2 calls in 2 weeks. And a whole lotta grace. (And a Playhouse!)

It hasn't been an easy month. And I don't say this because my vacation fell through or because birthday plans were a bust with the family up in Elkhart. (I don't miss how lake effect snow can change plans so quickly.) Luckily, compared to last year, the winter here has been bearable. The kids are healthy and happy. I still received loads of texts and messages, 3 homemade cards, and even a pink cake pop for my birthday.

But I've also received 2 calls from the principal in less than 2 weeks time. Alexis has been on a roll.

I had heard multiple concerns from Lexi's kindergarten teacher about how, despite the great strides Alexis is making with transitioning from one subject to another, she's not gaining academically. After several hours of observing Alexis in class, I saw the teacher's concerns. Before I had a chance to get my thoughts in order, the first call came from the principal with new concerns regarding her safety. Alexis was leaving the classroom and the lunchroom unnoticed. She's a smart little cookie and would wait until no one was watching and head out into the hallway. Luckily, once she reached the hallway, she would wait there for someone to find her.  The principal asked to move up her annual IEP to the next week.

Oh, those blasted IEP's. So necessary, but I'd rather have a root canal.

Prior to going into the IEP, I made my notes, I did my research, and I said lots of prayers. As someone who has some issues with anxiety, my blood pressure medication wasn't cutting it. Despite having an incredible team to work with, I feel like I'm walking into the principal's office. I worry that I won't articulate my thoughts in a way that will benefit Alexis. I panic at the thought of potential conflict.

When I first walked into the IEP room and was surrounded by teachers, IA's, resource, therapists, and administrators, I told them how much I appreciate working with people who I know genuinely have Lexi's best interests at heart. I also told them that they still made me want a shot of tequila and a Xanax.

The IEP was a success. After 3 hours, we had added significantly more one on one time to help keep Alexis on task in the classroom, help her academically, and keep her safe. J and I are happy.

We are still waiting for the increased assistance to start, as the school goes through the process of bringing someone on (or transitioning their staff--we're still waiting to hear the specifics.)

But last week brought another call from the principal. Alexis had thrown books at multiple kids, injuring one of the girls under her eye. And of all the kids to hurt, she hurt the little girl who loves her the most, the girl that Lexi talks about at home. Alexis made a trip to the principal's office and apologized to her friend. Alexis spent the rest of that school day removed from her kindergarten class and with her resource teacher.

Anyone who knows Alexis knows that she's not a violent or aggressive or malicious child. While I may sound to some like a delusional parent, I have no doubt that she wasn't trying to be naughty. At home, the boys will occasionally rough-house and while I do believe that I need to let boys be boys to an extent, I have now made it really clear that they can no longer do this in front of Alexis. I even went so far as to make Blake take a brief time-out following a minor lapse in judgment just so Alexis could witness a punishment immediately following the crime (with a quick whisper to Blake that I needed his help in setting an example for his sister).

When Alexis got home from school that day, I sat Alexis down on my lap and expressed my sadness about her bad day. It's hard to know how much Alexis understands, so I make my statements as basic and to the point as possible. And as I told her of my sadness, I started to cry. Alexis was stunned. Her chin quivered as she patted my shoulder, and it probably made a bigger impact than anything I could have said. I just hope she related my sadness to her behaviors.

There were other repercussions to her behaviors that day, mainly the removal of all electronics, as the ipad serves as our greatest currency. Since the behavior is now behind us, we do a lot of talking about being nice, being gentle, and being a friend. She returned to her class the following day and had no incidents the rest of the week.

photo courtesy of Lexi's speech teacher.

On Friday I saw the mom of the sweet little girl that Alexis hurt. I apologized, felt terribly embarrassed, and fought back tears. Oh, the grace of that mom. She laughed it off, insisted that her daughter was fine, and even told me that her daughter came home and said to her mom, "Mr. (Principal) lied, mom! He told Alexis I wouldn't be friends with her anymore and that's not true!" Oh, the grace of that child.

