Special Needs Spotlight: Kaylee

Hi! My name is Andrea.  My husband
Beau and I live in Utah with our two children, Kaylee (8) and Presley (5).  We’ve been married almost 11 years!  Beau just recently graduated from college and
works as a System Administrator for a marketing company and I am a
stay-at-home/on-the-go Mom.  Our oldest
daughter Kaylee was diagnosed at 5 with severe Attention Deficit Hyperactivity
Disorder (ADHD).  We have since learned
she also suffers from a Generalized Anxiety Disorder (GAD).  Both of these disorders are not that rare.  About 8% of children 3-17 years old have been
or will be diagnosed with ADHD and many children and adults also suffer from
some form of GAD, sometimes mild and other times severe.  ADHD and GAD symptoms can vary but for Kaylee
include restlessness, hyperactivity, impulsiveness, difficulty sleeping,
obsessive thoughts and concerns and anger.  Although everyday does not include every
symptom or behavior.  You can read more about our family at our blog here.  

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Miggy:  Hi Andrea!  I’m so excited to be
spotlighting you and your daughter today.  Your daughter has been
diagnosed with severe ADHD and anxiety disorder.  What were some of the
first signs and symptoms that told you something wasn’t quite right with your
daughter?  How long until you got a firm diagnosis and treatment?  Do
you remember how you felt?  Can you compare those first thoughts and
feelings with how you feel now?   

Andrea:   I like to say that we knew something was
“unique” with Kaylee before she was even born.  I had pre-term labor with her so we had
several ultrasounds and tests done every week.  I can remember the ultrasound tech telling me
they had never seen such an active baby.  Her Dad also has ADHD so we would joke that
she was going to be just like him.   Little did we know how true this would
be.   She was sick often as a baby with ear infection
after ear infection and she was diagnosed with Asthma at 7 months old.  Being a first time Mom I just thought maybe
she was a little more challenging than other kids but deep down I knew there
was something else.  Doctors really won’t
give a definitive diagnosis until kids start school so we went a long time just
trying to survive the challenges.  When
she was in kindergarten we took her to a specialist that has an ADHD
clinic.  There is a test that they can
give children (observing behavior, asking questions from parents and teachers)
and she scored at the very end of the spectrum, meaning she has a more severe
form.  I remember very clearly feeling
such relief that we now had an answer and that we could finally start a
treatment plan!  At the same time I was
sad because I knew that things would be more difficult for her.  Every day is different and brings challenges.  Most days I’m exhausted mentally and
physically.  I try so hard to stay
patient and understanding that many things are out of her control, but it’s so
hard!!!! I think this exhaustion is the biggest difference in last 3 ½ years.

Miggy:  Explain how Kaylee’s needs affect your
day-to-day life?

Andrea:   Kaylee does the best with routine and
staying busy, but at the same time not too busy.  She is most comfortable being at home but we
are constantly trying to find outlets for her energy and imagination.  Small changes such as changing the furniture
around in our house used to really bother her.  Today the beginning and the end of the school year
is very hard as she gets used to a new teacher and classroom.  The anger is a more recent symptom in the last
year or so and is probably the hardest thing for us to deal with right now.  She takes an extended release medication every
morning so until that kick in things can be a bit rough.  Some days are awesome while others not so
much.  Over the years I think we’ve
learned how to handle certain situations and make them easier.

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

Andrea:   I worry all the time, but that seems to run
in the family.   Some of my biggest concerns are finding the
right teacher each school year that has the patience and understanding of the
situation. We’ve found that a teacher that is consistent and has a good
routine, but at the same time loves and appreciates Kaylee works the best.  We have been so blessed with an amazing
principal that takes the time to find the right fit every year.  There is always a lot of uncertainty about
what symptoms/behavior issues she will have in the future.  Will she get better or worse with time?  She and amazes us and her doctor with her
depth of understanding.  A lot of times
though, she finds it hard to vocalize those emotions and concerns so it all
comes out in angry outbursts.  Because
she has a lot of impulsive behavior I hope that as she grows she’ll learn to
cope with these feelings!

