Monthly Archives: May 2013

Whatever It Takes

At the beginning of the year, I really started worrying about communicating with Braxton.  At 18 months he had zero words and really no way of communicating with us.  I decided then that I really wanted us to learn sign language because we weren’t certain if Braxton would always be non-verbal.  I took a class in high school and I did baby sign language with Aileen and watched “Signing Time,” but unfortunately a lot of it didn’t stick with me since we were also speaking and didn’t really NEED to sign.  I began talking to our Auditory (AI) therapist who sees us in home a few times a month.  Then, we met with our early intervention coordinator and ended up increasing our monthly visits with AI so she now comes once a week to meet with us.  She mostly plays with Braxton to help us learn how he is communicating and she signs constantly while they are playing, so we asked her to help us learn.

Not too long after, we learned that one of the other Auditory therapists was planning on teaching a sign language class and it would be open to parents and other educators. [She was also going to be doing this completely VOLUNTARILY! I’m always thrilled when I learn people are so willing to give of themselves for something they are so passionate about regardless of compensation.  I’m so grateful to the woman teaching and the educators going the extra mile to come to class – after all, they are the ones who will be working with Braxton when he goes to school. This is great for a mom to see! It’s scary to think about putting Braxton in public school at 3 years old, but when I see that the people who will be working with him are genuinely invested in the kids, it puts my mind at ease.] Anywho…We started the class in Mid-March and we only have a few classes left now.  I have learned so much and am truly surprised by the amount I have retained.  Now that we know Braxton will most likely NEED sign language, I’m glad my mommy intuition made me want to learn and that we asked for more visits and resources. Aileen is even learning with us! She thinks it’s very cool to learn and is always excited to show off her skills.  Here is a video after our first class of Aileen:

She’s gotten a lot better and actively asks questions and tries to fingerspell which is fantastic! She’s truly the best big sister ever!

Through the class, we are learning Signing Exact English (SEE).  SEE differs from American Sign Language (ASL) in that it is an exact representation of the English language, so there are signs for different tenses and different pre- & suf- fixes.  It was explained to us that SEE is beneficial to a child because when they learn to read and write they will be able to read/write the exact way they have been signing because they have a grasp on grammar and syntax of spoken English.  ASL is a language in and of itself, and it has it’s own rules about grammar and syntax so when it is written out, it doesn’t translate exactly, which can confuse students.

Our hope is that Braxton does learn to have some verbal language, but if he doesn’t, we want him to be able to express himself.  We are also open to him using Alternative and Augmentative Communication (AAC) which is communicating through a technological device.  This can be an iPad or some other “talker” device. There are so many options and apps out there today, so it is no easy choice.  We are working very closely with our Speech Therapist and when Braxton is ready, we will try out different apps and devices to find what works best for him. For now, we are using an iPad with him just so he is familiar with it.  He is getting a lot better at handling it and actually touching the screen with his hand instead of using his head or trying to eat the iPad instead! A few of his therapists even use them with him during their sessions.

We are willing to do whatever it takes to help Braxton be successful.  Sign language, picture cards, Communication devices, anything and everything available.  Braxton is definitely finding ways to communicate with us now, and while he still doesn’t have any words, we are learning his cues. We have learned so much already on this journey, not just about all of Braxton’s medical issues, but also more about ourselves.  We’ve learned how strong we can be and how to be better parents for Braxton.  We look forward to the road ahead – Braxton is going to continue to surprise us all.

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Filed under Kids and Family, Life, Special Needs Child

Full of Gratitude

We are now 2 weeks post-diagnosis.

Most parents will see life as life-before-kids and life-after-kids, and to some extent, we do too. But, for now, we’re definitely seeing life as life-before-diagnosis and life-after-diagnosis.

While nothing has physically changed, our mind state seems to have shifted.  2 weeks ago, our diagnosis was met with trepidation.  We were still uncertain about what the future held for our son, and sure, I still don’t really know, but I’m much more hopeful than I was in life-before-diagnosis.

