Category Archives: Life

A love/hate ode to Rubinstein-Taybi Syndrome

This month, The Mighty is asking bloggers to write a letter to their child’s diagnosis. Here is our love/hate ode to Rubinstein-Taybi Syndrome a la 10 Things I Hate About You (I might have read too many Buzzfeed nostalgia pieces recently).

 

To my child’s rare diagnosis:

I hate that no one’s ever heard of you, and that you’ll always be around.

I hate the way that blue tag in my car hangs down.

I hate the way you make others stare.

I hate when my child hurts and I can’t read his mind.

Braxton and Dad

I hate that so much it makes me sick, it even makes me rhyme.

I hate the ways he’ll always be delayed,

I hate it when you make me cry.

I hate that you stole my child’s voice, even worse that I have to fight to get him a device.

I hate it when his basic needs aren’t met, and the fact that my answer to all developmental questions is “not yet.”

Mostly, I hate the way I don’t hate you,

Not even close…

Not even a little bit…

Not even at all.

 

You see, you’ve made me change my perspective, and

I see that there is so much life to be lived.

Braxton at the beach

That smile we’ve come to love is one of your many hallmark traits,

And that infectious laugh warms the heart and soul of all acquaintances he makes.

I appreciate the way you make me take a closer look

And celebrate the inchstones not found in any baby book.

We say that you don’t define him, but the him we know and love?

Well, without you that him he would not have become.

We’ve made peace with your existence and we know this path will be met with resistance.

Armed with faith, hope, and love this, too, we shall overcome.

They told us not to expect much, but they didn’t know his spirit.

The nevers became maybes, the maybes became soon, the soon became now and now we know he has no limit.

We have the courage to dream again without fear of the unknown,

Because now we have a community of support, and my how it has grown!

The people in our life we might not otherwise have known, had we not started on this journey feeling so alone.

Every challenge faced has made us stronger and now it’s more clear than ever, a hold you have on us no longer.

Braxton and Mom

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You Shouldn’t Wait for it to Offend You Before You Take a Stand

Today is the official day of awareness for the Spread the Word to End the Word campaign.

Per usual, I have been reading posts from various bloggers who I often read, and today a particular post struck a nerve with me – not in a bad way. The author wrote You’re not offended until it affects you as a response to someone who simply does not understand why the word “retard” can cause one to get so “worked up.”

I paused for a moment and let out a not-so-silent Amen! to myself. And then, I paused once more as I thought about my experience and how true that was for me personally. Which then led to me to think, “Wow, it’s such a shame that it took disability directly impacting my life before I changed my mindset.” Finally, I realized how true this is for MOST people.

So many people vehemently defend their “right” to say the r-word by citing their right to free speech among other erroneous excuses (see the article linked above), but what all those excuses boil down to is the fact that they likely have zero experience with people who have intellectual disabilities so they don’t understand the “big deal”.

They don’t know what it’s like to see a loved one struggle with the most basic of tasks, to wonder if their child will ever speak, to wonder if their child will ever walk without a limp, to wonder if their child will ever walk at all. They don’t know the fear in our hearts when we send our child to school for the first time and HOPE that he will be accepted by his peers. Will they tease him because he doesn’t walk fast enough? Or because her speech is slow and difficult to understand? Will they point and laugh because he rides the “short bus”? Will they simply call her a “retard” and walk away?

If these thoughts have never crossed your mind, you’ve probably never second-guessed your “right” to say the r-word either, but that still doesn’t make it okay for you to use the word. When we (parents of children with disabilities) correct you or bring it to your attention, it’s not to embarrass you or chastise you – it’s to educate you because we know you might not have had a clue how that word affects us and our children. We know because we’ve been you.

