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!     

Almost Forgot...

I was invited to be part of a show (an art show) of BYU alums in Salt Lake City.  Trust me when I say I'm honored to be included in this group of artists.  The opening is this Friday and I'm so sad that I won't be there.  If there are any Utah locals out there you should really try and go, it will be worth your while, I promise.  If anyone happens to go will you send me a picture or two?  Thanks, you're the best.  

On the Ball

...actually off the ball.  I've been a little off the ball over here.  We've had engagements almost every night the past week with more to come.  And sometimes you just need a break from blogging.  Consider this my break... but you should know by now I can never stay away for long.

Please come back this Friday for a fantastic Spotlight.

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Also, might as well share a quick story from our morning.  Lest you think my sweet natured 2 year old is always a little angel here's proof that she too was blessed with the sass gene.  While playing in her sisters room this morning she came across a small pack of peanut M&M's.  Somehow she managed to open it all by herself and eat every last M&M.  When her big sister caught her in the act, she wasn't too pleased.  I explained to Lamp that those weren't her M&M's and it wasn't very nice to eat them all.  Her response?  "Too bad so sad, I ate them all," said in the sassiest voice she could muster.

I don't think I was a very effective parent after I busted up laughing.
Big sister however, was less amused.

Post Mother's Day Thoughts

When I was a freshman in college I took guitar lessons.  Slowly but surely I learned my chords, strumming pattens and even some picking patterns a la Dust in the Wind.  After playing for about a year I thought I had arrived.  I truly thought I was an amazing guitar player.  It was only as I continued to play and improve, I mean actually getting better, that I realized how terribly average and inadequate I was.  Having no experience at all made me think I was amazing.  It was only by getting better and better, becoming more familiar with other people who played, that I humbly realized I was just OK.

So it has been with motherhood (and many things in my life actually).  While I don't remember the day specifically I can sorta see myself that first year celebrating Mother's Day as a new mom, with only months of mothering under my belt thinking, OK, bring on the gifts and the cards and the accolades because I am killing. it.  Truth be told I knew I was not killing it, but I definitely had the idea that I deserved a gold star for this new life filled with a kind of hard work I never knew existed before and for actually doing it.   I deserved praise for being a mother because that's what Mother's day is about.

Now, a mere 6 years later, my feelings about Mother's Day couldn't be more different.  As my husband and girls came in the room singing Happy Mother's Day to you! with breakfast in bed a smile crept over my face and quiet truth filled my heart, I get to be a mother.  My daughters snuggled in next to me and before I could even take one bite it was Can I have a strawberry?  Mom, I want some grapes!  I smiled and bestowed their simple requests because what could be more motherly than sharing your Mother's Day breakfast with the very ones who made you a mother in the first place?  Oh sure I still like the perks of Mother's Day--homemade cards, sleeping in, breakfast in bed, chocolate...  And when my husband asked if I wanted to help make a salad I was sure to let him know with a wry smile this was the one day I wasn't going to help with dinner.  But the overall feeling of Mother's day is a day of gratitude.  A heart full of love for these little people who call me Mom.  What I know now that I didn't know then is that being a mother is an honor and a privilege.  It's not something I've earned and I don't particularly deserve it.  Why I've been given this opportunity while other women, many of whom I consider my superior, haven't been given this chance I'll never know.        

It's no secret that motherhood was not an easy adjustment for me.  It didn't feel natural and there was no instant love-at-first-sight feeling.  It was overwhelming, it felt bigger and harder than I could have imagined.  How could such a tiny baby turn my whole world upside down?  Of course I was dealing with PPD as well, so there was that.

But the love did come.  The same overwhelming, heart-walking-around-outside-my-body, I-would-do-anything-for-this-creature love that I had heard so much about.  It wasn't all at once, it's was little by little.  It came as I nursed and woke up in the middle of the night.  It came as I walked up and down Ft. Washington 2 hours at a time with a sleeping baby strapped to my person.  It came as I rocked and rocked and rocked her to sleep, tracking her naps and doing my best to never let her get 'overtired.'  For me, the love came with the day-in and day-out care of this little person.  It came as I turned my life away from selfishness and towards service, away from the idea that I was doing some great thing and to the fact that any greatness in the equation resided in my children.  Personally I have found a great lesson in my road to motherhood... a lesson about service and our ability to love, but that's another post for another day.

I know Mother's Day can be hard for a variety of people for a variety of reasons--infertility, loss of a child, miscarriage, a difficult relationship with your own mother, wanting to be married with children and not being in that position, etc.  But for me, what I celebrate most is the fact that Motherhood exists at all--the great force for good it has been since the beginning of time.  The fact that I ever became a mom is still something that I marvel at.  It is a gift.  A gift I could never repay and one I strive to be worthy of, all while whispering a quiet, Thank you. Thank you for letting me be a mom.

