May Mom of the Month: Meet Monica!

When I first met Monica, we were at a three part symposium offered by Cincinnati Children's Hospital. Specialists from the Thomas Center for Down Syndrome offered a three part group session on major aspects of therapy for children with Ds. The sessions were all for kids under the age of three for feeding, speech and walking. She was quiet at first, but I noticed her intense focus, even then. 

To be honest, I don't really remember the moment I realized that we would be friends. But I do remember that I had immediate respect for her. Since then, I have gotten to know Monica much better. She is smart, politically astute, has a killer dry (read: awesome) sense of humor. She is a serious force. I think the fact that we both have boys (a minority in our Mom's group from my perspective) is part of our special bond. She is married to a pretty cool cat, Alan, who sits on the DSAGC board (of which I hope to join next year). And Harrison, her son is absolutely adorable!

At one of our last Mom night out's, she made a comment that has really resonated with me. She said something to the effect of "well, you are all now stuck with me for the rest of our lives." 

Monica, my friend, if I had to be stuck with someone...you'd certainly be on my list! I'm proud to call you my friend. You are beautiful, encouraging and witty as hell. 

First Name: 

Monica

Children:

Harrison, 18 months, is our one and only (for now!). He loves bananas, crackers, music, and speed reading books. 

 

Do you work or volunteer?

 

I've just finished my 6th year as a faculty member at Miami in the Political Science department. 

[I like to call her The Professor!]

 

How many years have you been involved with the Eastside and Extraordinary Friends Mom’s group?

About a year.   

 

Why you like being a part of this group?

 

So many reasons: #1 - support. #2 - a place to ask questions. #3 - I like imagining our kids growing up together, living together, getting married, going to school and working together, and generally just being friends for the rest of their lives.

 

Best advice for new parents of a child with T21:

Take one day and one thing at a time. (Advice given to me in the hospital by our pediatrician when Harrison & Alan were in the NICU and I was still at Bethesda North). 

 

Greatest joy in having a child with T21:

#1: The giggles. #2: Seeing him work so hard and achieve every milestone. Sure, you could live in San Diego with perfect weather, but nothing beats a spring day in Minnesota after a long winter. #3: Becoming more open-minded, sensitive, and caring myself. #4: <insert nice thing about husband here - something about supportive, amazing, accepting, true partner. Seriously, I can't find the words>.

 

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?

I've learned how to redefine what "smart" means.  As a (somewhat) snobby intellectual, I've struggled with this the most. But I see an intelligence and joy in my son that is far greater than the smartest PhD I've ever known!

 

[This comment is humorous to me! Monica is about the furthest thing from "snobby" I've ever seen!]

 

Favorite Therapy Trick/Tool:

My favorite therapy tool is persistence and patience. We tried SO hard to get Harrison to sign milk. We did hand-over-hand signing. We made a book of pictures of his bottle and jugs of milk and showed them to him with the sign. The he started signing more. He signed duck, bear, cracker, ball... everything BUT milk. Then one day he started sort-of signing milk but he wasn't doing it consistently. I brought that picture book out and he saw the picture and signed milk like he had been signing it his whole life. Stinker.

 

What is your favorite hobby and why?

I love to work out. It clears my head. It makes a good day better and a bad day bearable. Especially when Harrison was first born, biking was the only thing that helped me escape from the shock of his diagnosis. Reading and watching good movies/TV are other favorites.

 

If you feel like it’s not too personal, can you share your diagnosis story?

(The following is an excerpt from Monica's birth story)

 

After he came out, (around 8:55AM) they put him on me along with a million warm blankets.  He pooped all over me. I got to hold him for a while (not sure how long). They cleaned Harrison up and gave him to Alan. And that's when the doctor (our OB) came in and told us that he thought Harrison had Down Syndrome.  At first I wanted to believe that he might be wrong, but I looked at Alan and we both knew he was right.  I tried to do a little breastfeeding with the doula's help and the nurse said she didn't like his color.  The pediatrician came and looked at him, told us he was 80% sure he had Down Syndrome, and that he was transferring him to the special care unit because he was having trouble breathing.  Alan went with him and I stayed until things got cleaned up and they let me go up there in a wheelchair.  When I got there, we couldn't hold him or touch him.  This was around 11 and we hadn't called anyone yet or even had a moment to ourselves. There was a room next to his where we sat and talked.  We didn't get good cell reception in there, so we finally decided to go down to my room, get lunch, call people and then go back to be with Harrison. 

