Friday, August 23, 2013

First Week of Kindergarten -- Fully Included...

I had the chance to speak to John Michael's Kindergarten class today about Down syndrome (I don't think I actually used the term Down syndrome), how everyone is different, and that differences are what make the world such a great place. I also read the book, "My Friend Isabelle" by Eliza Woloson to the class. The kids were fantastic! Very quiet and attentive as they sat on the colored rug and I sat in the teacher's rocking chair.

I asked if anyone had questions, but at this age, they just wanted to tell me about their own siblings or friends... It was cute! One boy said his big brother is faster than him, but his feet were bigger. Another boy said that he is faster than his baby sister, who is 2 years old. Haha. Then one girl, right in front, said, "John Michael taught me how to dance." That totally warmed my heart. I'm not so sure what he taught her, but he does love to shake his booty and dance. I was also thrilled to know that he felt comfortable enough to do that at school...

I said my good-byes and the teacher sent an email with the letter (you can click to enlarge), as well as send home a hard-copy of the letter.

What's so amazing is that John Michael is the first boy with Down syndrome to attend this Catholic school. He has older siblings who've graduated from there and one sister who is in 3rd grade this year. The community loves and supports him and I often hear great things about John Michael. Sometimes, he gets in trouble, too. He was sent to the office today for kicking kids on the rug. He had a time out, but couldn't resist scooting his chair closer so he could continue to kick. Sigh. His teacher sent him to the office for some time away and she said he had a great day the rest of the day. Yay!

So, he made it through his first week of Catholic school, fully included without an aide. We are looking for a part time aide to support him in the classroom as things get more difficult for him. But for now, I will mark his first week as a HUGE SUCCESS!!!

Within 2 hours of the letter going out via email, I already had 4 lovely responses from parents in the classroom thanking me for taking the time to write the letter and share about John Michael, opening up dialogue right away. It's a win-win. The letter isn't something I wrote on my own, though, so I want to give credit where credit is due. A huge THANK YOU to Gillian Marchenko, author and mom to Polly with Ds, for sharing the letter on her blog for all of us to copy and use.

And if you check out her website and blog, there some great links for you to read on the sidebar as well, like 10 Things Not to Say to a New Parent of a Child with Down syndrome. :-)

Before I left, I asked the kids to be John Michael's buddies on campus. Everyone wants friends and he might need a little help sometimes. At least half the class said they would (that's a great start!) These kids will grow up with John Michael and Ds will be "no big deal" to them. Two boys, fraternal twins, have already told me that they want to be John Michael's friends. Soooo sweet. I feel so blessed!!

Stick around awhile and you'll see I'm all about educating parents who wouldn't otherwise know these things. Because 6 years ago, I was that parent... and no one took time to share these tips with me... so I'm paying it forward.

Have an awesome day!

Monday, July 22, 2013

Twinkle Twinkle, Little Star (John Michael and Luke duet)

Naptime and bedtime are sometimes challenging, but often they're magical around here... the boys LOVE to sing, cuddle and sing lullabies and I get the sweetest moments with my little guys when it's almost time to hit the pillow.  When Luke was a baby, he had a terrible time falling asleep, so I would wrap him snugly, cradle him in my arms and softly sing or hum "Rock-a-bye Baby" over and over until he fell asleep.  I was at my wit's end and that was the best I could manage ;-)  Well, it eventually started working and he would fall asleep within a few verses.  Today at age 3 he still requests the song and I can see his eyes getting heavy when I begin to sing it softly and slowly.  Kinda like a Pavlovian response to sleep, but it works!  

These days, the boys love to sing along.  One of my most requested songs is to sing "Stay Awake" from Mary Poppins.  I love it!  "Stay awake, don't rest your head.  Don't lie down upon your bed.  You're not sleepy as you seem.  Stay awake don't nod and dream..."  The boys often join in and sing with me (which is counterproductive to getting them to rest, but their stall tactic is also very sweet).  Other songs include, "Hush little baby, don't say a word... Mama's gonna buy you a mockingbird..."  John Michael knows EVERY. SINGLE. VERSE so this goes on for a while.  And we always end with Twinkle Twinkle, Little Star.  So here's my little stars performing their own rendition at Luke's naptime today.  It's also the first time Luke has gotten in the spotlight on his own and sung a song on video.  John Michael joins him for the 2nd time through.  Enjoy :-)  

I'll post more about the NDSC Convention and my take-aways later...  there's a great app you're going to love!



