When I Get Bigger...

Lamp hugging her new friend

One thing B and I marvel at is the innate patience our little Lamp has.  It is not the normal patience of a toddler--in fact it is not the normal patience of most adults.  Sure she still wants her Cheerios the second she wakes up in the morning and if you tell her she can watch Doc McStuffins then why isn't it on already???  But there is another type of patience in which she sees things far in the future and seems very content not to have it now, but just to know that one day it will happen.  These are her "When I get bigger can I...?" questions.  She's been posing these questions for a long time, but recently I've tried to record as many as I can.  Here are some of the latest ones.

When I get bigger can I....

...walk and do the dishes?
...walk to the park by myself?  (not alone, she means walk independently)
...walk and go?  And open the front door?
...be a ballerina?  
...can I walk and hold your hand?  And walk with dada and sister too?
When I grow up will you do a hairstyle on me too?  Thanks.
When I get bigger can I climb all the trees?  I'm gonna climb that one and that one and that one and that one... and so on for about 20 trees.

And there are so many more.  Some of these questions are regular things any toddler has to wait until they're bigger for, but many of these questions have to do with walking and other very simple things she sees us and other kids doing all the time.  I always look at her, smile and say Yes, you can do that when you get bigger.  Sometimes I say it with a catch in my throat, but I always say yes.  The truth is I'm not sure she will be able to do all these things and it hurts thinking about it, but I'm not sure she won't be able to do them either.  So of course the answer is yes.

But really, I never get over the fact that all I say is yes and she is satisfied.  She is content simply with the idea of someday.  She doesn't get frustrated about it now, it's never asked when crying or angry... she just asks in her cheerful disposition and happily moves on.  Oh that girl.  She is remarkable.

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Like I said, sometimes I would get a lump in my throat because realistically it doesn't seem like she'll be able to do everything she wants to do.  Then I came across this video sent in by reader Gaye and honestly, I don't even have a lump in my throat anymore, now I just think Yes!  You can do that when you get bigger!  Please watch this video of another remarkable girl named Kayla Wheeler.  I love this girls attitude and her parents' attitudes as well.  As her mom said, "We always told her 'There's nothing you can't do, we just might have to figure out a different way for you do to it.'"  I've always tried to have that mindset, but now I really believe it.  Please watch this video--it will blow your mind!

It's not just all the amazing things Kayla does, it's also her overall confidence, demeanor and attitude about life.  No pity parties here.  Such an inspiration.  This video is a few years old, I would love to somehow find Kayla Wheeler and her parents.  Such a great role model for kids, but especially kids like Lamp.  Virtual hugs to Kayla and her family.    

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I had a spotlight scheduled for this week, but as it sometimes happens real life gets in the way.  We should be back for more spotlights next week.  But PLEASE, I'm still looking for and always needing new spotlights.  So if you or someone you know would like to be featured in the Special Needs Spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.

Have a great weekend!  

Kinder-Crush

The hair bow.  Her most requested do lately.  The first time she wore her hair like this she told me a lot of kids noticed it... especially Joe.

I don't remember the first time she brought him up, but sometime early in the year PSP developed a crush on a little boy we'll call Joe.  She would smile when she talked about him, but not in her usual smile...there was a bit of reserve there.  You know, smiling but not too much.  She told me she thought Joe was cute.  She would tell me when Joe said hi to her, or what their interaction was like on the playground that day.  She also told me when Joe would ignore her.  When walking home from school she'll survey the grounds trying to see if she can find Joe to wave goodbye.   Not often, just sometimes.

None of this really surprised me or worried me.  I know that even as a young girl I had my crushes and so it has all felt very relaxed and normal.  That being said, I had two main concerns...or points of interest shall we say.

First, when she told me about Joe ignoring her or I think even on one occasion telling her to go away or something... I was surprised by how quickly my protective mom instincts kicked in.  A few years ago, the child-less me would have laughed and thought, That's boys for you...get used to it.  But the mother in me thought, Who does this boy think he is?  Doesn't he realize he has caught the attention of the most beautiful, bright-eyed girl in the entire kindergarten class and he's just ignoring her?  And I wanted her to realize that if this was how this Joe kid was going to treat her, well he wasn't worth her time.

I really only thought that for a few minutes before I realized that we're talking about a 6 year old boy who play-fights with pretend nun-chucks during recess.  But it got me thinking about high school and college and I suddenly realized how hard it must be for parents to watch their children navigate the dating world and sometimes be undervalued, mistreated, dismissed and broken-hearted.  And I even saw myself in some of those situations suddenly wishing I would have cared more for my self-worth than the attention of some pretty unimpressive guys.  That is going to be much harder to watch than I previously thought.  That's point one.  

However, my primary point of interest in all this crushing has just been the fact that she felt comfortable talking to me about boys in the first place.  My little girl talked to me about a boy.  That she has a crush on.  This has felt like a major mom coup.  I want so many things in my relationship with my daughters, but especially I want them to feel comfortable talking to me about boys and relationships and feelings... and of course sex.   It is delicate, delicate territory.   Even as a little girl I know I wasn't comfortable talking to my mom about those things and I'm not sure why.  I think there may have been teasing from my family, or even just some comments that made me feel silly and sure enough I decided at an early age that this was something I had to keep to myself.