I'm relieved that this happened before the start of the increased assistance that Alexis will soon be receiving. I'm relieved that when we're in the depths of dealing with the negative, I still get texts from the teacher saying, "On a positive, she did her very best work this afternoon! Swear it!!"

*****



On another note, after almost 2 years of fundraising, planning, and building, GiGi's Playhouse Indianapolis is open!

I've been so lucky to meet and work with the most incredible group of people. And I've learned so much. I've never served on a board before, and to be able to serve on a founding board has been exhausting, educational, emotional, and so rewarding! We celebrated our grand opening on January 24 (Blake's 10th birthday!) and started our programming earlier this month.

Literally, larger than life! Alexis's picture in on the front of the Playhouse!

All that has been happening with Alexis at school makes me that much more grateful for GiGi's. Alexis can go there and socialize with peers, learn and grow, and I'll never have to worry about an IEP or a call from the principal. And I don't need a shot and a Xanax! I can meet other parents who might have similar struggles and we can discuss our challenges and celebrate accomplishments.

Alexis and about 500 others all helped cut the ribbon to open our doors for business. Photo cred: PCB!

Now that our doors are open, it's full steam ahead in planning our Gala. GiGi's programming is free of charge for all individuals with Down syndrome and their families, so the success of our gala is imperative. Come celebrate with us on March 14 at the Indiana Roof Ballroom with cocktails, dinner, silent auction, a band, and more! We'd love for you to join us! Tickets are available at: http://gigisplayhouse.org/indianapolis/gala-indy/

Kindergarten

Today started Alexis's 3rd week in Kindergarten.

Planning for Alexis's kindergarten year started well before the IEP meeting that took place at the end of last school year. There were many conversations with some friends who are on a similar path with their kids. I had a great relationship with Alexis's early childhood teacher over the past 2 years, and we were in regular communication about hopes, expectations, and realities. Walking into an IEP is extremely intimidating, even though "Team Lexi" is an extraordinary group. I truly believe that all those teachers, therapists, and administrators, want great things for Alexis. But I also know that they have budgets and pressures of their own. The IEP went incredibly well, with the only hiccup being that Alexis wasn't given a one-on-one aide. Being raised by teachers and knowing first hand how full their plates are, in hindsight I don't think I wanted that aide for Alexis as much as I wanted it for her future teacher. But as one of the teachers in the IEP put it, if we're going to see how Alexis does in a general education setting, Kindergarten is the place to try it out. So here we are.

Summer was short and crazy busy and fun and crazy busy.  I had plenty of quality time with my kids, but I was ready for school to start. I was ready to miss them again. So while I was highly anxious about Alexis starting kindergarten, the anxiety was tempered by my need for solitude. I put her on the bus, relieved to see the same bus driver as last year, swallowed a huge lump in my throat, and took a nap.

Pickle, Little Extra, and the Pirate (aka Nicky, Lexi, and Blake) are in 5th, kdg, and 4th.

What I wasn't prepared for, and absolutely should have anticipated, was how difficult it would be for Alexis to return home from school that first day and not be able to tell me a single thing about her day. She was happy, so that was encouraging, but even as impressive as her speech is, she couldn't tell me of any activities, any new friends, or about her teachers.

I gave her teachers a few days to adjust to the start of the year, but by Thursday I couldn't wait any longer. I emailed Lexi's teachers telling them how happy I was that Alexis was obviously enjoying school, but I needed details and information. I suggested a half sheet of paper similar to what we had used in early childhood: the teacher would circle if she played alone or with others, what therapy she had received that day, if she ate her snack or not, if she had any accidents, etc. I heard back from her teacher, Mrs. V, that day. She would be happy to send me daily e-mails of how each day went. Really? Wow!

