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

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.

----

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!

 

 

Therapy Setbacks and Successes

This week, we experienced a setback in Therapy. It wasn't the first time this has happened. Last year Wyatt was sick for about 2-3 months from December to mid-February. It was frustrating because he regressed in eating and some communication (because of croup, a tummy bug, and recurrent colds). He didn't want to eat many solids and he lost, yes LOST, nearly a pound in a month. At his one year check-up, he weighed a mere 14.5 pounds. The words "failure to thrive" at a group assessment appointment hit me like a Mac truck. Feeding and speech therapy definitely had a set back.

Thankfully, he rebounded and over the last year has gained 6 pounds and grew about 5 inches. He now feeds himself (he pretty much eats what we eat) and he is working on using utensils. He is signing and has a couple of words. He is still tiny, but we are proud of his progress.

This time, Wyatt had a set back in physical therapy. And it's kind of my fault.

Let me back up for a moment. Wyatt is not walking...independently. In October, Wyatt got fitted for, and received Sure Steps (click on the word to see the website) to support his walking. There are two stages of Sure Steps. One is a low ankle support to assist with strength and pronation:

 The other is a higher support, up over the calf, to help with his issues of buckling his knee (he doesn't like to squat). The ankle supports fit into the higher supports for control in both areas:

Fast forward to the past few weeks...We had a decent snow (enough to sled) a few weeks ago, and while taking him sledding for the first time, we had a mishap and his tiny ankle got twisted. We almost made a trip to the ER, but our PT said it wasn't broken, but probably strained. She recommended that we put his braces back on and give him rest.

This means that he has gingerly been using his left foot. He has not wanted to walk like he was before. We are, at this point, back where we were a few months ago. Another setback.

As initially frustrating as this was, I realized that these things happen. Sometimes with our kids it is two steps forward and one step back (literally and figuratively).

So what can we do?

Not all is even close to lost. While the PT portion of our therapy is slightly derailed, we can still focus on other areas. Therapy should not be an all-on assault, but rather a thoughtful execution of the current strengths. Gross or fine motor not moving forward? Focus on another area! In this case, we went back to focusing on speech and signing. And even though PT was at a setback, we saw progress in signing. Wyatt has added "shoes" and "book" to his signing capabilities! We were reading books and modeling signs, with hand-over-hand, guided instruction. And it paid off.

So if you have a stall in one area, be sure to move forward in another. A setback does not mean all is lost. Keep moving forward thoughtfully and you will likely still see growth.