Ava Grace's Closet: About A Boy

Monday, July 29, 2013

About A Boy

I "met" Michelle through this blog.
She reached out to me some time ago and we've been fast friends ever since.
It's funny how you can feel that you know someone that you've never met in person.
But I feel like that.
She is good people.
And I asked her to share her incredible story with me. With you.

Haden was born a perfect baby boy on Dec 12th, 2003. The first 9 months were heaven. I remember all of his milestones, took pictures, wrote everything down. At 9 months he is putting words together. With his little fingers waving he would say "bye bye mommy".

Those would be some of the last words that Haden would ever speak to me. 
sweet Haden {look at those eyes!}
 Going into his 10th month we decided to take our first family trip . Florida was too far a drive so we decided on Tennessee. I brought Haden to the doctor to make sure all of his vaccines were up to date. He needed his DPT shot, so like a good mom he got it. It was this that changed our life forever.  
While in Tennessee, Haden fell asleep in the car; when he awoke he said "hello sleepyheads!" but
he didn't look at me??  
Then, his eyes rolled up into his head and his arms and legs starting shaking. I had never seen a seizure before and thought Haden was having a heart attack. I got him out of the car seat and was screaming at my husband Jamie to stop the car because something was wrong.  I didn't know what to do so I jumped out of the car and ran with him in my arms down the road...looking or someone to help me.  Luckily, a lady stopped at a stop sign saw me and quickly got out of her car and ran towards us.  She grabbed me and looked at Haden and told me he was having seizure.  
She directed us to the nearest hospital.

Haden's seizure stopped and we were in the hospital searching for answers.  Why did Haden have 104 degree fever.  What made him so sick? When we left Canada he was healthy?  Where did he get the sickness in August? He didn't go to daycare. Wasn't around any other sick kids?

The doctors didn't have any answers for us.  They did a spinal tap to make sure he didn't have meningitis . They gave him Advil. Tylenol. Antibiotics.  
He was one sick little boy.

The drive home was the longest car ride I have EVER been on.

Finally back home. 
More seizures.  Not sleeping anymore. Not babbling anymore.
I wasn't hearing his voice anymore.
Sono's, EEG's, strobe light testing, blood work, genetic testing, food allergy testing..you name it he was tested.
He was assigned a neurologist.
His diagnoses was epilepsy and he prescribed phenobarbital . First drug my sweet boy ever got into his system.  What a nightmare.
He totally changed from a little baby that slept the night to a baby who could not settle himself.  
We tried everything!  Rocking, car rides, swings, wrapping him up in blankets, sleeping on the floor with him NOTHING worked.  The only way I can describe Haden trying to fall asleep was like watching someone who's skin was on fire! 
I cried so much because I felt like I wasn't doing my part as a mom. I wasn't helping him, I prayed so many times to God to please help him sleep. 
After almost a year of this torture we switched doctors and meds.  Finally, a new drug, clobazam.
It was an answer. For 3 years Haden went seizure free.

Things settled down and he started to get some language back. But he wasn't doing the things that little boys do.  Instead of playing cars or trucks he started to spin balls on the floor. 

I thought, wow, that's pretty cool.  He could spin several of them at the same time.  
He also wasn't too interested in other children or even talking or looking at me anymore. So many times I would hold his face and say "look at me Haden!",  It was almost like it pained him to do so.
More appointments. More specialists.
And in my gut, I knew.

Well, Mr. and Mrs. Scott your son has autism.

There it was. 
The A word finally out on the table.
My heart sank and stomach had a huge knot in it.  To this day that knot in my stomach has never left...truth.


Coming home Jamie and I didn't say one word to each other.  It was a fog really and I don't quite honestly remember much. All that I knew was I had to find a way to help him....fast.
I read stuff on diet, supplements, really crazy treatments, HBOT, swimming with dolphins, riding horses in Nepal, stem cell treatments in Costa Rica.
It was a world that was so foreign.
During this time I was really struggling emotionally , I cried so much, I prayed at the foot of Haden's crib nightly.  
I would ask God to please give me a little of him back , 
Please don't take everything from us.  
Please help him God.  Help our little boy.