It always feels like nothing happens in the hospital and then all of a sudden there are tons of people around.  Alan went to go get lunch, the nurse comes in to help me pee and the lactation consultant arrives just as the pediatrician comes in to tell me that he was transferring Harrison to Children's Hospital in 45 minutes.  We went up to sit with him and see him off.  Alan left to be with him and his sister Elisa and Alan's parents arrived to be with me.  They left around dinner time and Alan came back at around 9 PM to spend the night with me.  I was released the next morning (thank goodness I was in such good shape - I had a 100% natural delivery - and was able to be released so quickly) and we headed in to [Cincinnati] Children's Hospital.  

Our prenatal quad test showed 1/2100 chance of him having DS. In retrospect, I was in shock. 

But I want to end on a positive note. Harrison is a beautiful little boy who brings tons of joy into my life. I have been forever changed for the better, I think. Thank you all for being along for this crazy ride.

 

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Thank you, Monica for choosing to be a part of our group. I look forward to growing our friendship for years to come!

 

How adorable is this family?!

Don't think I need a caption here...

True life love!

Yes, this is Michelle Obama holding Harrison (with an elated Monica far right). Cool, no matter your political stance.

 

April [EXTRA]ordinary Mom of the Month: Meet Kathy!

At first, I only knew Kathy virtually. We were aware of each other, but didn't really know each other. When a friend of mine from college had a child going through cancer treatment, I put a Facebook call out to provide meals for their family while they were in treatment at Cincinnati Children's Hospital. Kathy responded with a fervor. Not only did she provide meals for Izzy's family, but she had her kids make cards, and she bought Izzy a birthday gift, and she used her connections to help me give the family over 35 days of meals. What I found was that not only was Kathy smart, but she is selfless, giving, driven and focused in a way that you automatically know you want her as an ally and friend. I look forward to getting to know her more, and I hope you do too!

Children (and tell us a little about each because who doesn’t like talking about their kids?!?!):

We have three kids:  Maddy, who turns 9 in May, Drew, age 6, and Will, who turns 5 in one week. Maddy is a great big sister, very protective and patient (mostly, anyway.) She loves to read, draw and paint, and play outside with friends. Will is very tall and very sweet. He is my hugger. Will loves Legos, cars and trucks, his family and his dog.  Drew is our force of nature, our little bulldozer [T21]. He's in kindergarten now and has had a great year, despite some major health challenges. He has a devilish sense of humor and I love that his speech is now good enough that he gets to be funny in that way, too!

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)?

I have my own media relations company. I started it just after Drew was born, when it became clear that my long, erratic days in the newsroom were over. (I was executive producer at WLWT at the time.) I also volunteer with the DSAGC and St. Rita School for the Deaf, mostly helping with media campaigns.

How many years have you been involved with the Eastside or Extraordinary Friends Mom’s group? Good question! I haven't been able to attend nearly as many events as I would have liked. I work days, David works nights and we have three children, which makes it challenging. But I do remember taking a little Drew to some early playgroup meetings, including one at Missy Skavlem's house. And I've had the pleasure of meeting some of you individually at things.

Why you like being a part of this group?

We all "get it".  This diagnosis does mean certain commonalities for some of us, and it's been such a relief being able to connect with people who've been through things that we're going through, who have great medical advice or therapy referrals, etc. I never feel isolated.

Best advice for new parents of a child with T21:

Get in touch with your local Down Syndrome Association!  My parent mentor (Rosie Abel) was such a huge help in those early weeks after Drew was born, and the DSAGC has been a huge help in so many ways ever since.

Greatest joy in having a child with T21:

Having Drew and feeling a connection to other people with developmental disabilities has really opened up my worldview, and helped me to see the beauty and dignity in so many ways of living and working. I had such a narrow perspective before. He's made me a better person, more patient and loving, because that's what he needs me to be. I feel the weight of that, but am also profoundly grateful for it.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?

That trying to extrapolate every little thing into a glimpse of "what may be" is wasted energy. If you don't do that for your typical children, you probably shouldn't for your kid who has T21, either. And yet I catch myself doing it all the time; comparing Drew's milestones and achievements to those of other kids with this diagnosis, to try to glean how he's doing, if he's still on track, if he's following the same path that high-achieving kids with this diagnosis have followed. But from what I've heard and read, they all follow their own paths, anyway. And it's rarely a perfectly linear progression. Eventually that will make its way into my thick head and I'll stop fretting about it. But I'll never stop expecting Drew to do well. And I pity the fool (said in my best Mr. T voice) who tries to tell me that Drew WON'T go to college.