So many of us grew up using the r-word and never gave it a second thought. But then we grew up and had a child with a disability and “retarded” became part of our child’s diagnosis.  Suddenly, the word lost all of it’s hilarity. I was ashamed and embarrassed that I ever used that word so frivolously. Suddenly, the word had real meaning and it did NOT mean stupid, pathetic, loser, less than, ridiculous or any other word the r-word often replaces. With a single word, our dreams changed, our world turned upside down, and our instinct to protect our child from ever hearing the word kicked in. Suddenly, it became a very “big deal” and it was no longer “just a word.”

You’re not offended until it affects you.

Why should disability have to affect any of us at all before we are offended by the r-word?  I love my child unconditionally with no end, but I would not wish any of the struggles we have had on anyone, simply so that they understand the true significance of a word. Don’t wait until it is too late. 1 in 10 Americans are affected by a Rare Disease. 1 in 68 children have been diagnosed with Autism. The prevalence of other disabilities is just as great. Chances are, you DO know someone with a disability. They may not be YOUR child or YOUR family, but they are human and they have feelings and they deserve your respect. The r-word hurts an entire population of people, just as racial epithets do. It does not belong in our vocabulary and should no longer have a place in our culture. Find the compassion in your heart and hear my words. I don’t want you to know the hurt I have before this issue matters to you. Take a stand NOW. If one day, you learn your child has an intellectual disability you will be spared the shame and embarrassment I faced when that word became more than “just a word.”

 

Take the pledge now and Spread the Word to End the Word.

spread-the-word-to-end-the-word-2015

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The Moments When Disability Becomes ‘Real’

So I’m sitting here waiting for a representative from the DARS Division of Blind Services (DBS) to arrive for our scheduled assessment. I received the call a few weeks ago and the representative briefly told me about all of the wonderful services and programs the DBS offers. There were many that I thought would be very beneficial for our family. She performed a quick “screening” to see if we would be eligible for services, but it was a mere formality, “With that CVI diagnosis, you’re sure to qualify.” I was excited to schedule the appointment and couldn’t wait to learn more.

But after I hung up the phone, a strange feeling swept over me. On the one hand, I was excited about the additional services, but on the other I realized that my child was now classified as “so disabled” that he qualified for all of these extra services. “With that CVI diagnosis, you’re sure to qualify.”

Not too long before this call, I received a notice that Braxton had reached the top of waiting list for the Deafblind with Multiple Disabilities (DBMD) Medicaid Waiver. If eligible for this waiver, Braxton could qualify for Medicaid on his own without taking in to account his parent’s income, which could disqualify him from receiving services. Again, excitement for the new services and opportunities, but sadness because of the “classification.”

BraxtonWhen I look at Braxton, I don’t see “disabled.” And I’m sure it is the same for nearly all other parents of children with special needs.

I see a tenacious young boy learning to exercise his independence and autonomy. A little boy who defies me when I tell him not to chew on his sister’s shoe by clamping down tighter or throwing the shoe across the room. Or even more developmentally appropriate, when he refuses to put it down until I walk up to him and he sets it down and tries to act like he never had it in the first place.

I see wide eyes and a bright smile that fill my heart with so much joy I could burst.

I see a wobbly walking toddler through tears of joy because ‘they’ told me he might not ever walk.

I see a child full of love who walks as fast as he can just to get a hug. Little hands that pull me back and squeeze ever so tightly because you can’t just get one hug.

I see wonderful every time I look at him, but every once in a while, that ugly feeling washes over me when his disability becomes real and unavoidable due to our circumstances.

When I watch him wobble across the room while a friend’s 2-year-old is running around, jumping on furniture, “are you SURE you want a ‘normal’ 3-year-old?” runs through my head.

When I finally gave in and asked our pediatrician to fill out the forms for a handicap placard; And not the temporary red one, the permanent blue one.

All the way back to the NICU when the doctor told us he would need a feeding tube and he might not ever eat on his own. Agreeing to the tube meant he was going to be different for the rest of his life. The tube meant he would not ever be ‘normal.’ What would people say? Would he ever be able to do things like a ‘regular’ kid?

