Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.

This is about our journey and the [EXTRA]ordinary people we meet along the way.

Tuesday, January 22, 2013

Therathoughts - Start here

Therapy can be overwhelming. One of the best pieces of advice I have been given by another [EXTRA]ordinary Mom is to try and work it into your everyday life. Sometimes that can be done and other times, you have to be a little bit more purposeful in incorporating your therapy. In this section, I want to offer some of the ways I work on encorporating therapy in our everday lives and also how I make time for the more purposeful therapy. These are my Therathoughts!

Before I start adding my Therathoughts, I'll review our therapy plan. Right now, Wyatt receives Physical and Speech therapy through Cincinnati Children's Hospital and Medical Center. He gets a unique style of dual therapy in the same hour, where both the PT and the SLP are working with him at the same time. It's worked well for us thus far (and we will continue with this plan until it doesn't work well for us). He also see an Early Interventionist (read: early childhood teacher) once a month. So really, there is nothing too over the top or challenging with our schedule. No more than that of a typical child's crazy sports schedule or extra-curricular activity schedule. It's just that we started all this before he was one year old...not school aged.

Finally, I also want YOU to share your therathoughts! We are always looking at new ideas and ways to work on certian skills. So, please feel free to add in your ideas and tips on any one of the blog entries here. You may be helping another [EXTRA]ordinary Mom who is struggling with finding the right therapy modification or itdea for their child!

Thanks and I hope you find this useful!

January Mom of the Month: Meet Missy

Christmas season wreaked havoc on our family. EVERYONE was sick. Which meant, I got so very behind on a million things, including my Blog. I was supposed to have this Mom be the December Mom of the Month, but, alas, it didn't happen.

So without further ado, I bring you....

The January Mom of the Month: Meet Missy!

First Name:  Missy (Melissa as her formal introduction), a co-leader for the Eastside Mom's Group and Playgroup

Vivianne is my 13 year old.  She is in 7th grade at St. Ursula Villa.  She gets great grades and is in the Cincinnati Children’s Choir’s Con Brio group.  She is a sci-fi geek, loves Dr. Who, Les Miserable, and anything related to science. Vivianne is left-handed.

[On a personal note, V is awesome with kids and migrates to Wyatt anytime she is around him!]
Lilianne is 7 (8 on December 21). She is a 2nd grader at Ayer Elementary school. She is very social, and loves to be outdoors on the monkey bars or with her friends. Lilianne has curly hair.
Violette is 5 years old. She is in Kindergarten. She loves Spongebob, Brave, drawing (and coloring, and practicing her letters), Walter and the Muppets. Violette has Down syndrome.

Do you work or volunteer?   
I work full time for Gardner Business Media in Newtown. I have the privilege of working with my dad, my brother, and my three cousins, along with a wonderful extended work family.  We have media brands (think magazines, websites and in person events) in the coolest industries – manufacturing.  The individuals who use our products are the people who make the equipment that allows us to have all of the nice things in the world – medical devices, energy, airplanes, electronic devices, breast pumps (yes, Medela has subscribers to our magazines,) cars, etc..

How many years have you been involved with the Eastside or Extraordinary Friends Mom’s group?   
I think I went to my first playgroup about 6 weeks after Violette was born. I was scared out of my wits.  I remember looking at all of the “Down syndrome Awareness” ribbons on the back of the car outside.  UGH.  I didn’t know if I was going into a bunch of depressed, sad, crying women, or what it would be like (I think I was picturing a sad support group where people talked about how hard their lives were.) I scrambled my courage up, took Violette out of her car seat and said “Well, Miss. Violette – let’s go meet your people!”  Violette was too little to “play,” of course, but I got so much out of it. I remember meeting Kristin, and Lisa Arnold.  All I wanted to do was stare at the kids – just watch them. I was totally tongue tied. I remember watching Sophia Arnold and saying “She seems so “high functioning””  Lisa’s response is something I’ll never forget – she said, very kindly – that she really didn’t like that phrase because it really didn’t mean anything to her. Sophia did very well, but so did many of her other friends with Down syndrome, and wasn’t a good descriptor of all of the strengths and weaknesses that her child had.  She gave me a lot to think about. Everyone was so friendly, and kind. It was a very happy, safe place to be.  I felt like I was finally someplace where I could see life where I’d move away from my fears about her diagnosis.