Favorite Therapy Trick/Tool:

Touch cues!! They really helped Drew develop certain sounds that were so hard for him.  The Kaufman protocol has also been huge for him.  The occasional glass of red wine has been therapeutic for me.

Random question: What's one of the craziest dreams you've ever had? 
When I was a kid, I had the same dream over and over again. A lion was living in my house. Just us, no parents. The lion could only walk on the carpeting, and I could only walk on the tile. Which gave me the bathroom and the kitchen, which was pretty sweet, but he got the bedrooms and the living room (and the TV, which was unfair). The whole dream was us running around and skidding, cartoon-style. I have no idea what it meant, but I do remember dashing through certain rooms during the daytime, just in case.

If you feel like it’s not too personal, can you share your diagnosis story?

We did the nuchal translucency testing when I was pregnant with Drew, and while the translucency itself was perfect, the bloodwork came up with a 1 in 76 chance that he had Down syndrome. We opted not to do an amnio, since we knew that a Ds diagnosis wouldn't change anything for us. But I did have a Level II u/s in my 20th week, and the high-risk OB who read it swore up and down that Drew did NOT have Ds. His measurements were perfect, his nasal bone and heart were fine, etc. But when I was in labor, about to head into the OR (it was a planned C-section), I just knew that my baby had Down syndrome. I am distinctly un-woowoo, so I can't explain the feeling, other than I just knew that he did. I asked a nurse to see if a neonatologist could come in, just to be safe. Sure enough, when Drew was born, they saw some soft markers of Ds. He also had pulmonary hypertension and was having difficulty breathing, so they rushed him off to the NICU. The next few days were a blur, as he struggled with the pulmonary hypertension. Then they told us he had a heart defect, and that they were worried it was a major one. The same morning that the team from cardiology was doing an echocardiogram on Drew, the karyotype results came in. But the neonatologist who delivered the news that Drew had T21 did it on the heels of the cardiologist, who told us that Drew's heart defect was, in fact, minor, and would likely close on its own (it did.) So when the neonatologist delivered the T21 diagnosis in very somber tones, David and I were so happy and relieved about his heart being okay that it didn't feel like a big blow.  The worry and fear came later, of course, and that's where our parent mentor and our wonderful families really helped. 

Thank you, so much Kathy for your spirit of servant-hood and your inspirational family!

What a handsome boy!

What a great looking family!

Sibling fun!

March Mom of the Month: Meet Leesha!

One afternoon, late summer 2011, I believe, I came home and received a phone call from the DSAGC. At this point, Wyatt's diagnosis was settling in and I had started to get fairly involved with the Ds Community in Cincinnati. The DSAGC contact said that there was a new Mom who was having some ups and downs with her new diagnosis, and they thought that I would be a good person for her to connect with. They gave me her number, and we eventually connected. We decided to meet at the Hyde Park Panera with our babies. I walked in and proceeded to meet Leesha and her gorgeous daughter Jaia. We ate and talked, and found lots of things in common, including our inner fears about our children's futures and many joys as well. We have since grown from that first meeting into having a deep and meaningful friendship. Leesha is beautifully honest, funny as heck and is incredibly smart (did I mention she has her Ph.D?). She dresses Princess Jaia in some killer duds, too.

I admire so many things about her, including her strength...and her spunk.

And Jaia is now Wyatt's fiance, until further notice at least ; )

First Name:  Leesha

Children:  

Jarren, age 12, basketball enthusiast and future entertainment lawyer or TV personality; Jaxson, age 5, video game expert, bundle of energy, future superhero; Jaia, age 20 months, princess who is adored by her brothers who serve as her loyal subjects, destroyer of jewelry, diva rockin’ the extra chromosome.

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)?

I am a professor in the Communication department at Cincinnati State College.

How many months/years have you been involved with the Eastside or Extraordinary Friends Mom’s group?   

The groups that I am most involved with are the African American Family Network and the (Extra)Ordinary Friends Playgroup.  I have been a part of the AAFN since Jaia was about 2 months old.  We officially formed (Extra)Ordinary Friends in April 2012. [Leesha named this group, which was the inspiration for starting, and naming, my Blog!!]  I stay involved with some of the other groups and with the DSAGC,  though I would say that those two groups have been my lifelines through this process.

Why you like being a part of this group?  

