THE Moment: Oct. is Down Syndrome Awareness Month

October is Down syndrome awareness month. Many people are blogging daily this month and I applaud their efforts! I, however, am not in that place (time-wise) where I can do that. Additionally, I have sorely ignored my Blog for a few months now. But I do have something to offer about Down syndrome awareness.

There are so many things that I could address here, but I'm going to choose just one: THE moment.

What is that moment? Well, technically there are many of these moments. What I want you to be aware of now is that there is a moment I experience over and over and over again. The moment is surreal and grounded at the same time. The moment is earthly present and heavenly. The moment is fleeting and forever.

The moment is the time when I know, without a doubt, that Wyatt was perfectly and wonderfully made to be my child, just as he is. That moment is where I drink in his perfection and wonderfulness and forget about all the therapy, what the world thinks perfection is, what others say about his possible future and all the other negative things people can say. And, in that moment, in these many recurring moments, all is right with the world.

This moment happens almost daily. It often occurs when I'm putting Wyatt to bed and I give him one last hug and kiss before bed. It is the moment where I embrace him with all that I have and he embraces me, putting his sweet, chubby cheek right next to mine. He smells of a fresh bath and clean jammies. His room illuminated by the stars on the ceiling from his dream light. The hum of his fan quietly expelling a soothing hum. Then, I tell him how much I love him and I know, like I have never known anything before, that he was meant to be ours. I know that I don't care about anything else right now other than being right there. I know that the connection and relationship we have is greater than anything I ever could have imagined. I know that I love him perfectly and wonderfully, just as God loves me. I know everything is just fine and I'm doing it all right. That moment is pure perfection, pure joy, pure peace.

I want you to know about this moment because we are not all that different from you. We love our children. We are grateful for them. We have those perfect moments. There is another Blog out there that touts something like "we are not sad or depressed or..." And you know what? Neither are we. Yes, we have our daily struggles. But we are just thankful, and grateful, and happy to have Wyatt as a part of our family. I am happy that I get to experience perfection and love through my absolutely amazing and perfectly made Wyatt.

What's more perfect that a boy and his truck?

Gross Motor for a Two-Year-Old BOY!

Wyatt is turning out to be a boy.

Shocking, I know since he is, in fact a...BOY.

But for this Mom who had a girl first, it is a new territory.

About a year ago, my sister gave me a stern, tongue-in-cheek warning: boys are different than girls. I thought to myself "yeah, right, they can't be that different."

And, admittedly, I also had the thought rolling around in my head that, because of Wyatt having Down syndrome, that "boy" side would not be all that pronounced. My sister, just like me, had a girl first, then a boy (and subsequently another amazing little girl, Piper who is almost 9 months old now. We call her Sweet P, and boy do I adore her!!).

I should have silenced the voices in my head and listened to my sister. He is soooooo boy.

There are certain things that you realize you never have said before to your child when you have a boy after having a girl. Things like...

"Stop scratching your behind."
"Don't put your hands down your pants."
"Please stop throwing [the remote, the baby doll, the toothbrush, your food, the car...]"
"Stop ramming the truck into the wall, chair, your sister..."
"It's not polite to play with your..."

So what does this have to do with gross motor for a boy with Down syndrome?

I realized one day when I was playing at the park with my kids that Wyatt is becoming a"typical" boy and he loves to MOVE! Just like so many other boys!

I was kind of avoiding the playgrounds because I thought that, since Wyatt was not walking like a "typical" two-year-old, the playground would be too much for him. Oh how wrong I was! I really regret not talking him and letting him loose sooner!

He absolutely loves the playground and park. He was using the spokes on the handrails to walk himself up and down inclines (awesome PT). He was letting go and walking himself to and from different steering wheels and other moving parts of the playground. He was sliding (and signing) down the slides (head first and loving it)! He was climbing up a five foot rock wall - getting to the top, face beaming with pride! He rode a pink pig (holding on and rocking - which I wasn't sure he could do), played and swung like a champ (which he has been doing for a while.)

Who doesn't love riding a retro Pink Pig?

Look at me! I'm suck a big boy!

Eden and Wyatt swinging - perfect happiness at it's finest.

[TIP: Put your child side ways in the infant swing and swing them. This can stimulate the ear follicles and encourage body awareness and balance.]

I realized again that I should not limit my son. A consistent lesson over these two and a half years. He is capable of so many things! Some days I am protective, but I know that protecting him will only limit him.

