this morning prepared her for class.  She had understood everything I told her.  She was ready for school.

This kid amazes me.

I’m Schooled

Tomorrow Polly starts her preschool play group.  For six weeks this summer, on Mondays and Wednesdays, she will join eleven other two and three-year-olds from 9am to Noon at her therapy center.

A few days ago we got a letter from the preschool with the list of school supplies needed for the first day.

School supplies!

Polly’s going to school and she needs school supplies! 

We got her clothes ready, bought a non-perishable snack for twelve and a quart of apple juice.  A change of clothes for her are labeled in a large zip lock freezer bag and ready to go.

I really can’t believe it. 

The Mom at Gymnastics

The names in the following post have been changed to protect those unknowingly written about on my blog.  The people are real but their names are different.

—————————————————-

You never know who you end up sitting next to, or what their story is. 

I posted about Elaina signing up for gymnastics.  I waited outside her class with a book on the first day.  I wasn’t very interested in reading.  The book wasn’t that good.  

Another mother sat next to me.  Her book looked better than mine.  I asked her about it and we chatted a bit here and there.  She laughed when I overheard someone mention that the gymnastics class was for experienced gymnasts.  The look on my face communicated that my child was a beginner. Elaina would just have to pretend that she knew what she was doing.  

I remember thinking this lady was nice. 

The next week, a rainy Tuesday, S had a meeting.  So off to class we all went; me, Elaina, Zoya and Polly.  I had a headache.  Polly was fussy.  Zoya decided spur of the moment that she really wanted to take gymnastics instead of ballet so her nose was out of joint. 

We shuffled up the cement stairs and into the building.  Polly straddled my hip, coat unzipped and falling off; her hair was coming out of the ponytail on the top of her head.  It hung in her face.   

The class is just an hour, but I wasn’t about to hold Polly on my lap for the duration.  We couldn’t play outside at the park because of the rain and the floor looked pretty dirty, well, dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees.  Plan B was to drop Lainie off and head home.  Sergei would pick her up later. 

The nice mom with the good book walked in a few minutes after us.  Immediately, she noticed Polly. 

“You’re the minister’s wife, right?” 

I was surprised.  Most people who know that S is a minister try to avoid the topic. 

“Yes, how did you know?” 

“I’m Sarah, Charlie’s mom.” 

My mind jogged back to last summer.  We were new to Chicago.  One day S came home from the park with the girls.  He told me that a lady came up to them.  She wanted to meet Polly.  As they talked, he found out that she, too, had a child with Down syndrome.  But her son had serious health issues, and he passed away. 

“She gave me her phone number and wants you to call her,” he said. 

I was scared to call.  While punching in her phone number on my cell, I took a deep breath.  Waiting, I looked out the window.  The view was still new to me.  The Japanese maple tree planted in front of the porch was in full bloom. 

I left my name and number after the beep. 

A few days later, she called back.   

It was getting dark outside.  All the windows were open.  People chatted as they passed our house on the way to a restaurant or a bar.  S figured out how to get a few stations in on the TV with the rabbit ears and we were watching a rerun.  I can’t remember what show it was.  But I do remember our house was barren.  The living room held two chairs, empty bookcases, the old television.  Boxes lined up against the wall. 

We talked about Polly for a little while. I briefly covered our history, …lived in Ukraine for a few years as missionaries…had Polly there…she was very sick at first, in the NICU for twenty days…on the sixth day a blood test confirmed the Down syndrome…six weeks later we were on a plane, headed back to the States, primarily to care for Polly, holistically, because we all needed the care.  We talked about Early Intervention in this area and about therapists who were good.  I wrote down her recommendations. 

Then I asked her about her son.   

And she began to cry. 

“He had a lot of things going on.  His little heart just couldn’t take it all.  When we found out he had Down syndrome, I told my husband we could handle this.  I knew that we would have struggles, but I didn’t think Down syndrome was that big of a deal.  But his health issues were something different, entirely.” 

After Charlie died, Sarah started a preschool named “Charlie’s Place.”  The goal of the preschool is to provide a safe, learning environment for all children.  Sarah’s dream is to see the preschool integrated with typical kids and kids with special needs, so that they can learn from one another. 

That evening, sitting in the dinning room, in the dark, I said something to this mother that still haunts me sometimes.   

“It’s taken me a while to grieve Polly’s diagnosis.” 

I did not decide to grieve.  When Polly came along it’s not like there was a drum roll somewhere off in the distance.  I did not say, “And now, officially, I will fall apart.”  It happened gradually.  It was like a small cloud, quietly, most assuredly taking the place of th sun, until you are left in a shadow.  

I felt my heart sort of tip a bit after the words were out of my mouth.  I gasped.  I was ashamed.  This woman was actually grieving her child.  She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.   

These are the things I’ve been thinking about this week: Writing about Emma and then, Ella, running into a mother who is bravely living life despite her great loss.  Walking around the neighborhood, pushing Polly in her pink polka-dot stroller, Lainie and Zo leading the way with their brightly colored helmets, peddling as far away from me as they dare.  Indubitably stopping at a street corner. 

I can’t help but pay attention to the blessing of health.  And at least, for today, not take it for granted.  I’ll clap for Polly in therapy every time she puts another block in the bucket.  I’ll act silly, smile and dance around when she cruises up and down the couch.  I will let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading.  I will not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.   

Polly’s face lights up when her favorite therapist walks through the door.  The one who lets her pick what to do next, who applauds after an impromptu song, who lets Polly pick the same book every week, because she knows it’s her favorite.  They like to play with playdoh together.  “Rolling, rolling, rolling, rolling, roll it out, roll it out.”

This is one of the therapists Charlie’s Mom recommended.