I love being a part of the (Extra)Ordinary Friends because we are all going through the same stages together.  Our children will grow up together.  I have no doubt that they will form lifelong friendships with each, and I know that I have formed lifelong friendships as well.  The African American Family Network is so important to us because we share a cultural connection.  Our families have children of varying ages so we have mentors that we can connect with for advice and to see what comes next with our children’s development.  I am more politically passionate about the AAFN because of the stark racial disparity of life expectancy for African Americans as compared with Caucasians who have Down syndrome.

Best advice for new parents of a child with T21:  

I will share the best advice that I received.  “It’s always going to hurt, but it won’t always hurt this much”.  Someone told me that when Jaia was very young, and I held onto those words for dear life!  And I have found it to be true.  Does it still hurt sometimes?  Absolutely.  Does it hurt as deeply as it did the first year?  Absolutely not.

Greatest joy in having a child with T21:   

Well of course I love the Ds community and the friends we’ve made.  We have an instant family.  One of my two joys has been watching how accepting my children are of differences.  I always talked to them about being aware and being kind.  But no amount of lectures can replace their experiences of having a sibling with T21 and interacting with people who have T21 or other special needs.  My second greatest joy has been educating others, and educating myself.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?  

It’s okay to be sad.  I think there’s a pressure from the Ds community, unintentional as it may be, that you have to be happy and joyful about Down syndrome to really love your child.  You can love and adore your child and still wish they didn’t have Ds.  There is no time frame to grieving.  I wish we would allow each other the space and opportunity to be authentic about how we are feeling.  I have found the acceptance to do that in the African American Family Network and the (Extra)Ordinary Friends group, and I am always grateful for that.

Favorite Therapy Trick/Tool:   

When we were working on “tummy time” so Jaia could get upper body strength, I would spread the blanket across the pew at church and lay her on it.  She kept trying to lift her head because she heard the music and the preaching.  Instant therapy for 2 hours!

Random question: What did you do during your childhood summers that you loved the most?  

Hmmmm….visit the ice cream truck?  I worked at the Cincinnati Zoo in high school.  It was definitely one of my favorite jobs ever.

If you feel like it’s not too personal, can you share your diagnosis story?  

Let’s just say I didn’t know prenatally, and for me acceptance was a choice, not a foregone conclusion. 

Thank you, Leesha for being an [EXTRA] ordinary inspiration, advocate, and friend!

The beautiful Dr. Leesha!

Princess Jaia at her baptism

Leesha's supper handsome sons

Sweet kisses from Jaia!

February Mom of the Month: Meet Stephanie!

Meet Stephanie!  

Stephanie and I met one evening at a DSAGC sponsored seminar last spring. She was there with her brand new son Eli. I hadn't met too many Moms with boys yet, so my husband, Josh, and I approached her to introduce ourselves. In that moment, I made an immediate friend. She was a fellow Special Ed teacher and also had a daughter the same age as my Eden. She was teaching at the same school where my Dad taught for nearly 30 years. Since then, we continue to find interesting connections on a regular basis and become closer friends. She is just one example of the fact that, without Down syndrome, I would not have found this truly [EXTRA]ordinary friend. She is a member of our [EXTRA]ordinary Friends group (comprised of families with kids who have Ds and were born in 2011).

First Name: Stephanie

Children: Evie - 4 years (spitfire, just like Eden); Eli - 14 months (Ds)

Do you work or volunteer? 

I'm an Intervention Specialist at Colerain High School. (On the northwest side of Cincinnati)

How many years have you been involved with the Extrordinary Friends Mom’s group? 

1 year

Why you like being a part of this group?  

I know it might sound trite, but I've met some really wonderful families through this group and it's very helpful to have other people that just "get it." I've developed close friendships with a few of the Moms and I value that so much. 

Best advice for new parents of a child with T21: 

Don't worry--it's going to be a great life. A hectic, often overwhelming, sometimes scary life. But a really great one if you let yourself relax enough to enjoy the ride. Don't let Down syndrome define your child--remember it's just a diagnosis. Don't let Down syndrome consume you either, but be an advocate. And remember that more than anything, your new baby needs to be loved, just like any other baby. 