2 weeks ago, the only people I knew with any relation at all to Rubinstein-Taybi Syndrome (RTS) were the few people who had contacted me via our blog to ask if Braxton had been tested for it.  When we received our diagnosis, I contacted each of them and told them their hunch was right and thanked them for bringing it to my attention.  That day that I wrote about our diagnosis and the new journey that lie ahead, someone commented on the post and told me they passed the blog on to a friend and that friend in turn contacted me and told me she knew several people with RTS.

Just 3 days later, she added me on Facebook and posted a status welcoming us in to the RTS family, and within a few hours I had new messages and friend requests from SEVERAL other people who had children or family members with RTS all willing to reach out and connect with me.  And just like that, I was hooked in to a fantastic support network with people all over the world ready and willing to walk with us on this journey.  Within a few days I have personally added and talked to 42 individuals who have some experience with RTS on one level or another.  I also found a Facebook Group with over 600 members.

I am repeatedly amazed at the advancements technology has made.  10 years ago, I would not have imagined getting “connected” so quickly.  I seriously don’t know how I would have handled this journey without technology.  The ability to reach out to others, write about life, instantly connect with people who share my experiences, is to some degree unfathomable…yet, here we are, and that’s exactly what has happened.

I’ve spent the past couple weeks researching and taking in as much information as I can.  Memorizing the stats and characteristics and probabilities of this, that, and the other, not because I believe those figures completely describe my son, but because I now I have a new responsibility to educate others and create awareness.  Rubinstein-Taybi Syndrome is pretty uncommon and almost none of our physicians know anything about it.  It’s now my job to tell them what I know based on research, and Braxton’s job to teach them the reality.

The reality is that most of the research is outdated.  The prognosis seems so grim from the research available, but I’ve learned from REAL people that the possibilities are endless.  Every child continues to write their own story, and I have no doubt Braxton will do the same.

Individuals with RTS are supposed to be almost completely non-verbal. I’ve spoken to parents who say their kid will talk your ear off.  And parents who say their child doesn’t have many words, but they are excellent with sign language or a communication device. Non-verbal? You’d never know that spending one afternoon with Braxton.  He has been babbling like crazy in the past few weeks.

You’d be surprised to learn that many of the children with RTS have a passion for “typical” activities.  I’ve spoken to parents who have children who are playing baseball, swimming, running, wrestling, cheerleading…things you’d never guess if you just took the research as fact.

One thing I’ve confirmed is that the feeding difficulties usually DO resolve.  Many of the parents I’ve talked to say their child did not need a feeding tube forever.  Most say by 5 or 6 their child was eating very well.  Braxton is making strides toward that goal, and I’m certain he will be a great eater in his own time.

I’ve also learned that Braxton’s lovable social nature will never go away.  I see pictures of 13 year old boys still willingly sitting on mom’s lap, content with mom’s hugs and kisses and my heart smiles knowing that I’ll still be able to hold him close as he grows older.

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Making monkey sounds with mommy is hilarious

I’ve also ‘met’ a woman who is in her 30s and living completely on her own.

Are these things true for all children? Probably not.  Experiences vary greatly, but it’s nice to know it’s not as scary as the research makes it out to be.

Are there still hard times ahead? Absolutely.  The lifelong battles Braxton will have to face aren’t going anywhere.

The good thing is we are already monitoring everything that may present challenges, so we are proactively preparing.  Some days will still be more difficult than others.  Again, not every day is good, but there is something good in every day.  And for the days that aren’t so good, I hold on to hope.  I remind myself of these positive experiences of other families.  I reach out to the new support network I have to find the “seasoned” mom to help me through.  I cannot express enough how truly thankful I am to have such a network in my reach.

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The possibilities are endless, and Braxton intends to prove that.

So, so much gratitude.  My heart is full again.

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Filed under Family, Kids and Family, Life, Special Needs Child