The other day at the playground, he was with Josh and fell on the steps. He scraped part of his eyeborw and eyelid. He fussed for a minute and went right back to playing, like it was nothing. Whatta boy!

I write this to remind others that we should continue to include our children in everyday activities. Sometimes we forget that (even this Special Ed teacher). My advice? Go for it! Let them rule the playground and be a boy...or a girl! You'll get a great gross motor PT session out of it and you may just realize your child can do more than you thought.

I'll keep visiting the playground. But, in the meantime, I'll be picking up every toy we have from Wyatt throwing it, watching him play with his trucks and repeatedly telling him to take his hands out of his pants. : )

Just a boy and his truck

Breaks are Good (Update with photos!)

Wow, I haven't written in over a month!

Shocking that I haven't had so much on my mind that life required a mandatory expression via the written word. Not that there hasn't been a lot going on - quite the contrary. But I think my mind has relaxed a bit since I began my first true summer break as a teacher.

And let me tell you: It's AWESOME.

No, really. The word amazeballs comes to mind.

I'm not trying to gloat...really...it's just that I was completely exhausted at the end of the school year. I have really missed my kids. I REALLY missed sleep. And I very much missed summer fun. I've been sleeping about 8 or so hours a night, which for me is completely unheard of. I am feeling so much better. I had a crazy three years of Grad school, Wyatt's birth and the death of my father. This past year was spent getting into my new job, and honeslty processing everything that had happened. I gained about 20 pounds in the process. I have finally given myself permisson to STOP and enjoy each and every day and start to focus on a more healthy lifestyle again.

In June, first Wyatt had his second set of ear tubes 'installed' and he did great!

Wyatt (with Daddy) getting ready for surgery

Then, we went on vacation to Tampa to visit my incredible sister-in-law and her husband (whom I call my brother-out-law!), we went to the beach and to Disney for a day, just with Eden (an awesome last-minute opportunity, but Wyatt stayed back with Uncle Keith) and saw other family along the way.

Epcot - Just before Fireworks!

I am now spending my days toggling between hitting the pool, visiting the zoo, catching up on laundry and the house, and having relaxation days where we watch multiple movies in a day and never change out of our PJs. We eat blueberry waffles and bacon, then go visit my mother to raid her fresh vegetable garden. Oh, and I sneak in making some killer cupcakes! (OK, so bacon and cupcakes aren't healthy, but hey, old habits...)

Ahhhh....Poolside!

Riding the Train and the Cincinnati Zoo

Summer Chairs

THE cupcakes!

I have tried very, very hard to shut off my mind this last month and really focus on resting and doing purposeful things with my kids. (Well, that and I watched the first three seasons of Game of Thrones...) I wanted to stop and smell the proverbial roses. And I think I'm doing a pretty good job. We are busy, but we are mostly busy having fun.

A very hot Fourth of July, but it was a great evening with my little Family!

I have even stopped worrying so much about Wyatt walking.

And on that note...the boy is taking about 10 steps independently! He has stood himself up in the middle of the room a number of times and we are well on our way. Many times I see other kids with Ds his age who are totally mobile, but I try and just focus on what Wyatt is doing and not what other kids are doing. He is my love, my sunshine, my Dr. Destructo, my stinker (who wants to throw everything). He is bright, funny and doing amazing.

My super handsome little man Wyatt with his favorite dog - my Mom's dog, Mattie!

Eden is also well on her way to being a young lady (testing my patience daily, but really I wouldn't have it any other way). We are working on getting her started in Kindergarten. She is a great helper, when she listens, and a little Mommy already. Love her.

My beautiful Eden

All in all, breaks are good. They restore you, they offer a fresh perspective and they allow you to slow down and just simply...live.

I am very thankful that I am able to have this break. Not that things are perfect. We still have stress and things to worry about, and my house still needs LOTS of work...but this break was SO needed. Worries will still be there, but time with my kids at this age is fleeting. I feel like I am resting, enjoying my family, and taking a break to jump back in and give my all at work in August.

But right now, I'm giving my all to fun and rest.

Whether it's three days, three weeks or three months. I hope you take time to rest, enjoy life and have lots and lots of fun!

Therapy Ebs and Flows

Recently, Wyatt's Physical Therapist told me that she thinks he will be discharged from PT by the end of the summer.