Answering developmental questionnaires and marking “no” for all the things he can’t do.

When sitting in his first school ARD and there was no “fight” for services, because there was no denying that he needed them. Only, I didn’t recognize there was no fight until my ‘typical’ daughter needed help and it didn’t go near as smoothly because her disability didn’t affect her enough.

The day I finally parked in a handicap accessible space only to fear that someone would question me and therefore make me tell them, show them, “Look, look how disabled he is! The placard is for him.”

Perhaps it’s not that his disability is any more real in these moments than it is at any given time, but more so the fact that I have to accept it and recognize the ways in which it permeates our lives that hurts me so.

In three years, I feel like we have all come so far and we are in a good place, a place of acceptance and adjusted to what is ‘normal’ for us, so when these feelings intrude, it always surprises me. But, I recognize that grief is cyclical in nature. We are constantly moving through the stages of grief, sometimes staying in one stage for very long periods of times, which lulls us into a false sense of security until something jolts us back in to active grief.

I also realize that we are still very early in our journey and this feeling is only going to continue as the years pass. With every birthday, every milestone, every IEP Meeting, as I watch him walk next to his peers, as I dream about hearing his voice and awake only to find that he still has no words for me.

But then, there is that smile; the smile that brings me up from the depths of my sadness and self-pity.

That sweet, charismatic, wonderful smile as he turns his head like a bird to make sure I’m looking right in his eyes as I lay in bed and then he comes in for a hug and lays his head so sweetly on my shoulder and squeezes me tight. It is in those moments that the labels and services and countless appointments no longer matter. When wonderful returns and if only for a moment, disability disappears.

 

And with that there is a knock at the door. I squeeze my boy one more time and take a deep breath.

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We Are So Thankful

The season of thanks is upon us once again and we have so much to be thankful for this year. Along the journey, we have learned to be thankful for everyday and grateful for all of the little moments throughout the year. As we reflect upon the last year, one thing stands out most; progress. We are so thankful for progress. Braxton has accomplished so much in a year and what once was very slow progress, is now exploding in so many ways.

This time last year, Braxton took his first unassisted steps and at most walked about 10 steps on his own. He was eating 2-4 ounces per day. He had no words and minimal sounds. Though progress was slow, there was, in fact, progress. Braxton can now walk unassisted, albeit a bit wobbly, an entire city block.

He’s on his feet more than he crawls around. He eats nearly 16 ounces every meal and you’d never guess there was ever a time he couldn’t or didn’t want to eat. He still has no words, but he is so much more vocal these days. Thanks to technology, he now has a voice through the Augmentative and Alternative Communication (AAC) app, Speak For Yourself on the iPad. He’s learning everyday how to use the app to communicate with us.

Braxton pointing and telling me he wants to eat on SFY.

Braxton pointing and telling me he wants to eat on SFY.

His dexterity, focus, and fine motor skills are still slow to come, but he is so much farther along this year.

Braxton learning to string beads

Braxton learning to string beads

These are huge accomplishments for Braxton, but there are also so many little things we are thankful for this year.

 

 

We’re thankful for the coos and babbles that wake us before the sun, because it means we’ve been granted another day.

We’re thankful for the extra minutes of rest we can steal when Braxton will snuggle in bed with us.

We’re thankful for the sweet smile and not-so-gentle pat on the back that says, “Wake up, guys!”

We’re thankful for the sweet way Braxton pulls you close for a hug and rests his head on your shoulder.

We’re thankful for the way Braxton pulls our arm back around him when the hug wasn’t quite long enough.

We’re thankful for the look Braxton gives when he recognizes you and the way his eyes light up and his beautiful smile crosses his face.

We’re thankful for the way his whole body tenses up and he shakes with excitement, or kicks his little legs.

Big Smiles

We’re thankful for silent way Braxton says “I love you.”

We’re thankful for the incredible sibling bond he shares with his amazing big sister.

A sibling love that cannot be broken.

A sibling love that cannot be broken.

