Friday, May 17, 2013

Special Needs Spotlight: Ryder






**I have no idea why the fonts are all wacky today.  Sigh.  Carryon.**

Thank you so much for spotlighting our family!  My husband, Patrick, and I have been married for 8 years, and we have 3 very active, smart, and independent little boys.  Our oldest is Ryder, who turns 4 in July.  Our youngest are twins, Harvick and Jarrett, who recently turned 2!

At Ryder’s 18 month well-baby check-up we commented to our doctor we were concerned our son was not talking.  He encouraged us to be patient.  At his 2 year appointment, we knew we should do something – he was saying “bah” for ball, and “buh-oo” for balloon – nothing else.  We were able to connect to Early Intervention through our school district who did a full assessment of Ryder.  His scores were exceedingly high in all areas, except verbal expression (which barely registered on their charts).  After a few months with minimal, if any, progress, we had him evaluated at our state’s top Children’s Hospital.  At 29 months of age Ryder was diagnosed with Childhood Apraxia of Speech (CAS).  This condition boils down to a disconnect between brain and mouth – Ryder lacked the ability to speak.  He is not lazy.  It is not a delay.  It is a motor speech disorder (not neurological) that affects the programming/planning speech movements.  The prognosis for children affected by CAS is good, if treated early and with intensity.  Ryder will likely never “outgrow” CAS, but with intervention the severity will lessen significantly.

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Miggy:  Can you take me back to the day you knew your son was diagnosed with CAS?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Kayleen:  Frustrated with the progress in Early Intervention, I started making phone calls to every resource I could find.  The term “Apraxia of Speech” came into my repertoire a few months before our actual evaluation.  In my heart, I knew this was the problem – but, admitting that he lacked the ability was hard.  Within the first few minutes of the evaluation at Primary Children’s Hospital, she stopped the evaluation to confirm my fear – CAS.  Our feeling as parents was sadness for our child’s struggle.  We are the first to point out that Ryder’s CAS, thankfully, only affects his verbal expression.  We are fortunate to “just” have one aspect to battle.  Regardless of logic, I was sad.

Through much therapy (both in intensity and frequency), we have seen Ryder make immense progress.  With this, we have found hope.  Hope for what our son will be able to accomplish – initially we were told that given the severity of his CAS, he would likely not gain “typical” scores for verbal expression until early Elementary years.  Today, Ryder hits “low average” for his verbal expression – far surpassing the initial prognosis.  We have worked hard to reach this point.  Very hard.  But, every step has been worth it.  We are hopeful for the future.


Miggy:  Explain how Ryder’s specific special need affects your day-to-day life?  

Kayleen:  Ryder has made tremendous progress.  His comprehension and cognition remain at higher than age levels.  He is one tough kid, who has fought hard for his ability to verbally express his feelings.  Ryder received Early Intervention until he “aged out” at age 3 – at which time he was accepted into our school district’s Special Education Preschool – he attends 2 hours/day, 4 days/week.  Additionally, Ryder has received Speech Therapy through our private (and amazing!) SLP.

Our concern now shifts to encompass little brothers – Harvick and Jarrett.  At 2 years old, they still have no words.  They babble (like Ryder did), but have no consistent sounds/words for objects.



We have made the choice to not promote sign language in our home – this decision is multi-faucted. Basically, with CAS, a child find’s the easiest route to communicate – Ryder’s verbal expression progress reverted when taught new signs.  Rather, we encourage a sound (of course, working to get the correct sound) for requests.  We ask a lot of yes/no questions to elicit a response.  It is frustrating for the boys, as they know fully what they want, but are unable to request it.  I can remember Ryder sitting at the dinner table one night, so frustrated with us – with tears running down his cheeks, he gave up.  We let him sit for a few minutes, before trying again.  Our son wanted applesauce – a simple request if you have the words to communicate this.                 
                      
                                                                   
Miggy:  What are the biggest worries you face for Ryder?    

Kayleen:  Ryder has shown so much progress, we are hopeful that Harvick and Jarrett will respond in a similar way to therapy.  Given our knowledge of CAS, we started speech therapy techniques from an even earlier age.  Early Intervention was started sooner, as well as private therapy.

I worry that Ryder will now “freeze up” when placed in uncomfortable/unfamiliar situations, relating to speech.  He has a difficult time when faced with having to repeat a specific sentence (ranging from “I’m sorry” to a memory verse in church).  For the most part, we are surrounded by a community that is supportive, and encourages Ryder.  Ryder has learned to ask for help when he can’t formulate the correct words/sounds, but not everyone understands why he stops mid-sentence to request assistance.


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Kayleen:  We are often approached when we are out shopping – I think it’s a combination of 3 young boys in a cart and/or the twins.  Naturally, people will walk up to us, and direct a question to the boys – asking their age, their name, etc.  Ryder’s response recently has been “my bruh-vers (brothers) don’t have any words – you have to still talk to them, they are wearning (learning)”.  Although slightly embarrassing at times, I can’t help but smile every time – Ryder has the ability to tell people that his brothers “don’t have words” – when first diagnosed, I wondered how long it would take for him to reach this point.

Also, at a recent Awareness Walk, when standing together with all participants, the photographer asked everyone to “say cheese”.  Clearly, something that many photographers do – it just struck me as funny – at an event to promote awareness of CAS, the children affected were asked to say a specific word!