This was exciting news for me. For one, discharge essentially means that his delays are no longer significant enough to require therapy. Our biggest focus has been getting Wyatt to walk. He sees PT at Cincinnati Children's Hospital Medical Center - CCHMC - (through the Thomas Center for Down Syndrome) right now every other week, and recently we have added PT from our Early Intervention Services (provided by the State and Hamilton County, which are "free" to us) every other week on the off weeks from CCHMC.

Let me back track for a moment.

Wyatt did not sit until he was almost a year. At seven months, he was starting to try and sit, then we passed eight months, then nine, ten, then eleven...and no independent sitting. He was thisclose to doing it for months, yet it just wasn't happening. He finally sat, completely independent, right around his first birthday. We rejoiced!

The physical part of his development wasn't as provocative as his social development (he really is a social genius).  However, his physical development has been fast and slow at the same time. Seeing fast growth in a months time, then waiting for weeks, or months for another notable milestone. We started to see ebs and flows from an early age. The ebs are when we see significant gains in one area in a certain amount of time. the flows are when we just wait. The progress is noted for a variable amount of time and then, well...nothing sometimes. Like I said, for months in some cases.

Walking has been a similar experience.

Wyatt started 'wanting' to walk at about 14 months. He was pulling up, holding my hands and trying to take steps.  I was thrilled to see these pre-walking skills so early, as I had heard that they sometimes don't emerge in "our" kiddos for quite some time. And to be honest, it was awesome when Wyatt would 'show off' these skills and other parents would 'ooh and ahh' over his early progress. I was excited. But that soon waned.

For those who have experienced a "typical" child, these developmental cues mean walking is within your grasp. You'll see precursors to walking skills and, all of of sudden, one day *poof* they walk. But with Wyatt, those skills eb and flow. They show up one day and then they just plateau. And we never know when, or if, they will re-emerge.

Research and therapists say that a child with developmental challenges (and even without) often only focus on one skill at a time. Where you have a lag, or plateau of progress in one area, sometimes you see a big growth in another. For Wyatt, even-though we have seen slower progress in walking, we have seen absolutely astonishing growth (IMHO) in communication.We have gone from Wyatt only having about 5 signs (ASL signing) in December, to him having around 30+ signs to date. I'm running out of signs I know to teach him. His receptive (what he understands) language is amazing, and his expressive (what he communicates) grows by the day. And his disposition is a dream (we had a therapist ask us 'is he always this good?' To which the answer was yes...he is AWESOME.)

So with all of this, here we sit, at almost 28 months old, and Wyatt is not walking independently. He recently took SEVEN independent steps at an evaluation at Cincinnati Childrens Hospital. That was amazing (and awesome that my Mom got to see it!). But we are still waiting and hoping for that day where he stands up, looks at us and independently walks to us.

I know it will happen. I know I should be patient. I almost hear me talking myself into it. And one day, walking frustrations will be as much of a distant memory as sitting was. But for now, we just wait and take these ebs and flows, of therapy and milestones, one accomplishment and day at a time.

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.

 

----

 

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.

 

Ableism

Do you practice Ableism?

What the heck is that, you might ask? Ableism is discrimination against people who are disabled, according to the dictionary.

A woman (who I only know "virtually") in one of my writing circles recently wrote an article for the New York Times blog, Motherlode, regarding abortion rights for women. Specifically she wrote about the fact that “North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome.” (Citiation and full article HERE)

In the close of the article, she talks about how we should “make it a world [that expectant parents] would like to bring a child into — even a child with an intellectual disability.”

She closed with this because people she had interviewed parents didn't abort necessarily because of the child with a disability, but rather how society deals with individuals who are different. They did not want to raise a child like that in this kind of world. 

A world that often expects everyone to be able.

I do see the author's point about making it a world in which people want to bring children. I wish that I would never worry about people making fun of or judging Wyatt. I wish I didn't worry about people treating him like he is stupid or infantile well into adulthood. 

So, where does the Ableist perspective take us as a society? On a road to nowhere land, IMHO.

First, to be clear: I am not making this an abortion issue. I am making this a human issue.

I believe that the world is full of amazing people. But, some people are not so nice and some have done unexplainablly horrific things - to people with and without disabilities.

But to think that someone is so fearful of how a society will possibly treat a genetically different - disabled - UNBORN child that they end that child's life before it has even begun??

This is a sad, sad thought.

I wish things would change for the better. I wish Ableists were not in existence as much as I wish racism would be extinct.

I know things won't ever be perfect because we are mankind, not God. I know that there will always be people who do bad things (edited on 5/1 from a reader suggestion). But I also know we can do better. Not just for people who are different, but how we simply treat others as humans.