Greatest joy in having a child with T21: 

This is a hard question. I get really emotional just thinking about it. As parents of kids with T21, we're sometimes accused of "Disney-fying" Down syndrome (and our lives with Down syndrome). But so many things in my life have gotten better since my son was born. I've deepened my faith and spirituality--that sustained me during his time in the NICU when he was dealing with a life-threatening condition. I've forged meaningful and cherished relationships with new friends. I've evaluated my priorities and made more time for my family and focused less intensely on my career (which I'm sorry to say I didn't do when my daughter was born). And most importantly, Eli is pure joy. He is light and life and love. He has taught me there are no small accomplishments; he has taught me to celebrate little moments and to believe in big miracles. I can't imagine my life without him. 

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends? 

I look back on Eli's time in the NICU, at the level of medical care he required at home, and at all of his surgeries, and sometimes I still can't believe that was our life. I never thought I could get through something like that. But I did. We did. And we're ok. I don't think I'm stronger than other parents, but I do think I'm resilient. Some of the things we went through in his early months--well, I didn't know I had it in me. I use that experience to put things in perspective now, to remind myself when things seem tough, that we've already been to hell and back and it turned out just fine.

Favorite Therapy Trick/Tool: 

Incorporate it into your everyday life--it doesn't have to be a structured activity.

Random question:  

What is your favorite vacation spot and why? 

Anywhere I can slow down and savor time. I love the beach and I love the mountains. Disney is one of my favorites too.

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Also, read Stephanie's diagnosis story HERE, on her blog, Pacify Me. (Another commonality that we share...we Blog and have a love for expressing ourselves through the written word!)

We are so grateful to have Stephanie, her husband John and her gorgeous kids in our lives!

Stephanie and Eli

Eli: could he be any cuter?!?!

Big sister Evie and little brother Eli

Stephanie and John at their wedding. So sweet!

 

 

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

Children

Vivianne is my 13 year old.  She is in 7^th 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 2^nd 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.  

http://yomammamamma.blogspot.com/2010/01/little-history-of-my-pregnancy-with.html

[FROM ME]
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)

Meet Tika

I have met so many [EXTRA]ordinary Friends over the past 20 moths! (Hard to believe Wyatt is that old now!) I want you all to meet them, too! So I'm going to feature an [EXTRA]ordinary Mom each month (or at least try!

First up is one of our fearless leaders of the Cincinnati Eastside Mom's group, Tika. I sent her a list of questions and here is her story:

First Name: Tika

Children: Leightyn (3) (Ds) and Bayli (9 months)

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)? 

I work from home (or the pool, zoo, aquarium, or wherever else me and the kids might be) doing the filing, paperwork, and answering the phones for our online business. I also serve on the Board of Directors at the DSAGC and head the Eastside Playgroup.

How many years have you been involved with the Eastside or Extrordinary Friends Mom’s group? 

I begged Martha (our Early Matters Coordinator for the DSAGC) to start the Eastside group after moving here from Columbus in 2009. We had a Mom’s dinner group there and a small group that met once a month with speakers and socials for the families. We did not have any other family or friends here locally so this is something I really wanted for us. Melissa Skavlem and I started the group in 2010 and our first meeting was in Feb. of that year! Over two years later and we are still going strong. This group is my baby and I could not be prouder of what it has grown to be.

Why you like being a part of this group? 

All of the best information I have ever been given about Down syndrome has come from other families! Now that we are almost 4 years (hard to believe my baby will be 4!!) into this journey I love being able to share what I have learned with the families who have just started their journey. Like I mentioned we do not have family in town and this group has become my family. We have made many life long friends by being a part of this group.

Best advice for new parents of a child with T21: 

BREATHE!!!! The most important thing you can do for your new baby is love them, everything else will come in time. The future can be scary even in the best of circumstances but especially when you have a baby with special needs. Just focus on today and live in this moment! You will soon see that you are stronger than you ever knew you could be. Your child will teach you so much more than you can ever teach them so just hang on and enjoy the ride; the ups, the downs, and all the in betweens!

Greatest joy in having a child with T21: 

The amazing connection that you have with other families who have a child with Ds. There is something about that extra chromosome that allows us to make an instant connection and fosters the beginning of lifelong friendships. Leightyn is the light of my life and has taught me to celebrate every accomplishment and to live in the moment! If the world could only see things through Leightyn’s eyes it would be a much better place. She greets EVERYONE with a smile, wave, and usually a hug too! Her hugs are the best thing in this entire world!!!

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?

It is easy to feel like you are not doing enough for your child. With all of the doctors, appointments, therapy, etc. we can all get overwhelmed at times. What your child needs most is your love and if you are giving them that then they will be just fine. Your child will reach their milestones when they are good and ready and not a second sooner so try not to put pressure on them or yourselves. That sweet moment will come in time so sit back and wait (I know easier said then done) and be ready to clap, scream, hug, kiss, and even cry when the moment comes!