It's hard to write this, very hard. I told Susan that it would get to a point that I would have to relive moments and that time in my life was not a happy one. We were both sad and grieving.  
You see, you grieve the child you thought your were going to have, or grieve the life that you thought you were going to have.
I never signed up for seizures, tests, oodles of doctors, specialists, drugs.
Michelle {isn't she gorgeous?!} // Michelle + her husband, Jamie
Other moms I knew were having children and I just didn't fit in with them.  
They would talk of things their kids were doing and Haden wasn't?? I had a hard time with everyone, because I had so much anger. 
I had so many really stupid comments said to me by "well meaning" moms.
Have you tried this?
Have you done that?
What did you eat when pregnant?
Or my personal favorite, "you know I wouldn't care if a had a baby with special needs, but it would be downs that I would pick"
Can you imagine picking your disability...why not autism? 
Got a thing against autism? 

TO BE CONTINUED.
one of Michelle's favorite photos of Haden
Thank you Michelle for sharing part 1 of your incredible journey with us here today! 
I know each and every mama reading this shares your pain and is in awe of your strength. 
Love you beautiful girl.
xo


21 comments :

  1. Susan thank you for providing Michelle with a platform to share her story. Though, as you know we do not have children - I can so relate when she says "grieve the life that you thought you were going to have." ~ I grieve for the life I had pre-accident and the person I was - But know that this detour is taking me to the person I am meant to be.

    Michelle, I felt the pain in each word you wrote. Tears streamed down my face. You are stronger than you know ... and I need to say that your wonderful (and absolutely adorable)son knows just how strong you are - he chose you to be his mama - because he knew you would care for him. Your journey will have many twists and turns - some good and some not so good BUT know it will make a (positive) difference in the world. Many hugs and blessings to you ... looking forward to reading part 2. xo C. (HHL)

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  2. As tears stream down my face...thank you so much for your kind words and encouragement. You never now what life will give you...and you HAVE to dig deep within yourself to find that reason to keep going...its ALL within us! Many many hugs oxox

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  3. As tears stream down my face...thank you so much for your kind words and encouragement. You never now what life will give you...and you HAVE to dig deep within yourself to find that reason to keep going...its ALL within us! Many many hugs oxox

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  4. Thanks for sharing this story. It is crazy how things can change so quickly. We have kids in our family that have Down Syndrome and Autism. Both kids are wonderful and a gift.

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    1. Thank you Kristin! And many many kudos to you! And yes you are so right that kids are wonderful and a gift!

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  5. Such a touching story! It's so amazing, though, that there is so much more info out there now and so many other parents going through the autism journey. That must be helpful to be able to get some answers/tips. He's such a cute little guy :)Best of luck!

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  6. Thank you so much for sharing! While my son is not autistic, he has celiac disease and is being tested for sensory processing disorder. I totally get what you mean about grieving what you thought your life would be like. I love all my boys more than anything, but dealing with auto-immune disorders, people's ignorance, etc... is a lot to take on.

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  7. I'm sorry you had to go through this, God loves you and Loves Haden and HE has a plan and a purpose for him, Press into HIM. Thank you for sharing your story. TEST= TESTIMONY
    Revelation 21:4
    New International Version (NIV)
    4 ‘He will wipe every tear from their eyes. There will be no more death’[a] or mourning or crying or pain, for the old order of things has passed away.”

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  8. Dearest Susan and Michelle,
    It is great for bringing stories like this out. Michelle can learn that she is by far not the only one. Knowing that Bill Gates is autistic and he is living proof that there is a future for them as well. Not making eye contact while speaking or living through sudden panics or rages, does not make them any less. Each family will have this problem somewhere and it is only lately that it has become more in the open and in the press. All those rude remarks reveal more about the person speaking them!
    Wishing all of you the courage and the strength for living your life; don't let the outside world affect you. Haden is a cute little boy and there are still so many things ahead of him.
    Hugs,
    Mariette

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    1. For Michelle ~ About Bill Gates and Albert Einstein:
      http://www.omicron.8m.com/autism/eingate.htm

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    2. Thank you Mariette! I look forward to reading that. Michelle ox