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When the real history of mankind is fully disclosed, will it feature the echoes of gunfire or the shaping sound of lullabies? The great armistices made by military men or the peacemaking of women in homes and in neighborhoods? Will what happened in cradles and kitchens prove to be more controlling than what happened in congresses?  
                                          --Neal A. Maxwell

Special Needs Spotlight: Parker

 

Hello!! My name is Anna Dietzen and I thrilled to share our journey into the world of special needs through our beautiful son Parker. I am the wife to Nick-a handsome, hardworking CPA and mom to Parker (2) and Lane {6 months}.  My husband and I met in college and were married in 2007.  A few years later we decided to start a family and before we knew it we were pregnant!  The pregnancy was wonderful and I loved everything about it, even his birth was a great memory and we were so excited to start this journey into parenthood.  At his 2 month check up we were referred to an ophthalmologist due to some abnormal eye movements. He was diagnosed with rotary nystagmus {the involuntary rotation of the eye}.  While this was devastating for us to hear at first, this was just the beginning.  At his 6 month check up he was pretty delayed on his milestones and so we were referred to a neurologist, who suggested we get an MRI to look for a brain abnormality.  Parker went in for an MRI in March of 2011, and was diagnosed with Joubert Syndrome the next day.  Joubert Syndrome is a rare genetic disorder that is characterized by partial or complete absense of the cerebellum.  It can cause decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing patterns and cognitive impairment.  Despite the unexpected and initial devastating diagnosis, Parker is the greatest blessing we could have ever received.  His brings us so much joy everyday and has taught me more about life than I could have ever imagined.  If you are interested in learning more about our Unexpected Journey you can check out our blog: http://www.nickandannadietzen.blogspot.com.

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

Anna:  When our pediatrician referred us to the neurologist, I honestly expected it to be a quick appointment where he would tell us everything was fine and we would be done.  When the neurologist checked out Parker and told us he was pretty confident that Parker had a brain malformation, my entire world crashed.  I couldn't believe what I was hearing.  I knew that Parker was behind on his milestones, and something seemed a bit "off" with him, but never in a million years did I think there was something wrong with his brain.  My husband and I left that appointment in absolute disbelief, we embraced each other and just sobbed until we had no tears left.  This perfect little baby of ours had something wrong with him and there was nothing we could do about it.  It was such a helpless feeling.

About a week after our initial meeting with the neurologist, we had the actual MRI that diagnosed him. Having the actual diagnosis and knowing how to move forward was actually quite a relief.  Once we were able to process through the initial shock of what it could be, we were relieved to learn what the actual diagnosis was and what we could do to help him.  Although there is no "cure" or anything to take away the obstacles, we were excited to get  him started in physical, occupational, and speech therapies.  Looking back it's amazing to see how much I have grown as a person.  This whole unexpected journey has taught me so much about myself, about my faith, my relationships, about love in general.  I never could have fathomed that in Parker's short time he would change our world in the best way possible.  Our life would not be as full, our marriage wouldn't be as strong, our family wouldn't be as close, and I wouldn't be the mom I am without Parker teaching me something new everyday.  It sure has it's challenges, but it is so much sweeter on the other side. 

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

Anna:  Since Joubert Syndrome affects the cerebellum, which houses almost everything in your brain, Parker is globally affected.  He has low muscle tone, abnormal eye movements, slight speech delays, and some sensory issues. The biggest way that this affects Parker daily is the physical aspect.  At almost 3 years old, Parker still is not able to walk independently.  He sat independently at 18 months, crawled at 2 1/2 and is just started to stand and walk with assistance. This affects his ability to play with other kids his age and do activities that most kids are able to do.  He is a determined little guy though and will find a way to get to and do what he wants!!  He is very motivated by seeing the other kids moving and wants to join along with them so bad. With his amazing progress and determination, we expect him to walk within the next year.  It is actually probably more difficult on me than him, as he is a pretty happy and content little guy most of the time.  It's more of a physical demand on me having to carry him everywhere {while also carrying our 6 month old}, or deal with the occasional outburst or fit of frustration.  But since this is all we have ever known, it is kind of "normal" to us and we just make due!

           

                                                                                               

Miggy:  What are the biggest worries you face for Parker?    

Anna:  My biggest worries for Parker are just the future in general. The spectrum of Joubert Syndrome is so broad that it is truly a case by case basis. There really is no baseline for what you can expect from each child, so it's just a day by day situation.  It's hard to know what the future will hold for us...what his struggles will be, whether he will live independently or not, if school will be challenging for him or not, and things I may not even know about that could become an issue.  I try not to think too much about these things because they can become overwhelming.  Instead I like to focus on the amazing progress he has made and allow him to be like any other 2 year old would be. 

