Friday, April 13, 2012

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!     
 

6 comments:

  1. Thanks so much for asking me to share my story. I linked it to my blog, hope that is okay!!

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  2. Thanks for sharing Ethan's story Hayley, he is so lucky to have such a great mommy!

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  3. What a great story!

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  4. I loved how you shared Ethan, Hayley!

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  5. I read this last night and keep thinking about it. The A-hole story made me laugh out loud! What you wrote about your concerns over your little girl having to revolve around Ethan's likes and dislikes and having to miss out on some things that she would like resonated. My situation is different than yours, but I kind of know that feeling and I remember telling my sister about it. She told me, "Teaching your children to sacrifice for each other isn't something to feel guilty over" and that has stuck with me ever since, so I hope you don't mind me sharing that. I imagine your little girl will develop gifts of love, empathy beyond the norm. Your Ethan is certainly a blessing and blessed. Sending love!

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  6. Thanks so much Hayley! Reading other parents' stories about their child w autism is so therapeutic for me. I appreciate your words so very much!!

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