We’re thankful for the messes Braxton makes, because it means he’s mobile and independent.

We’re thankful for the countless hours of therapy that have helped Braxton along the way.

We’re thankful that we are down to seeing our specialists once a year.

We’re thankful for Braxton’s good health as of late.

We’re thankful for the sweet moments in parenting that melt away bad days and tell us we must be doing an alright job.

Sleeping

We’re thankful for therapists who have been in our home since Braxton was 8 weeks old. Their tireless work with Braxton goes far beyond therapy. They love and care for our sweet boy and share in our pride when Braxton reaches a goal. Braxton is not just a patient or a paycheck to them. We have been extremely blessed.

We’re thankful for wonderful teachers who have joined our team this year and have already fallen in love with Braxton. They have such a love for all of their students and we’ve seen such progress since Braxton started with them in August.

Braxton walking with his teachers

Braxton walking with his teachers

We’re thankful for the tantrums Braxton throws when he gets told “no” or has a toy taken away, because it shows he has the cognitive ability to understand and a way to communicate when something is unpleasant. It’s also a “normal” toddler reaction, so it’s a nice reminder that not everything in our life is atypical.

Braxton Upset

 

We’re thankful for the times Braxton gets himself in trouble by opening the oven door, swinging the lid on the trashcan, opening the cabinets and banging pots and pans, or unraveling an entire roll of toilet paper, because do you know what cognitive and motor skills it takes to do any of these things!? Although it can be frustrating and we get upset with Braxton, inside we are elated because this shows so much progress!

We are thankful for the sweet laughter that fills our home daily.

 

We’re thankful for family that loves and supports us in so many ways.

We’re thankful for friends who care and share in our joys.

We’re thankful for people who read our blog and share our Facebook posts and have fallen in love with a little boy they have never met.

We are thankful every day for so very much in our lives. We remain positive in our journey because positivity has so much more power and love than focusing on the negative. We have bad days, but they don’t last long because we allow positivity to permeate every aspect of our life.

We wish the same for you. Look for opportunities to be thankful. Live every day with gratitude and positivity. Let your thanks extend beyond today and this season. From our family to yours, we wish you a very Happy Thanksgiving.

 

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Dear PPCD Teacher…

It is still hard for me to fathom the reality that Braxton is going to start school on Monday, but whether I like it or not (or am ready or not!) it’s happening.  I have been working this week to update Braxton’s Care Notebook and writing a new letter to his new PPCD (Preschool program for children with disabilities) teacher.  His Care Notebook has his medical history, information about his feeding, how to feed him, how to administer medication if he needs it, and what to do in case his g-tube comes out or other emergency.  I have also prepared a spare G-tube kit with instructions. (I will write another post later with a little more on these).  I’ve tried to prepare as much as possible for Braxton’s teacher and hopefully we haven’t missed anything! As we did last year, I’m going to share Braxton’s letter with you. If you read the previous letter, you will really see just how far Braxton has come in a year. This little boy is truly amazing!!

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Dear PPCD Teacher,

BraxtonThis handsome little boy is our son Braxton (or Brax as we sometimes like to call him). We are so excited to see him take on this next chapter of his journey and look forward to working with you this year! We’d like to give you a little introduction to Braxton as he begins this school year.

Braxton is 3 years old and currently has a diagnosis of Rubinstein-Taybi Syndrome (RTS). Don’t feel bad if you don’t know what this is, because it is pretty rare. Rubinstein-Taybi Syndrome is characterized by distinct facial features such as a beaked nose, almond-shaped eyes, small head and jaw, broad thumbs, and a smile that causes the eyes to slant and almost completely close. Children with RTS also have a variety of medical issues that can affect the heart, brain, and digestive system. Braxton is followed closely by many specialists and is currently medically stable. We just followed up with all of our specialists this summer and they are all pleased with his progress and have no significant concerns. Children with RTS also have significant developmental delays but do attain all gross motor skills. Fine motor and speech will be Braxton’s biggest challenges.

