Welcome

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.







Wednesday, August 27, 2014

Return of the Writer: The Pre-School Diaries (To Mom's with Infants with DS)

I realized today that it has been nearly 9 months since I have written. How is that even possible?!?! Life sometimes happens and gets in the way of me carving out time to organize my thoughts via the written word. And that's OK.

But today is special. So I figured it was as good a time as any to revive my Blog.

Why is today special? Because today...today, Wyatt started pre-school.

I heard a news story this morning that said more parents cry on the first day of school than kids. And today, this was 100% accurate! I cried last night packing Wyatt's backpack. I cried looking at all the FB posts of my other [EXTRA]ordinary friends' kids going to school. I cried looking at pictures of my little guy sent to me by my Mom, because I could not take him myself today.

As much as I prepared for this day, the day itself was both uneventful and amazing. From prior IEP and teacher meetings, to the sign language PDFs and the 'All About Wyatt' documents I sent and the multiple phone calls with his teacher...today ended up being just another typical day in the life of a pre-schooler. He was swept up by his teacher, and led into class to start the day.

AND THAT WAS THAT.

We are so fortunate to be in a school that (for the most part) includes kids with disabilities in the general education pre-school/kindergarten class. We participate in a Montessori school that was recommended by been-there-done-that Ds Mamas.

As the day forged on, I realized that this wasn't a culmination of the summer prep that I did, but rather the amazing result of the MAIN GOAL we have been working towards since Wyatt's birth. Whoa! We have worked hard to get him to this day! Some days, I wanted to give up or thought it wasnt worth all the therapy. I'm glad I (mostly) ignored those thoughts!

And so I say to all those Moms out there with new babies or infants who are working their proverbial arses off in therapy to get their kids to school...listen here: IT IS ALL WORTH IT!

There are days, weeks...and maybe even months where you will second guess, doubt and question yourself as to whether or not this or that is working. Question if you are doing too much or too little. Question if you are teaching the "right thing" or if you should just give it all up for a moment.

I'm here to tell you...KEEP GOING because you WILL see the fruits of your labor!

My Wyatt went to school today and worked LIKE A BOSS (thanks, Crossroads Church). I know we will likely have a few hills, and maybe mountains, ahead of us. But today was golden...He was following directions, working hard and standing shoulder-to-shoulder with his peers.

There is a small group of people that worked [EXTRA]ordinarily hard to make this happen (I already called you out on FB) and also a HUGE group of [EXTRA]ordinary friends who have lent support emotionally, strategically and have more than once talked me off my own ledge. I can never repay these people. But I am eternally gratefull for all they have done. Today is a success.

GO GET 'EM WYATT!

Thursday, October 3, 2013

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?


Tuesday, August 6, 2013

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


Friday, July 19, 2013

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!

Saturday, June 8, 2013

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.

Thursday, May 23, 2013

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.
 

Tuesday, April 30, 2013

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...