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?

Anna:  The beautiful part of having a child with huge obstacles to overcome, is that when they DO overcome those obstacles or meet those milestones, it is an AMAZING moment!!  Just the other day Parker came in from playing outside and had huge rugburns and skinned up his knees, and although I was concerned about his knee bleeding, I was also laughing and celebrating because he was outside enjoying playing with other kids and doing his best to keep up.  He wasn't going to let the fact that he couldn't walk keep him from having a good time.  It's the little things that parents of typically developing children get frustrated with, that we laugh and celebrate!!  Everything is a milestone for us and I LOVE IT!   

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

Anna:  Because most people don't initially recognize that Parker has special needs, I sometimes feel like I need to say a disclaimer to people who don't know. Like, "Hi my name is Anna, and my son has special needs." This way it's just out there and people don't have to wonder or avoid the topic.  I think the best way people can respond to Parker is to just treat him like you would any other normal kid and try and include him in as much as possible.  Sometimes I think people are afraid to ask or worry that I will be sensitive to the topic, but I would rather someone ask me about Parker, than avoid it or treat him differently. 

Miggy:  If you could say something to the mom who just starting on this journey of special needs, what would you say?   What would you say to yourself if you could go back in time?    

Anna:  I would first off give her a HUGE hug and tell her I understand.  That I've been there and I know it hurts.....but that it DOES get better.  That she will experience life in a whole new way and she will live a richer, fuller, and sweeter life than she could have ever imagined.  That there will be dark days, but the good days will be that much better. That she will learn to love in a way that she never would have thought possible and her child will touch lives that she could have never dreamed. 

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?   

Anna:  This is a tough question to answer!  What haven't I learned since becoming a special needs mom?! :)  I think one of the biggest things I have learned is confidence.  Confident in who I am and who I was created to be.  I never knew what I was capable of.  I had no idea that I could be this strong and that I would become a "warrior mom."  That I could endure so much and advocate so strongly and be confident in the fact that I am the best mom I can be for him and that God created me specifically to be Parker's mom. And despite his special needs, be confident in the fact that Parker was created PERFECT and is my inspiration every single day!!!

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I want to thank Anna for sharing her sweet Parker with us.  Anna, I really feel like I could feel your joy and love for Parker leaping off the page.  It is infectious.  I loved so much of what you had to say.  Like you, I do not dwell too much on what our daughters future looks like, but I enjoy her now, and yes! everything she accomplishes is a huge milestone for us and that's so exciting.  But I loved what you said at the end about becoming a more confident person and mom, an advocate and that you know you're the best mom for your son.  So beautiful.  Thanks again Anna.  

As always if you or someone you know would like to be part of the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.  Please keep them coming!  And if I haven't emailed you back yet, please be patient with me!  

Have a great weekend! 

Lately

Celebrating Cinco de Mayo with friends

Life has felt a little lazy lately.  Meals on the fly, projects taking their sweet time, the house a little more cluttered and many evenings just spent puttering about doing not much at all.  That being said, we have been having some great friend get togethers and feel as though we've sort of found our tribe (I kinda hate that phrase, but whatever) which has left us feeling a difference sense of fulfillment.  It's been great actually.  A lazy yet friend-filled life is probably why there's been a little less blogging.  That being said, a huge thank you to all of you who wrote me for new spotlights.  Thank you.  Please, keep them coming.

Turns out artichokes grow like this...thanks botanical gardens.

An evening at the botanical gardens--first strolling around and watching a viewing of Roman Holiday.  I love this moving and it has been a long time since I last saw it.  It was even more wonderful after having just returned from Rome.  Viva Roma!  If you live in San Antonio, there is another show this Friday night--the Jimmy Stewart classic Harvey.  Info here.    

Just doing a little standing while watching Doc.  Doc McStuffins that is.  She only stood for a few minutes, but it was cute.  Obvs.

 Sneak peak of the quilt progress.  Slowly, but surely...

Lastly, Sunday morning I wake up to my husband, the incredible B, teaching PSP how to sew.  She already made her first project-- a little monster like plush toy aptly named Chicky-Star (there are little birds on the front side fabric and stars on the back side).  I love this.  And I sorta hate it.  I feel like I should be teaching her to sew.  But when she came to me I had a bazillion reasons why I couldn't do it right then.  In my mind teaching her to sew meant hours of research about safety, easy first projects, what to teach first (hand sewing vs. machine), etc, etc.  So on a Sunday morning when I was sleeping in PSP asked her dad to show her and he just jumped in.  He looked up some patterns and they went for it.  I realize that having just stated that not only did my husband let me sleep in on Sunday morning, but also taught our 6 year old how to sew during that time makes him a demi-god.  I do contribute to this marriage, I promise.  Anyway, more often than not I need order and organization to move forward with something.  Not just a plan, but an a conducive environment in which to execute this plan.  I'm learning more and more the need just to jump in and let go, especially when it's a seize-the-moment opportunity.  Most opportunities, especially in parenting, come at inconvenient times.  And like so much in life, if I wait until I feel ready, I'll never be ready.   Not that it's all bad being the way I am... we balance each other out B and I.  But still a lesson learned.