Saturday, July 20, 2013

Ds Parenting 101 and Handwriting Without Tears Workshops

This morning I attended two excellent workshops.

The first one was Ds Parenting 101: The Straight Scoop with Tools and Rules by Natalie Hale. It was based on her new book, "Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier". Everything she covered, particularly non-compliance, was applicable to John Michael and understanding oppositional behaviors. Yes, my sweet, angelic "happy all the time" child has quite a few stubborn traits and behaviors that are challenging us. I know, hard to believe LOL, since most of what I post has a positive spin on Ds.

John Michael is a very sweet, smart lovable boy, but he can be very non-compliant at the simplest requests. He knows the rules... Each morning he has to go potty, eat breakfast and get dressed for school. Some mornings he comes in our room at 6:15 for some cuddle time before our day begins. He always tells me, "Mommy, I love you so much!" I cherish these tender moments, but as soon as it's time to get up, he practically runs away from me to avoid his morning routine. Sometimes he does it all willingly and other times I have to assist every step of the way. We've worked with a behavior therapist, established a rewards system and still, it doesn't always work.

I think this new book will be great for giving practical examples of how to motivate your child. I like what the author said... You have to use humor and be permissive with their feelings, acknowledging when he doesn't want to do something and then give him a choice of two things he can do. He feels in control and you still win. I love her light-hearted approach yet she's full of wisdom from parenting a child, now a man, with Ds, ADD and oppositional behavior disorder. Looking forward to it!

The second workshop was called Scribble, Color, Draw: Key Readiness Skills Essential for Handwriting Success presented by Diane Eldridge, RN, COTA.

I loved this class! It was completely hands on and she taught us how to help our kids gain more strength for handwriting, how to write their letters in the most logical order and creating letters from simple wooden shapes, starting with the big line at the top. We talked about eye-hand coordination for coloring, writing and eventually drawing a figure of themselves. She showed an example of a boy drawing a stick figure of himself with just a head and sticks for legs. This is totally how John Michael creates a person, which is about a 3 yr old level. After doing a fun exercise on the floor by creating a "Mat Man" from the wooden shapes and setting it to song, the boy was able to draw a head, body, arms, legs, face and a belly button. I'm excited to try this with John Michael and Luke and see a before and after.

She also recommends breaking crayons in half so they have to hold it with a proper grasp and squeezing and pinching Play Doh for hand strength. She set everything to song and made it fun and light. I think that's the "missing link", so will definitely be adding song to our learning and coloring sessions. Finally, I learned that the best way for kids to write letters is not by tracing, but by imitating. So, I would write capital letters first or a word and he imitates on the line below using simple shapes of "Big line, Little line, Big curve and Little curve". Very simple, and very easy to learn.

That's all for now. I haven't figured out how to post pics from my iPad, but will as soon as I can.

Friday, July 19, 2013

Blogging guilt and the Barney song

Oh my gosh! I'm at the National Down Syndrome Congress convention in Denver and just left the Bloggers sharing session. I don't even feel like I can call myself a blogger when I haven't touched my sadly neglected blog since November of last year! But I was motivated to go anyway, in hopes of meeting IRL (in real life) some blogging friends I've made over the past few years.

I'm soooo glad I went! Not only did I get to meet some awesome blogging moms (and a brave dad who is going to start one), but I realized that I do have something to say that others might want to hear. A couple moms said, "I've missed your posts" and another reminded me that I sent her a presentation a while back that she has used for her own son's class and she was grateful.

My lack of blogging has resulted from having a busy life with 5 kids ('nuf said) and I'm on facebook more since it's instant gratification. I also started a business last year which takes my time and quite honestly, I often feel like I don't have good enough material for a blog. Today was a good reminder that people do want to read about IEPs, inclusion, behavior issues, sibling relationships, and whatever successes we are celebrating, even if it's not "all good news". Just to be real...

Of all John Michael's strengths, I'd say speech and communication are his greatest gifts. And being a singer, I always wondered if he would ever be able to carry a tune beyond a 3 note range. I'm excited to share his latest rendition of Barney's Theme Song, "I Love You". Thanks to Linda Nargi for encouraging making me post it on my blog. I do apologize that the video may not be embedded since I'm on my iPad and don't remember how to do it, but I promise it's worth clicking and listening. My big guy, now 5 1/2, can SING!!!