Friday, June 28, 2013

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.   

8 comments:

  1. Ciara9:55 AM

    Kaylee looks like such a sweetheart! I have anxiety and you are so right about the good and not so good days, thanks for sharing!

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  2. Your girls are gorgeous! My son also has an anxiety disorder that we are very open about-I find it helps people understand a little more instead of just thinking we are "pampering" him or that he is a over reacting. It was refreshing to read about your openness. Thanks for sharing, Kristen @ onein1hundred.blogspot.com

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  3. Hey! I know Andrea! How fun!! We were pregnant together with our first babies. She is such a great mama.

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  4. The school principal & I use to joke about "using powers for good not evil" in relation to a gorgeous little boy with ODD who was in care with us for many years. We also had a little boy with ADHD for a long time. I also found it very frustrating when people assumed it was just bad behaviour because we must be bad parents. I had to bite my tongue many times.

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  5. Wow, I really loved this one. I have bipolar 2, with mania presenting as severe anxiety, so I feel like Kaylee and I have had some similar experiences. Someone once said to me that the good comes with the bad when it comes to mental illness. I am a highly sensitive, creative, and intelligent person, and having a mind that works like that can come with some difficulties as well. I love the mind that I have, and I have to take the bad mental stuff along with the good. I hope Kaylee grows to love her mind in the same way, she seems like an amazing kid.

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  6. Wow. Thank you so much everyone for the sweet and supportive comments. I was nervous to share our story but I'm so glad I did!

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  7. Anonymous5:39 PM

    Thanks so much for your story. I also have an anxiety disorder and have had to deal with it for only a few years. I admire your strength and optimism. She is an amazing kid.

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  8. Amazing story! ADHD in children is really difficult. You need to manage things in a very special manner. You also have to come up with the correct approach and attitude towards it. I'm glad that you're handling everything perfectly well with your daughter. She'll get through this with proper guidance. Best regards from Lisa

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