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Special Needs Spotlight: Ethan

 
 
My name is Hayley, a 32 year old stay at home mother to two
wonderful kiddos.  My wonderful husband, Garrett is a 31 year old high
school math teacher, and he is probably one of the best husbands/fathers
around!  Garrett and I met when were in middle school and we have been
great friends ever since, which means we love to laugh together and we
understand each other more than words can express.  Our
two children keep us extremely busy!   Ethan is almost 5 years old and
Ainsley is 2.5 years old,
which means constant play dates, trips to the library, and lots and
lots of coloring and dress up.  Ethan was diagnosed as severely
autistic, which means much of our week also includes therapy and
behavioral management.  When we aren’t caring for the kids, Garrett and I love to redo our house, which we chronicle on our blog:  http://cometothemousehouse.blogspot.com   Redecorating and fixing up houses is something we have both enjoyed for a long time!
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Miggy:  Can
you take me back to the early days, when you knew something was not quite
“right” with Ethan?  What were some of the first signs and
symptoms of Ethan’s autism and when did you get a concrete
diagnosis?  Do you remember how you felt?  Can you compare
those first thoughts and feelings with how you feel now? 
Hayley:  Ethan
was born prematurely in 2007, which started out our journey as new parents in a
very scary way.  Because of this, I truly believe that we were much more
aware of his behavior and milestones.  I think we knew that something was
“off” by the time he was 4 months old when Ethan was just not
connecting with us and I succinctly remember feeling a distance from him.
 By the time he was 9 months old, I absolutely knew that something was
wrong, so I set up the appointments for Early Intervention to come check him
out.  The therapists that came out agreed with me almost immediately….
there was something not quite right and he would need multiple therapies.  Some
of Ethan’s earliest signs/symptoms were hand flapping, head banging, lack of
eye contact, hysterical crying, biting himself, lack of speech, and stimming.
 He has always had a difficult time, socially, but he is so amazingly
smart.  
We
got Ethan’s official diagnosis of Autism right when he turned two.  There
was no question in the doctor’s mind and we fully agreed with the diagnosis.
 Some people would feel grief-stricken, but we honestly felt relieved that
we could move on and continue caring for him in the proper way.  Once you
get a diagnosis, a whole world of opportunities opens up!  At
first, we were fine, but we have definitely cried many times after we realized
how difficult it is.  We are scared of Ethan’s future and our futures,
too.  Recently, Ethan was reevaluated and went from “mildly
autistic” to “severely autistic”.  That was extremely
upsetting and hard to hear, but we will work through it as a family, just like
we did before.

Miggy:  Autism
is once again on the rise with recent stats saying 1 in 88 children will be
diagnosed as being on the autism spectrum.  What advice do you have for
someone who is either new to the world of autism or who suspects their child
may be on the autism spectrum?  
Hayley:  My first piece of advice to anyone that suspects Autism is to immediately get
help!  Do NOT waste time “waiting” or “hoping they will
grow out of it”.  Even if it turns out to be nothing, therapy will
never harm a child, but can only help.  There are so many programs in
place, including Early Intervention, for families living with Autism.  Not
only are there therapies, but there are support groups, help for medical care,
and activities. 
 
Miggy:  Explain
how Ethan’s autism affects your day to day life?
  
Hayley:  I
have to be honest.  This is the part of Autism that makes me upset.
 Ethan’s autism affects all of us in so many ways and it often makes me
sad, angry, and disappointed.   For instance, we can’t go play outside
when it is windy because Ethan will have an uncontrollable meltdown.  We
don’t often get to go fun places with our daughter because it wouldn’t be fun
for Ethan.  There has never been a time where birthday parties are
enjoyable for him.  It makes us really sad that he can’t enjoy the
“typical” activities and we feel like he misses out on so much.
   More so, I often feel bad for our 2.5 year old daughter because
she has to live her life revolved around what Ethan likes and doesn’t like.

Miggy:  What
are the biggest worries you face for Ethan?  
  
Hayley:  Hands
down, we worry about Ethan’s future.  Will he ever be able to have real
friends?  Will he get bullied at school?  Will he be able to even
function in a normal classroom?  Will he be able to get a job and be
successful in life?  These
questions scare me so bad.
Miggy:  Now
for a lighter question, have you ever had any funny conversations/moments you
never imagined due to your special needs situations?  This question came
about because I never envisioned saying things like, “Where’s the babys
arm?  Did we bring her arm?”  While strangers look on like we’re
crazy people.
 
Hayley:  Haha, that is so
funny!  And YES, you have no idea some of the hilarious conversations that
occur in this household because of Ethan.   Funny that you mention the
baby’s arm…. Ethan always has to have a number or a letter with him.
 One day, we couldn’t find the “A” from his puzzle.  Right
in the middle of the store, I hear “Mom!!!  I need that letter to put
into the A Hole~!”    I just about died, right on the spot.
 

Miggy:  How
can people best approach or respond to your child? Is there something you wish
other people knew so as to avoid awkward or hurtful situations?
 
Hayley:  This
is really hard to answer because it totally depends on Ethan’s mood.  With
Ethan, you just never know how he will react to situations, so we just hope for
the best.  Some days, he is totally fine with people saying “Hi”
to him, whereas other days, he will completely scream and throw a fit.  

 

I
do wish my friends would ask us over more for playdates.  I have
definitely found that people are worried about how Ethan will act and that
makes me really sad for both of my children.  
Miggy:  Tell
us something you love about Ethan.  A story, a trait or anything really
that is just so “Ethan.”
Hayley:  Ethan is my baby and always will be.
 He is the little boy I dreamed of having and autism will never change
that.  One of the best things about Ethan is his ability to make me smile.
 I am a stay at home mom, but I also do a lot of sewing.  When people
ask Ethan what Mommy does for work, he simply says “She doesn’t work!
 She is a Mommy!  Oh, but she does play with her sewing machine a
lot”.  Thanks, Buddy 🙂
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Hayley, thank you so much for sharing your beautiful Ethan with us.  His little leather jacket and faux-hawk?  Cuteness overload!  I appreciate your candid and straight forward answers–especially for those moms who also have a child with autism or are worried that their child may have autism.  This is valuable insight and information.  
As always if you or someone you know would like to be featured in my special needs spotlight please email me at thislittlemiggy at gmail dot com.  
Have a great weekend!     
 
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