So thats us lately.    

So It Begins

 
I saw a flyer for a school talent show in PSP's back pack one day.  It listed the dates of the talent show and try-outs.  I calmly and with-no-big-expectations-here asked her, So are you going to try out for the talent show?  Her response?  A quick no.

OK.  Done and done.

Then a couple weeks later PSP casually mentions on the way home from school that her and two of her friends are going to try out for the talent show.

You are?  
Yeah.  
What are you going to do?  
A dance.  
Oh.  Do you have a routine?  
Yeah we've been practicing some moves.  
Uh, do you need to get together and practice outside of school?  
No.  
Okaaay....

I decided to just let it go.  The tryouts were in a couple days, and if they didn't really have anything together then they wouldn't really try out and that would be it.  Right?  Yes I'm not sure the whole ignore it and it will go away approach is the best way to go, but it the moment it was the easy solution.

As fate would have it, 2 days later as I was dropping PSP off at school two moms were standing there talking about their daughters wanting to try out for the talent show.  Then one of them points in our direction and says, Yeah and wasn't PSP the third girl?  I know these moms, but I didn't connect that they were those girls moms and what are the chances we'd all be at the door at the same time anyway?  What?  Suddenly I find myself offering up our house as a practice space that afternoon since you know, tryouts were the next day.  And of course if I'm having 2 of my daughters friends and their moms over, I have to have some sort of food.  So I bake a coffee cake.

That afternoon everyone comes over.  The girls are super excited, basically just running around having an after school play date.  Finally, we get them to come over and show us their "moves."  They have 3 moves.  Us moms kinda look at each other.  Can you dance?  Do you have dance experience?  Suddenly scenes from About a Boy are flashing through my mind as I realize my daughter might be proverbially about to sing Killing Me Softly in front of her entire school talent show and someone has to step in and be the proverbial Hugh Grant in this situation.  Being a former high school cheerleader and Pom (dance team) I step up.  I help the girls choreograph a simple dance.  We practice, practice, practice until they get it down.

To recap I hosted a get together, made some food and choreographed a dance routine for my 6 year olds school talent show with about 8 hours notice.

Am I trying to tell you how awesome I am and to please give me a pat on the back?
Yes.  Absolutely.  I aced that one.    

And so it begins.... a small peek into my future of having children in school.  Last minute runs to the store for poster paper, science projects due the next day, a castle built out of sugar cubes (a real life example from my school days), last minute signatures for a field trip... the list goes on and on.   There is a big part of me that wants to set up parameters and systems for our home so this doesn't happen.  But no matter what, it's going to happen.  White flag, I surrender... it's just going to happen.  

And so it begins....


PS. They made it into the talent show.
(She shoots, she scores!)


While these mud pictures didn't have anything to do with the post, they were sort of a lovely visual metaphor for letting go and surrendering to the madness, no?  

Call for Spotlights

Hey guys!  So here's the deal, I need some people to spotlight!  If you or anyone you know would like to be featured in the spotlight series please email me or have them email me directly.  Please don't send me an email telling me to contact your friend... it's a lot more work and it rarely results in a spotlight.  But please do have your friend email me with their incredible stories!  And as you may have noticed, we've had some great spotlights that are a little different from our typical ones.  I've interviewed a sister who was raised with 3 special needs brothers, a family whose daughter passed away due to her illness and a woman who has special needs herself.  So please don't think this is limited only to parents of special needs children, although that is certainly wonderful as well!    

Thank for all your support.  I love this little blog, I love doing these spotlights and I really love my readers.  It's so wonderful to feel your love and support for my little family, but for the other wonderful families who share their stories on here as well.  Thank you, from the bottom of my heart, for making this blog what it is.  

*****

Now I'd like to share a really cool video that features the merging of special needs and technology.   I know a lot of buzz has been going around regarding 3-d printing... I think this is perhaps the coolest example of what 3-d printing is capable of doing.  And it's amazing to see just how much technology can do for specific special needs, in this case it really seems like a perfect fit.  Check it out.  

 To read more about the WREX and 3-d printing go here.

Have a fantastic weekend.