Favorite Therapy Trick/Tool: 

The best tip I have when it comes the therapy is to make it fun and try to incorporate it into your everyday routine. I am NOT saying make a point to have therapy every day, that would get exhausting, but remember that things you already do can be therapy too J For example we had a picnic lunch it the fort yesterday. Climbing the stairs to get in was physical therapy. Signing and saying the colors of the different items we were eating was speech therapy. Using her utensils to cut things up and eat, drinking from a straw, and then cleaning up and putting things back into our bag was occupational therapy. All three therapies in one thirty minute lunch! Use your child’s interests to make therapy personalized and more fun for them. If they like Mickey Mouse use that as a tool. It can be a reward or a motivator.

Random question: 

If you could see 24 hours into the future what would you do with this ability? I would make sure that I actually shower, wear something other than sweats, and put on a little makeup when I knew I would be seeing someone I know while out running errands LOL! Knowing what numbers to play in the loto would be nice too. Money cant buy happiness but it can buy clothes, shoes, and hair bows which can get expensive when you have two little girls J

Tell Me About Your Diagnosis:

We chose not to do any prenatal testing. All of my ultrasounds and routine screenings never indicated that anything was a concern with our baby. I had an easy pregnancy and labor. When Leightyn was born she was not breathing and the room quickly filled up with hospital staff as they began to work on her. I heard one of the nurses ask another doctor, “Are you thinking what I am thinking?” to which they replied “Yes.” All I could think was that they thought my baby was going to die or that she was already dead. Down syndrome was not even a thought. After what seemed like eternity, although really only minutes, she was crying and breathing on her own. The nurse came over to me and told me that they thought our baby might have Down syndrome based on some of the physical characteristics they were seeing. When they handed her to me, I knew she did, although that would not be confirmed for several days. I fell in love with her and instantly felt the need to protect her. This momma bear was born that day as well. She spent her first few hours in the room with me but it soon became apparent that her heart might be a concern and she was taken to the NICU. An echo two days later confirmed their suspicions and made a Down syndrome diagnosis more likely. She had a complete unbalanced AVSD. At five days old she went into heart failure and was transferred from her birth hospital to Nationwide Childrens Hospital where she spent another week. Sometime during that stay her diagnosis was confirmed but we already “knew” although up to that time there was still a small sliver of hope that we were all wrong.

The Down syndrome diagnosis came as a shock but it was not nearly as scary as the heart defect was for me. I always say that her AVSD was a blessing in disguise when it came to the acceptance of having a child with Down syndrome. Suddenly Ds was not that scary at all and instead something we could manage. The heart defect could actually kill my baby and it almost did Down syndrome could not. It really helped me put things into perspective. Down syndrome was a part of Leightyn but it was not all of her, she was my beautiful new baby girl, and I loved her to pieces!

When I was 13 my youngest sister was born at 26 weeks but measured only 24 weeks gestation. She weighed only 1 pound and 8 ounces at birth and spent several months in the NICU. I think this was also key in me adjusting so quickly to Down syndrome. I had been in the NICU before and had seen all of the monitors, tubes, chords, etc. I also knew about Help Me Grow and therapy. I had seen my little sister have many ups and downs in her first year health wise and yet she had grown into a mostly healthy and happy child. Another reason I was able to adjust to our new normal quickly.

It also helped that Leightyn was my first born so I did not have another child to compare her to. She met her milestones on her timeline and it really wasn’t too obvious to me when she was behind as a baby. She did things when she was ready and in her own way and I didn’t know any different! The extra “work” (therapy, check ups, weekly appointments, surgery) was our normal.

This is not to say that it wasn’t hard at times, it was. I cried, I worried, and I was afraid of the future.  I certainly never thought I would have a child with Down syndrome at 24, but I also never expected to have two beautiful redheaded baby girls with light colored eyes either but I did! There are still times when I cry, worry, and fear for the future, but that is what I have all of my amazing friends and family for, to support me on those days. Down syndrome is a part of our lives and we have chosen to embrace it. Today there is so much more joy and love than there is pain and fear. Everyone has a different journey and that is okay. This is a glimpse into mine! 

From me:

Tika is amazing and I'm so glad to call her my friend. Surely a wonderful example for us all!

 Here is Tika with her beautiful girls!