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  9. Dearest Michelle,

    I shouldn't have read this during my lunch break because now I cannot stop the tears. I cannot imagine being in your shoes and yet I know so many people go through what you are going through. Knowing that they make it and things might/will get better should help (though I don't really know if it actually will). I feel like these are just words and I cannot help you really, so I don't know why I am writing, but I thought I had to. You and your husband WILL cope with this, strenght is something you find when faced with difficulties and we all have a lot of strenght in us. Hope writing these posts helps you vent.
    Lots of hugs,
    Shruti

    missyinthemirror101.blogspot.com

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  10. Haden is my nephew. His mom is my dearest friend since we were, I can't even remember, in our early teens. I remember when Haden made animal noises with my daughters, his cousins, and "kisses" at the letter "k" in the alphabet book. Autism has stolen some things from us but has also taught us many more things. Even without words Haden has shown what a patient, compassionate, loving and wonderful little boy he is. Haden shines from his soul. Just look at those eyes. Haden has taught me to look beyond words, to look into peoples eyes, and try and understand their struggles, their hopes. Haden changes lives, Haden makes us all more compassionate, Haden has taught us all so much. We are all so proud of his Mom Michelle for sharing her story. Haden has been blessed with amazing parents who will never give up. We love you Haden, Michelle and Jamie and thank you for sharing, I know it must have been hard to relive your memories through words but I know that there are so many people who will find comfort in your journey and find hope in their own xo

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    1. Dearest Anne,
      Thanks for such a tribute from the heart! Likewise like you bring up here, that they teach us all so much, I often stated that I have learned to 'LISTEN' from the deaf... Yes, it is true, we with perfect hearing seldom DO listen with our ears, we don't pay attention. A deaf person, at least in Indonesia where we worked and lived, has been taught the Dutch system of reading lips. That way one has to make eye contact and look at the person talking to. It taught me so much about really listening, using your eyes and observing body language! For Autistic children it also is very much about observing their body language; they do communicate but only different. It makes us more observative too and it always has helped me in doing my training in seven languages. Reading their body languages as a 'gauge' for knowing if they understood what I taught them.
      This is a great discussion and we all can learn from each other!
      Hugs to all involved,
      Mariette

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  11. This is interesting to read. I was diagnosed at 2.5 with Juvenile Rheumatoid Arthritis (JRA). For almost a year before my diagnosis my parents did everything in their power to figure out what had caused me to change from their happy blossoming little girl into a girl that couldn't walk or turn her head and hurt constantly. I can only imagine my parents also had to mourn the loss of their "normal" child. I am very involved with the Arthritis Foundation and it is amazing to see all the little kids with JRA now... the medicine has advanced so much that they are able to treat the disease so much more aggressively and many of these kids will never suffer the way I did. I only hope that the same will happen with autism in the next few decades.

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  12. i can relate. while my nephew didn't experience seizures, he did change from an otherwise healthy and normal baby to one that didn't talk, one who was meticulous about the way he lined up his cars ever so perfectly, one who mumbled repetitively under his breath. my sister cried her share of tears feeling isolated and unable to connect with other parent. i cried my share of tears thinking about all the jokes other kids made that probably just flew over his head, and how he still loved his friends no matter what was going on behind his back. today he is a fully functioning teen heading to high school this year. the same quirks that made him different are the same quirks that make him exceptional. he can make basketball free throws like a rockstar! (repetition!), he produced beautiful artwork as a kid while others were still drawing stick figures. it was not an easy road for my sister, but she continues to do well, and i know your family will push through as well.

    thanks so much for sharing your story. look forward to part 2.

    rockoomph.blogspot.com
    $150 Old Navy Giveaway!
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  13. Wow. This is powerful stuff. I'm on the edge of my seat to hear part 2!

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  14. Thank you for sharing your story. I can not imagine the courage it took for you to share with so many something so personal. You have touched many by this selfless act.

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  15. what a touching story..thank you for the courage you had to share this personal story with us all.

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  16. thank you to all that read our story...your words inspire me!!

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  17. so amamazing cant wait to read the rest!

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I love reading every last one. Thanks so much for stopping by our little blog. xo.

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