The emails started off as general overviews of the day: Alexis traced this, she cut that, and other than taking her shoes off several times, everything was going great. They started sight words, Lexi likes recess, she's stinkin' cute, and she keeps taking her shoes off. It's been great hearing how, other than the constant removal of shoes, she seems to follow directions pretty well.

Last week I dug a bit deeper. I asked Mrs. V if Alexis was making any friends and how the other kids in class acted toward her. The response described how much the kids love her, how a little boy has made it like his personal mission to help her as much as possible, and how there are a few little girls who play with her. I also get regular emails from her resource teacher who works with her a couple hours a day. This teacher told me how there are kids who always help her at lunch with things like opening her juice box, children who remind her to stay in line when they're in the hallway, and kids who play ball with her (her favorite!) on the playground. I'm so amazed at how well things are going, not that it's all perfect. She still takes her shoes off regularly. One note late last week said, "she only had two time outs today." I'll admit to laughing.

So here we are, starting our 3rd week of kindergarten. Alexis got on and off the bus with a smile as usual. Soon after she got home, the email from Mrs. V came through. It still took on the same sweet and positive tone as the others, but immediately I could tell it had been a rough day. After the list of the daily events and activities, Mrs. V mentioned Alexis being off task many times as well as removing her shoes frequently. The kids would clean something up and she would dump it back out. She was redirected and would begin to cry and ask for Mommy. As I was reading the letter, I became anxious. I try to be positive, but I also try to be realistic and I knew the time would come that she'd show her stubborn and sassy side. The girl has an opinion. She wants things done her way. She can be a stinker. In so many ways, she's a typical 5 year old, but in other ways, she needs more guidance and redirection than other kids her age. So as I read this email, I started anticipating the worst. Is she too much of a distraction for these already overworked teachers? I'm so thrilled that she was placed in a general ed classroom, but I wait for someone to say that it's not working.

I teared up as Mrs. V continued on in her description of Lexi's bad day. After Mrs. V firmly redirected Alexis and the tears were flowing, the little boy who tries so hard to help Alexis came up and took her hand, telling her it was okay as he guided her to her seat. Another little girl came over and hugged her. Alexis was back to her usual smiles within minutes. Mrs. V also thought that Lexi just seemed tired. "But we were all a little sleepy today," she assured me.

I don't know this little boy that helps Alexis, or this little girl that hugged her. I don't know the kids that play ball with her or the child that helps her open her juice box. But this is inclusion. This is what I was wanting for my daughter. Inclusion is about so much more than the child with special needs being with "typical" kids. It benefits all these other classmates so much more than they will ever know. They are learning about acceptance and diversity. They are making friendships and learning patience. And she is teaching them. She doesn't know it and they aren't aware, but when Lexi's classmates are taught something and then turn around to help Alexis, it's reinforcing what they've learned. All kids should be so fortunate as to have a kid like Alexis in their class.

I think Kindergarten is going to be okay.

From our Indiana igloo...

Winter has been especially brutal this year.  I really do love snow and the cold (of course I hate frostbite and driving on ice, just as I hate draughts, sunburns, and heatstroke in summer), but I am very grateful that when the temps are this brutal and the wind gusts are making the house shake, that I'm able to stay home with my family and can enjoy looking outside from safe inside my warm and comfortable home.

The view from my kitchen, earlier this month.

With our school now being on a balanced calendar, we only have 8 weeks of summer vacation.  We've had countless 2-hour delays and 4 days (so far) of school cancellations that will have to be made up at the end of the school year.  So make that 7 weeks of summer vacation...

Looking out at the snow with her new bespectacled doll. 
The doll's glasses stayed in one piece for exactly 3 minutes.

Snow days can be exhausting.

We are lucky that the severe weather hasn't affected our fun activities.  We were able to go to Gatlinburg after Christmas and spend time with friends.  The boys ice skated for the first time and there was air hockey, bumper cars, putt-putt, and laser tag.  Our friends were in from Florida and so we got to be there for their first time seeing snow.

Getting all 3 both boys upright for a picture on ice skates was a process.



