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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.







Showing posts with label Therapy. Show all posts
Showing posts with label Therapy. Show all posts

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


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.

Monday, February 11, 2013

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.

Tuesday, January 22, 2013

Therathoughts - Start here

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

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

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

Thanks and I hope you find this useful!