Regardless of his diagnosis, you will quickly see that Braxton is just like most of his 3 year old peers in so many ways. He loves to be on the move and play with his favorite toys. He is determined and will work hard to get his way. His receptive language skills are growing every day and you will begin to see his understanding after a short time. He understands the word “no,” but like most 3 year olds, he is not happy with being told ‘no’. He will pout, whine, cry, and if he’s feeling especially dramatic, he will throw himself backward. This is also how he tells us he does not like something (be it an activity, doesn’t like that we stopped an activity, or took something away from him.) He can easily be redirected to calm him down. If that does not work, you can pick him up and swing him a little bit and he will start to laugh. Occasionally, he will shake his head to mean ‘no’ in response to a question or activity. He does also understand a few short phrases like “It’s time to eat,” “come here,” “time to go bye-bye,” “all done,” and “let’s read a book.”

Right now, Braxton does not say any words. He communicates with us using non-verbal cues, some gestures, and vocalizations. We communicate with him using Total Communication, which includes talking to him, Sign Language, Picture Cards, and Augmentative Communication Programs. He has not picked up any sign language at this time, but he understands the idea of the picture cards and Augmentative Communication Programs. He will accurately choose a toy or an activity on his iPad when given 4 choices about 75% of the time right now. Picture Cards or AAC opportunities should be given during instructional time as often as possible. Some opportunities might include, during circle time to choose the correct day of the week, to choose a song/activity, during center time to choose a center, or outside to choose which apparatus he would like to play on. We will work with the district Assistive Technology teacher, our speech therapist, and you to find a program that will grow with Braxton to use as his voice as the year progresses.

Braxton is currently working very hard to walk independently and is very close to doing so. He will walk very well with us if we are holding his hand, and often he merely holds on by one finger. He is gaining confidence to walk short distances without assistance and this should be encouraged as much as possible. When walking, you must only hold one of his hands. The moment you hold both of Braxton’s hands, his legs magically turn into wet noodles and he crumbles to the ground. It’s really quite amazing. He crawls really well and likes to “walk” in a tall-kneel position. He is currently using a combination of crawling, kneeling, cruising and walking to get around his environment. With a little bit of work, we really believe Braxton will be walking on his own very soon.

Braxton is a very easy-going and happy little boy. He has a bright smile, an infections laugh, and he radiates so much joy. He LOVES music and lights. And he loves to listen to the different sounds things make when they hit the ground, so he will often pick toys up and drop them. His current favorite game is peek-a-boo. He initiates this game often by covering his eyes with his hands. If you say “Where’s Braxton?” he will uncover his eyes and wait for you to say “Peek-a-boo” and then he will give you the biggest smile and a high-five. He also loves windows and doors, so it would be good to not seat him directly next to a window or door because he will want to stand there. He is also very curious, so if he sees an open door, he is very likely to crawl out. Braxton also needs extra sensory input at times and will chew or hit his head to get that input. We redirect his chewing to something that is appropriate like a chewy tube or his pacifier. He will often chew on a plush toy so that he can focus on an activity in front of him. He does not head bang as often as he used to, but if he does, it should be redirected. He loves big movements like swinging, jumping and spinning. He loves being outside and feeling the breeze as he swings back on forth at the park.

Overall, Braxton is pretty easy to care for and is very interested in learning. With a little bit of time, his personality will begin to shine through and he’s sure to steal your heart. If you want to learn more about him, please feel free to ask us or browse his website at braxtonjoseph.com, where we regularly write about our journey and experiences. We strive to keep open communication with all of our teachers and providers, so please do not hesitate to contact us if you have any questions or issues. And please keep us updated on his progress; there is nothing too small! We are so glad to have you on Team Braxton and look forward to an incredible school year! Thank you for taking the time to read about Braxton and for your dedication to the PPCD program.

 

Thank you,

Vanessa and Joseph

 

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