Alexis has started therapeutic horseback riding at Agape up in Cicero.  She was hesitant at first, but by the end of the lesson, she was holding onto the reigns, telling her horse to "walk on" and "whoa" and content with being up so high.  If you were to ask her what her horse's name is, she may or may not correctly answer "Seth".  Or she may tell you her horse is named Kendra.  Incidently, she also built a snowman named Kendra and has a doll that is sometimes named Kendra.  I'm flattered.



Nick is three games into basketball season and loving it.  His coach was also his coach from 3 years ago, and he is amazed at how Nick has grown and improved.  3 years ago, Nicholas was the one kid on the team who hadn't made a basket all season until the last game when he had a little assistance from the referees.  This year he's been one of the high scorers.  I wish I could say that he gets it from me.  He doesn't.  I can't help but wonder if now that he has glasses, he can see the basket.

Excuse me, but would that be my passive kid in the tie dye...being assertive? That's right.
 2 steals and 2 fouls during the last game. (And 14 points.)  And some seriously sore knees from diving after the ball so often.  Didn't learn it from me.

Finally, we celebrated Blake's 9th birthday over the weekend.  While the weather was terrible, most family members and some friends were still willing and able to drive to our home to celebrate.

 
Until next time...

5 years ago today, I got the call.

It was 5 years ago today that I got the call.  Jason was putting the boys down for their afternoon naps when the social worker called.

"Kendra, we got the results back from the amnio and there are 3 copies of the 21st chromosome indicating that the baby does have Down syndrome."  I was 18 weeks into my pregnancy.

I hung up the phone and stood in shock.  Jason came downstairs and I was able to tell him the news.  He went off to process the news in his own quiet way.  Oh let's be honest.  He heard the news, responded with, "really," and went to bed.  The man is one of a kind.  I made three very difficult phone calls to family.  I couldn't make it through any of those calls without breaking down.  I was struggling to get past this vision of Down syndrome I had in my head.  I was going to have a daughter who had special needs.  The vision in my head of the perfect family just died in the flash of a phone call.  I worked with people with special needs.  I wasn't supposed to have a child with special needs.

As a person who likes to have a plan, I sat on my couch for the next couple of hours crying, processing, and (because I'm a multitasker) making a plan.  Step 1:  I would give myself two days to grieve and cry and feel sorry for myself.  I was drained pretty dry of tears after a single day and, while still really struggling, ready to get off the couch.  Step 2:  Read up.  Reading all the medical things that might go along with D/s will scare the crap out of you.  So I cancelled step 2.  Step 3:  Ditch the plan and just go with the flow.  One day at a time.  And we did.

The next months were a whirlwind of doctors appointments, a diagnosis of duodenal atresia, meetings with doctors and surgeons, and realizing that Alexis's first several weeks would be in the ICU.  My doctor also put me on medication for high blood pressure.

It's so cliche, but if only I'd known then what I know now.  I wish I'd known 5 years ago how I would marvel daily at Alexis and all she can do.  I wish I'd realized how proud I would be of her, and how every little accomplishment warrants a dance party and ice cream.  (She dances while I eat ice cream.)  All I thought of 5 years ago was how her appearance would be different, how sick she might be, and what delays she could have.  If only I'd known then that while there are frustrations and stresses over things like therapies and IEP's, our day to day struggles are that of any 4 year old: limiting her time watching tv, making her stop stealing her brother's toys, and getting her to stop pulling all the toilet paper off the roll. I wish I had known then how perfectly "normal" she would be.

A little over a year ago I was invited to join a group of local moms that have kids with Down syndrome.  Primarily it's a group where we can go to vent, brag, or ask questions related to our kids and to Down syndrome.  The group has gotten so big that we've started a spin off group which has also quickly grown.  There have been a handful of moms recently who are either due to have or have recently had a child with Down syndrome and duodenal atresia as Alexis did.  It's one of the most therapeutic thing I've ever done.  I get the privilege of telling a young scared mom that Alexis has many of the same things that her baby has, and that Alexis is now a healthy, happy, social, and sassy 4 year old.  Hopefully those moms think I'm helping them.  They have no idea how much they're helping me.