To change this societal norm requires a paradigm shift in societial and cultural expectations. It requires a change in the idealisms of Ableism. To say that people have value simply because they exist...well don't you think that would change the way we view one another?

This is something even the US Government Department of Labor within the Office of Disability Employment Policy is attempting to start doing in employment, as well as Ohio Governor Kasich (love him or hate him) is trying to do through the Ohio Department of Education and the Ohio Employment First Initiative. (Please check out the website and the vision they have HERE!)

But I digress…back to Ableism. The comments section of the article on the NYT blog was horrific at times. People were talking about the human worth of individuals with disabilities not yet born, like it can be quantified through possible unknown outcomes, of which most of us, even "typical" people, have no control over. People were talking about aborting their babies, not because they were fearful of the child, but how they could be cared for by family or society after they - themselves - were gone. Or they discussed the burden it would place on society financially or on remaining siblings. Wow. Some even responded about how it was an atrocity that parents of a child with a disability would take county, state or federal funding to assist with extra costs. (Um, hello...unless you send you kids to your own private homeschool...your kids education has some sort of government funding, even if it is "private.")

Others even insinuated, basically, how we should just magically *POOF* all be perfectly ABLE. And if we are not...well then we shouldn't exist.

YES, SOME PEOPLE REALLY BELIVE THIS AND THEY ARE NOT NAMED HITLER.

The problem is, though, that NONE of us are perfectly able. And statistically, ALL of us will, at one point or another in our lives, will become DIS-Abled. Whether it be illness, age, injury…we will all need the assistance from medical staff, family or friends at some point in our lives.

How many of you have a grandparent or parent who has financially, fully covered all possible medical scenarios from now until death?

I’m guessing I’m hearing crickets.

No?

Or how many of you are going to take in aging parents into your home and care for them until death? Most of us will require some sort of support either through a government program, insurance or Hospice. I don’t think that there are many people ON THIS PLANET that can personally financially cover ever single medical expense from birth until death.

Unless you’re Donald Trump or have a multi-million dollar trust, it is likely that you will need insurance, Medicare or Medicaid, Social Security (if it's still around later), employer-assisted retirement accounts, pensions or some other type of program to help you at some point in your life. 

The point here is that Ableism is not a positive perspective. We cannot count the worth of individuals by their chromosomes or any other facet. The point is that no one knows the worth or value of another human being, or can quantify that through a checklist of accomplishments, abilities and societal contributions. 

I hope that people do not base Wyatt's life value on societal idealisms. I hope they don't do that to me, or to my daughter, Eden, or my husband, or....the list goes on and on. 

There is little progress to be made by engineering the fittest of the fittest. Or the Ableist of the Able. 

So how do we change this? Please find value in all humans. Please realize that you have strengths and weaknesses that others do or do not. Please know that we are all ABLE to do something incredibly well, no matter our challenges. And know that life isn't measured by what you are sometimes ABLE to do, but how you are treating others and how you are being the best person you can be to your own individual ABILITY. 

Above all...I believe we ALL are valued in the eyes of God, equally. And at the end of the day, that is all that really matters. 

Peace, love and joy...

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!

World Down Syndrome Day: Who Am I?

World Down Syndrome Day is tomorrow (3/21). What a difference two years makes! There was a call for posts from the International Down Syndrome Coalition to write about: Who Am I?

Here is my response:

I am not what you think I am at first look.
My size, my eyes, my unintelligible cries;
They confuse you, make you sympathize.
But I’m telling you, I’m not what you think I am at first look.

There is a mystery to you of who I am.
Your outside stares, glares and whispered snares;
That’s not on me, it’s theirs.
But I know there is a mystery to you of who I am.

I am not what you think I am at first look.
My fingers, my toes, my flat-bridged nose;
They bewilder you, make you pose.
Believe me, I am not what you think I am at first look.

There is a judgment from you of who I am.
Paint your little box, stocked with rocks;
Ready to throw out, head cocked.
I feel the judgment from you of who I am.

I am not what you think I am at first look.
My strength, my joy, my place in this world.
Ha Ha! I might just have you foiled.
Maybe you know, I am not what you think I am at first look.

There is a part of me
That you just cannot see
Simply by looking.

For who am I?
I am the strength you wished for,
[The determination that only comes from the heart.]
I am the unbridled joy you wished for,
[The love that only comes from the soul.]

I am more than my boundaries;
I am more than numbers.
I am more.

More than you knew you wished for.