Miggy:  How can people best approach or respond to Ryder? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Kayleen:  It’s remarkable to me just how often strangers approach children with a question.  There is absolutely no way for you to detect that Ryder has CAS visually.   We have no issue with the approach – it’s more the person’s reaction.  When Ryder (or now, Harvick and Jarrett) doesn’t respond, I will often respond for him – I wish more people would accept my answer for the question, rather than pushing my son(s) to answer (because it will just be me who answers you, again).  When in social situations, we are appreciative of people who take the time to ask about Ryder’s speech issues – we are always willing to share our story.


Miggy:  What is the biggest lesson you’ve learned since becoming Ryder's mom?   

Kayleen:  Patience.  Ryder has made progress beyond what was expected at the time of his diagnosis.  He is a fighter!  Ryder’s speech issues have taught our family patience.  We’ve learned that we have to focus on one thing at a time.  It is important to set big goals, long-term ones.  But, also set small, short-term goals.  Ryder, Harvick, and Jarrett are remarkable children.  They are resilient.

Thank you to everyone who has read this Spotlight!  If you would like a bit more information, feel free to browse our family blog (http://hansen-family-updates.blogspot.com/).  My first post about Apraxia (http://hansen-family-updates.blogspot.com/2012/01/apraxia-of-speech.html), and a follow up a year later (http://hansen-family-updates.blogspot.com/2013/01/apraxia-of-speech-1-year-week-45-54.html).   Also, the Childhood Apraxia of Speech Association of North America (CASANA) has some great information about CAS, and resources for parents (http://www.apraxia-kids.org/).

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A huge thanks to Kayleen for sharing her adorable children and her insightful story with us.  I'm always reminded that there is such a variety of stories and situations out there and we should always try our best not to judge, especially when it comes to parenting--we never really know what someone is dealing with.  Kayleen was a little hesitant to approach me because she didn't think her son's condition was as serious as some of the kids I spotlight.  But I'm so glad that she did.  It's important to share a range of stories and experiences, and if there's one thing I've learned it's that we shouldn't compare our stories and struggles.   I've talked to moms who are venting about a situation with one of their children and then they'll stop and say, "While I'm sure that's nothing compared to what your dealing with," or something of the sort.  But guess what?  I still struggle with a lot of little things too--laundry, temper tantrums and who in the hay-all ate the last piece of chocolate?  It's not all about limbs over here folks.  Anyway, thanks Kayleen for sharing your story... I know there is more than one person out there who will relate to what you said and will appreciate your perspective.  And serious props to you for being such a mama bear for getting the necessary help your son needed--that alone is a wonderful example of the type of advocacy it often takes to get our children the proper help.  Hugs to those cute kiddos of yours!

If you or someone you know would like to be part of the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend!     

10 comments:

  1. I loved the line, "regardless of logic, I felt sad." I get that & struggle with this a lot. Often I tell myself I'm not allowed to feel sad about my kiddos' struggles/challenges/frustrations/bullies etc. as I should just be thankful they are alive. And I am.... But maybe I can be thankful they are alive and filled with joy at their lives and also hurt and ache when they are hurting and maybe it doesn't have to be so logical or make sense after all-
    She's given me something to think about with that line- thanks for sharing!
    Katie

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    1. Katie, thank you for sharing your thoughts. I still have a hard time saying that it makes me feel sad, but if I'm being truthful, it does. I think you comment of being thankful and filled with joy for them, while also hurting over their struggles was exactly what I was feeling too. Also - I clicked over to your blog - your children are absolutely adorable! I LOVE the tree(branch?) picture in your header!

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  2. Natty9:53 AM

    My darling nephew has this same condition. It has been amazing to see his progress as he has gotten older. He just turned eight years old and I don't think anyone who doesn't know his history would be able to tell how much he's had to work to get to normal speech. I remember how much patience his mom and dad had in helping him communicate and how heart wrenching it was at times. One night his mom was putting him to bed and he kept saying something he wanted over and over. His mom was trying so hard to understand him but could not figure out what he was trying to say. They were both in tears and finally she told him she didn't know what he wanted and he just rolled over and said "ok." Oh it still breaks my heart to think about it! Hang in there and don't give up! You are an amazing mom! As a fellow mom of three boys with two of them twins I admire you all the more for what you're doing! Much love to your family!

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    1. Natty, thank you for the kind words. It is so encouraging to hear about other children who have been able to improve to such a level that people wouldn't be able to detect their struggles with CAS. Thank you for sharing.

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  3. I have a child with a metabolic disorder and sometimes I think the same thing that she isn't "special needs" enough for things like a spotlight. But she is and so is Ryder! You are a bravre woman and strong enough for your three boys!

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    1. Michelle, thank you for your kind words. I found your recent post about your daughter's metabolic disorder very enlightening. You also are a brave woman, and strong enough for your beautiful daughters!

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  4. I totally understand how hard it is to get the help your child needs. I had professionals telling me I was expecting too much from my child when I knew it was NOT me. Even one therapist asked him if his mom was pushing him too hard! I was livid. I have always been driven by what HE needs. It took us 6 years to find the right person (she is a Speech Pathologist, not therapist) that finally was able to pinpoint exactly what his problem was which as it turns out, wasn't just a speech problem. Now (4 years later) he is doing great with his speech and we continue working on his other issues.

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    1. Kiki, I can relate to having to be your child's biggest advocate! Best of luck to you with your son's journey.

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  5. This was really interesting and I'm so glad you shared! I'm curious, is this common to have run in families like this?

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    1. Kim, thank you for your support. In my research, I have found very few families with multiple children affected. The Children's Hospital that diagnosed Ryder told me that they have never treated a sibling set with CAS. Social media has been a great resource for me - I have been able to connect to other families affected by Apraxia, including one whose twin daughters both have CAS.

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