My blood pressure is perfect now, thank you very much.

A Perfect 10.

A milestone was hit today.  My oldest turned double digits.  10 years ago today, my sweet, loving, smart, tenderhearted Nicholas was born.

Nicholas made me a mom 10 years ago today.  I was born to be a mom.  I am blessed to be a mom.

Happy birthday Nicky.  I am so proud of you.  I love you.  Thank you for making me a mom.

Chicago!



Chicago was fantastic.  I had a brief moment of panic when I pulled out my camera to take pictures on day 1, only to find out that my camera card was full.  I quickly discovered that there were numerous pictures of carpet, ceilings, and eyeballs.  The following picture revealed the culprit.

 

Case solved.

We headed to Chicago on Monday and made our first stop at the Museum of Science and Industry.  All 3 kids loved it. 

 

Some days we're still trying to figure it out.



l-r, Soldier Field, John Hancock, Lego Store, and the view of Willis Tower from our hotel room

I was a little worried/disappointed/irritated when I asked Blake early on in the trip, what his favorite part was so far.  His response was, "The Lego store!  It's just like the one at home at the mall!"

Shedd Aquarium



 

 







I was really excited to see the Willis (formerly Sears) tower.  As many times as I've been to Chicago, I'd never been up to the top.  It did not disappoint.  We all ventured out onto the glass ledge and the view was fantastic!

 





 



Willis Tower

Once we were done in downtown Chicago and ready to relocate to a different hotel, we had a few hours to kill.  We decided to check out the GiGi's playhouse in Chicago.  We had no idea what to expect, or if they were even open.  We lucked out because not only was it open, I got to talk to a board member, a tutor, and a couple of parents.  This was definitely the highlight of my trip.  I've been so excited to bring GiGi's to Indy, but now that I've actually been to see a GiGi's, I'm ready to ROLL!  (Notice the GiGi's donation link I added to the top right of my blog?)  I was also glad that my family could experience what it is that I've been talking about so much these past few months.

We relocated to our other hotel on Wednesday and it was a surprise to the kids that we were going to a hotel with a huge water park.  They loved all of it:  the wave pool, the many different slides, hot tub, kiddie pool, basketball court pool.  And an extra bonus was that it was so deserted, especially on our first day.  The hotel also had multiple shops, restaurants, snack bars, ice cream and candy shop, spa, arcade, duck pin bowling, and a kids craft and activity room.  The hotel was a big hit with all the kids.

 

When we got home, I asked the boys what their top 3 things were in Chicago.  Nick ranked his top 3 as the Willis Tower, the Shedd, and the water park.  Blake said that he couldn't decide because it was all so fun.  His answer was perfect, and much better than saying the Lego store that's just like the one in our mall.

 

Glad to be home.



Down syndrome in the news. Here's my hope:

I’ve seen several articles and news stories lately about people with Down syndrome who have been voted into their homecoming court.  I love these uplifting stories.  Usually when I think of Alexis’s future, I worry about inclusion or the possibility of being bullied, where she’ll eventually live, and what kind of college experience she’ll have.  These stories give me hope that her future will include late night YouTube chats with her BFF, school dances and boyfriends, just like her peers.  I love these stories, and I really do love that people forward them to me regularly, but for me, the one thing that would be better than all these newstories, would be for these stories to not be newsworthy.  I don’t expect it to eventually be common for kids with Down syndrome to be voted as homecoming queen, or to be a cheerleader, or to make the winning shot for their basketball team, but I can’t wait for the day when none of these things is such a newsworthy surprise.

But if Alexis is ever voted homecoming queen, somebody call Channel 8.

Not exactly homecoming material.  Yet.