I am not what you think I am at first look.
My size, my eyes, my “mama” cries;
They now fill you; I’m your little prize.
I told you, I’m not what you think I am at first look.

 

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!

The Double Edged Age Question

This post was in edit mode. But then the topic popped up on one of our Mom's groups FB pages, so I thought it was a good time to share.

The other day, I picked up my kids from the sitter as I usually do on Friday's. I was late and rushing. I walked in and my sitter was getting ready to leave. I offered to stay so she could make a friend's birthday party. While I was waiting for another Mom to arrive, I interacted with one of the kids I had not really seen before. He was standing, playing and then I picked him up to put his shoes on.

He was heavy, likely weighing more than Eden, my 4 year old. He was trying to talk and I was attemping to understand him. His mother arrived and we exchanged pleasantries.

Then I asked her...

"When is his birthday?" I said with intrigue.

"August....(something)" she said.

'So will he be 2 or 3?" I questioned.

She looked at me a little odd.

"He will be 2," she said, then continued, "how old is your son?"

I was not sure I wanted to answer.

"He just turned 2 last week," I responded.

The look I received back told a whole story in a matter of seconds: confusion, pity, questioning, empathy...

I was affected. Maybe I read into it too much, but still. This child was obviously leaps and bounds ahead of Wyatt, and that is my reality. I don't see it often because I'm so focused on what Wyatt can do versus what he can't or isn't. I felt slapped in the face with Wyatt's delays.

On top of that, I noticed that she did not ask about Eden. This is a scenario with which I am often faced.

We Mom's like to ask how old other kids are. But with Wyatt, and other kids like him with Down syndrome, it can be a question that is tough. People seem to ask about our cuties, likely with great intent on paying attention to, and offering compliments to our kids with special needs, in an attempt to graciously acknowledge our kids. This is great, but it can also leave us feeling like our "typical" kids are ignored. And it can bring up a whole host of other feelings.

I don't know why this is such a sticking point. Maybe that question is a reminder that our kids are "unique" or maybe it is a reminder that our kids are behind. Especially for me, since most people guess that Wyatt is a full year younger than he actually is. Don't get me wrong...I'm completely guilty of this ageist mis-fire. Once I asked a Mom if her son was 3. He was actually 6. (Open mouth, insert foot.)

I spent much of the ride home that Friday justifying Wyatt's accomplishments, making a mental list off all the things Wyatt could do and the other kid couldn't. I bet that kid can't sign. I bet that kid can't focus in therapy like Wyatt can. I bet that kids doesn't eat like Wyatt or is as well behaved as Wyatt. I bet that kid is...blah, blah, blah...

Once home, we sat down to a quick $5 pizza dinner and I felt compelled to address what it means to be small. A few weeks ago at church, they taught Eden about David and Goliath. I asked Eden if she remembered the story. With prompting, she vaguely recalled the story and I filled in the gaps.

"Eden, you and Wyatt are probably always going to be smaller than others in your class, " I told her. "Mommy was almost always the smallest. But you know what? Being small doesn't mean you are not strong," I told her. 

I don't know why I felt the need to address this directly that day, or why I explained it to Eden. Looking at the reality of Wyatt's delays sometimes hits hard, with me likely over-exaggerating his actual delays. I felt like I not only needed to defend Wyatt's delays and small stature, but I also related it to Eden. My kids are only about 10 pounds apart, with Eden currently weighing about 32 pounds at 4 1/2 years and Wyatt maybe kissing 22 pounds at 2 years.

But after all my soul searching, I justified it: my kids are small. But they are small...and mighty!And who cares what age others think they are!?! They are doing just fine - no matter their size.

The age question can be a double edged sword. Asking can evoke emotion, but ignoring the "normal" Mom question can seem dismissing. But it doesn't have to be that way.

The next time you see a kid with special needs, feel free to oooh and aaaah over their cutness. But also, do us a favor - do the same for our other children...and don't try and guess their age, just ask how old they are. And when we answer you, please respond with something more positive than a confused or sympathetic look. Like maybe try, "oh he is such a big boy! And on top of that, your daughter is beautiful!"

That would be nice, and appreciated.

Here are a few random photos of my Small and Mighties:

Eden and Wyatt watching Backyardigans on the iPad

Sleepy Wyatt and Eden on Daddy's lap for movie night

My beautiful, petite Eden

Wyatt's baptism...let's face it, we are not going to ever have giant kids...

My handsome little man getting his hair cut