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?

Andrea:   We try to be really open about Kaylee and
her ADHD.  I’ve seen what a blessing
modern medication has been for her and it is something we’re very open about.  Her little sister will sometimes walk over and
ask me if Kaylee has taken her pill today if she notices the day has been rough.
 A friend of mine told me a funny story
the other day that made me laugh.  Kaylee
was running around outside playing with a friend.  This friend stopped and talked to my friend
with an exasperated sigh.  She asked what
was wrong and she said, “I don’t think Kaylee’s pill has kicked in today yet!”
Maybe to most this doesn’t seem funny, but I had a good laugh.  This is our life and it’s nothing to be ashamed
of.  I’m thankful for good friends that
help us see the humor.

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

Andrea:   Because ADHD is not a physical disability I
think it can be hard sometimes for people to know or understand the situation.  It’s not always something that you can see.  A lot of times people assume that it’s just
bad behavior and I know that it can be frustrating.  Believe me, I understand.  I want people to know what an amazing child
she is.  She is one of the most artistic
and kind hearted little girls.  I think
that is one reason why I am so up front about it.  I would rather people know our situation then
assume something that is wrong.  I just
want others to see all that she has to offer the world.

Miggy:  I know from firsthand experience what a
special role siblings can play in your special needs journey.  Is there
anything you’d like to share about your other children and their relationship
to your son/daughter? 

Andrea:   Kaylee and Presley are best friends. They
really do have a great relationship.  Presley
is very patient and loves her sister so much, they are lucky to have each
other.  Sometimes when one child takes a
little more attention, it can be hard to find a balance.  I love the way they complement each other’s
strengths and weaknesses.  Presley is a
very special kid and we are so lucky to have her in our family.  She has the best sense of humor and can make
anyone smile. S he calls her Papa every day to sing “You are my sunshine!” just
so he’ll have a great day!

Miggy:  Tell us something you love about your
child–a special story, a personality trait or just something others might not
know.

Andrea:   One of the things I love most about Kaylee
is her kind heart.  She is very
perceptive to those around her and their emotions.  She tell me later that she noticed so and so
looked upset and will make them a card or do something nice to help cheer them
up.  She has the greatest imagination and
is an amazing artist.  She is so blessed
to excel at whatever she tries (did not get that from her mom) and I believe
she will do great things with her life.  She
is a natural leader and we like to joke that we hope she uses her powers for
good not evil!

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

Andrea:   I think that I have learned to not judge a
book by its cover. I see that parent in the grocery store with the child
screaming and throwing a tantrum at the top of their lungs and give them a
reassuring smile. I’ve been there and know exactly how it feels. I’ve had
people make judgments of Kaylee and our family because of behavior or how we’ve
handled situations. Honestly, kindness is the greatest thing. Just be kind to
those around you. You never know what they are going through. Sometimes just a
hug or a reassuring word that lets us know you understand we’re doing the best
we can is amazing.

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Thank you so much Andrea!  This is another one of those spotlights I think many people will be able to relate to–like you said ADHD is not that uncommon.  There are also people like me who have heard a lot about ADHD and anxiety disorders, but don’t really know what it looks like, feels like and what it takes to deal with it day in and day out.  So thank you.  I always love learning more about these wonderful kiddos and their unique challenges.  Your daughters both sound amazing and I loved hearing about how caring and kind Kaylee is as well.  And like you I’ve learned not to judge a book by it’s cover.  I’ve even caught myself about to make a judgement on a parent only to remember these spotlights and that I don’t really know what’s going on.  Thanks once again for the reminder.  

  

 As always if you or someone you know would like to be part of the Special Needs Spotlight series please email me at thislittlemiggy at gmail dot com.