I'm not so naive to think that just because 6 year old PSP will talk to me about boys, it means that 16 year old PSP will talk to me about boys as well.  But I'm really hoping that's the case and I think much of that will be dictated by my behavior and how I handle these things in the early years.  So far I've made a valiant effort to talk about it nonchalantly, not making a big deal but not dismissing it either.  When she first told me about Joe I wanted to know who he was, so she pointed him out to me in the cafeteria.  I told her he was cute.  I don't ever tease her about Joe or about boys in general.  Sometimes she doesn't talk about Joe for weeks at a time, but every once in a while I'll ask her how he's doing or if she talked to him that day--again just to let her know liking boys is totally normal and good even.  I guess my main goal is to make these subjects comfortable, normal and even fun.  Yay boys!
  

Anyone else navigating these tricky waters?  What's worked or hasn't worked for you?  All kids are different and respond differently, but I'm sure there are some good general rules to keep in mind.  Also, did you feel comfortable talking to your parents about the opposite sex and crushes as a kid?  Why or why not?  

Fear

Fear.  The most troublesome four letter f-word in my vocabulary.

I'm a bit of a scardy cat.  I think about safety issues frequently and about how best to protect my home, my family and even myself when I'm out and about.  When it comes to guns I'm rather middle-of-the-road--I believe in the second amendment but I also support gun control.  Yes both, but please this isn't about politics.  In the end I just don't know that I would feel comfortable having a handgun in my home, around my children.  At the same time, I can certainly understand why many families do opt for that route.   I guess I'm a fan of preventive measures--alarm systems and dogs for example.  Then there are safety issues for when you're away from home...women being out alone at night are always a target.  I have to say being a woman and a mother I find it's hard not to feel a little fearful living in such a crazy world.  With the courageous rescue of the 3 women in Cleveland a couple weeks ago I found myself once again riveted to the news.  Even though I didn't know their stories beforehand, it was absolutely amazing that these women were found after all this time.  But over the coming days, I was reading more and more stories along the same lines--some of them with happy endings and many not with happy endings.  I eventually made a pact not to read the news for a few days and just let my mind rest and reprogram from all the overwhelming facts.

Although I sometimes find it difficult to do I really believe in and love the idea of not living in fear.  One of the best books I've ever read is called The Gift of Fear by Gavin de Becker.  While it may sound like it's all about fear! the basic premise of the book is that fear is an intuition that will come on naturally when the situation arises and it can actually help you figure your way out of a bad situation.  If you live in fear on a constant basis then you won't have access to the warning signals that fear can send your when you really need it.  He also teaches you to really listen to that gut instinct.  If you're someone who is concerned with safety, I highly recommend that book.  Also, I think these guys have some good thoughts about fear.  

So, a few months back I decided to purchase some pepper spray--not lethal, but at least something that could give me a little protection if the need arises.  I haven't been super consistent with it, but I decided that I would take it with me when Lamp and I walked to school to pick up PSP in the afternoon--my main concern being stray dogs, not unstable people.  Like I said, I wasn't super consistent but have started to walk out the door many a day only to turn around and grab it 'just in case.'  Last week was one of those days where I grabbed my pepper spray last minute and well, I actually ended up needing it.

Yes, I used it on a dog.  In my mind a dog sounds less scary that a menacing person, but as we all know a stray dog can be just as dangerous.  I saw the two roaming dogs as down our street and crossed to the other side while pushing Lamp in her stroller.  We passed them without any incident, but once we turned the corner one of them turned around and came our way.  As he started to approach us I turned around and tried to shoo him away.  He immediately started barking, growling and showing his teeth.  My pepper spray was already in my hand ready to disperse and I quickly sprayed in his direction.  Thankfully he promptly turned around and retreated.  (Although he didn't seem to be hurt too much by the spray...so I was a little concerned.  Maybe it didn't actually get him in the eyes?)  Anyway, we walked on without any further problems, but I was surprised how shaken I was after the incident.  Who knows if the dog would have actually done anything... I don't.  But I was so grateful to have been prepared that day so I didn't have to find out.  Especially with my 2 year old in tow.

I love the idea of being carefree and not being overly concerned with safety issues, but the dichotomy is if I hadn't been thinking so much about safety I wouldn't have purchased the pepper spray and I would not have had it on hand when I actually needed it.  Additionally, the reason I read so many articles about crime and violence is to be aware, for prevention, I tell myself.  If I know how other people have been hurt, I can avoid it.  At least that's my thinking.  But I also know fear causes me a lot more mental energy than it should.  And while there are facts that surround real-life stories, if I pay too much attention to the news I start to have a distorted view of the world and my surroundings.

What role does fear play in your life?  Have you struck a balance between acknowledging the realities of life while not letting it affect your day-to-day?  Have you actually been in a life or death situation where you felt adequately prepared or conversely, underprepared?  Is it possible to completely block fear out of your life?  Do tell... but please, lets not get into politics.  :)  

photos

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!