Why you like being a part of this group?   
See my answer above. I have made friends with a much wider group of people who I adore.  I don’t feel alone with Violette’s diagnosis. My typical children get to see that having a sibling with Down syndrome isn’t unusual. I also like that someday when Violette is an adult I will have many friends who will be comfortable talking about and collaborating with on issues related to being an adult – housing, social life, work.  I think we are all stronger for each other! (My personal top 12 list for participating in your local group: http://yomammamamma.blogspot.com/2010/11/top-12-reasons-you-should-participate.html)  Oh, plus we have so much fun and go so many great places!

Best advice for new parents of a child with T21:  
 I have pretty much everything on my blog on that subject:  http://yomammamamma.blogspot.com/2011/05/my-favorite-posts-for-new-moms-with.html

[Missy has an amazing Blog. Really. Read it, like, now.]

Greatest joy in having a child with T21:   
Violette is a really funny, fun person. She loves adventures, and always has a funny look at things. We laugh so much with her.  I enjoy just hearing the next thing that is going to come out of her mouth.  She’s had a few classics, like “Nice try, Captain Loser” to her father, and “Mommy, you a SASSYPANTS.” Also love watching her eat ice cream.  And touching her smooth smooth skin.  And looking at her perfect eyebrows.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?   
I think I am fascinated right now –at this moment - with the differences in actually living with a person with an “intellectual disability” vs. what I thought (feared) originally.  In my life prior to Violette, I think I thought of ID as something of a tragedy, both for the person who had it and the people who live with that person.  Now it seems like a small part of the person that is Violette, and I don’t find those weaknesses any more tragic than those of my other children (or my husband or me.)  She has likes, dislikes, gets mad, is happy, is loving, just like the rest of us.  Living with Violette has helped me grow, and expanded what I value.  I live with 4 other people who have a wide range of gifts and weaknesses (and I certainly have my own share of both.)  The differences I see within my family have stretched me. I think a lot about words, and how we use them, and how we see ourselves. I’ve thought a lot about communication, and that you don’t have to speak well to communicate well. I’ve learned that my children don’t have to have a life like mine to be happy.

Favorite Therapy Trick/Tool:  
I asked Jawanda Mast, Mom of Rachel in this wonderful video - https://www.youtube.com/watch?feature=player_embedded&v=5M--xOyGUX4), what her secret was to having Rachel be so amazing (and Rachel is very awesome!)  Was it a therapy? A supplement? What was it?  Her answer was “Inclusion, Inclusion, inclusion.  We take her with us everywhere; she does everything we do.  She’s been in a typical classroom.”  That’s pretty much what we have done as well.  I also think that this article is the best one I’ve read on the things that can really cause issues with individuals with Ds. It says it is about behavior, but it is really about much more than that. It is dense with information, but has probably guided me as much in Violette’s early years and learning as anything I have seen (and I’m a research geek, so that is saying a lot!): http://www.down-syndrome.org/reviews/2076/

Random question: What’s your favorite College memory?  
I had a great time in college, but I have to say being at The Snook hotel in Sanibel over Spring Break when I was in college with my BFF’s Anne, Alex, Becki, Shelly and Tracey was probably the best. We drove Shelly’s mom’s van down, stayed with 6 of us in a room built for 4.  Didn’t count on a tile floor to sleep on at night, lol, so we ended up splitting time on the van floor.  Probably the only time in my life I was tan.  All we did was laugh for a week. Also we had to stay awake coming home overnight, so I forced the other 5 to learn our college fight song and toast.  They are always very thankful for that night every time we have a reunion and our group is the only one who knows those songs, lol!

If you feel like it’s not too personal, can you share your diagnosis story?
Check out Missy's diagnosis story at the link below.  

Thank you, Missy for being such an strong leader and for all you do for the Eastside Mom's group! Missy is also a co-leader/moderator for the babycenter.com Down Syndrome Pregnancy Board (click HERE for the link) as well as the creator of the Down 21 Moms (Lose It!) Weight loss Facebook Page for Moms of kids with Down Syndrome.  She is a rock and a great wealth of information (and pretty freakin' fun, too!)

Missy with two of her three daughters: Lilianne (top) and Violette (bottom)