“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”
A.A. Milne

Thursday, November 1, 2012

In the beginning...

As I stated with my initial post, this blog is going to be about everything.  However, for many years I have wanted to write a book about my experience as a mother of a child with Autism.  Many over the years have encouraged me to do so. It always seemed so overwhelming to write a book but yet I do have experiences that I would like to share.  A blog seems to be the perfect outlet--at least for now - for me.  So I will give you my experiences as a mom with a child who has Autism.  Also, I will only blog about Caleb once in awhile.  There is so much more to my life.  So much more.

As a disclaimer, I am just a mom.  I am not a licensed anything--(except I do hold a license to teach elementary education but that's another story and I have not taught fulltime in many years).  My experiences are mine alone and are not intended to diagnose or treat anyone anywhere.  I am merely sharing.  Take away what you will and share with others who may be in need of knowledge. Many years ago, when Caleb was first diagnosed the information age was not as available as it is now.  I longed for information and to connect with someone who was going through what I was.  I hope this helps someone out there who feels the same way.  If you are that someone reading this or know someone who needs this, please have them comment here and we can connect through private messaging.  No one should feel alone on this path of Autism.  I am always more than happy to share what I can.

Caleb was born in 1989 a normal, although large, 10 lb baby boy.  He was delivered by C section and was so big that the nurses had a betting pool as to how big he was going to be!  He was the second child and boy I had.  My first child, Zach, was normal size at birth, and so Caleb's size was totally unexpected. 

As Caleb grew, he developed quite normally.  He passed all the physical milestones.  Later after his diagnosis, I would look back and see small subtle clues to his impending Autism. He cried when I left him from a very young age.  He was only a few weeks old when I noticed this.  My mother cared for him for a few hours while I shopped and he cried from the time I left until I returned.  Once I was home, he stopped.  He was not a fussy baby at all so this behavior was perplexing.  He would do this with everyone-no matter who cared for him including his own father
 Also, although Caleb walked early. climbed early, ran early; he did not point at objects like other 9 month old babies did.  He never waved bye-bye no matter how hard we tried to teach him.  None of this really bothered my husband and I.  I was busy working and caring for 2 young children and motherhood didn't really allow me to think about small nuisances. 

When Caleb was 2 yrs old, he contracted rotovirus- a nasty disease that landed him in the hospital for four days.  It was during that time, I really began to wonder exactly what was wrong with him.  He still did not talk or make any sounds that even sounded close to words.  He did not look at you when you spoke to him.  He never came when his name was called.  As the nurses in the hospital attempted to engage him , and couldn't, I knew something was off.  But what? 

I should have taken him to a doctor at that point.  But I didn't.  I pondered his behavior.  Every morning, I awoke and prayed to God that he would speak that day.  I felt that if he just talked, all would be fine.  He never uttered a word. My husband and I waited six more months to do anything. 

An aunt of my husband's was visiting and noticed Caleb's odd behavior.  She thought we should have his hearing checked.  He must be hearing impaired. As odd as it sounds, I prayed he was just hearing impaired.  I knew if it were something more, it must be bad.

So we took him to an audiologist who performed various tests on him.  He was not hearing impaired.  As a matter of fact, the audiologist said he had extraordinary hearing and could hear sounds others couldn't!  So now what, we asked her?  She referred us to a state program that served children under 3 years old.  We contacted them and when the social worker came out, she assessed Caleb for several hours. 

Very gently the worker suggested that Caleb could possibly have autism.  She then referred us out to a pediatric neurologist. After his 5 hour assessment, he made the diagnosis.  Caleb had autism.  My life and my family's life changed that day.  I thought it was over.  I was devastated.  Little did I know....

I'm going to end my story there for now.  I will resume it in another blog.  For those of you out there that have just had your child diagnosed with autism or within the last few years, I want you to know, your life is not over.  It is not the end of anything. I know you are hurting now.  I know your grief.  I've been there.   You are going to take another path now, but it is not a bad path, just a different path.  There will be days when the path is rocky and you will want to give up.  But there will be joy too.  I promise you.  There will be joy. 

You won't understand this now but someday you will:  If I could give a magic pill to Caleb that would instantly cure his Autism, I would not give it to him.  It would change everything I have experienced and it would change who he is.  A mother with an autistic adult son told me that once when Caleb was 3 and I did not understand.  But now that Caleb is 23 , I totally understand.  And I concur!!!


  1. My step-daughter and nephew have autism; another nephew has diagnosed aspergers. My husband and brother-in-law are on the spectrum although with nor formal diagnosis. It's a challenge some days, but not the end of the world. You'll be in my prayers.


  2. As will your family Melissa. Thank you so much for sharing.:)

  3. I am so very interested in your story...nice cliff hanger. Just an FYI, you should write...I was sucked right into your blog. I can't wait to read more. :)

  4. Thank You Myndi!! I've been super busy but soon I will return to the story!!!

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  6. I have a 9 yr old daughter who has Aspergers. People do not understand why I have to wash clothes on a certain day, why we can only go to the park on ODD days, why all her clothes MUST have yellow on them, why I can't just go out whenever and leave her with a sitter, it is very complicated. I am 30 and all my friends have much younger children than I do. They all have "normal" children as I have been told time and time again. I try to explain to them that Taylor (my daughter) allows me to see things I never would have noticed. I don't want to get into to much on here because as you know it is not easy to explain. I did want you to know that I found your blog on Pinterest because of your DIY heating pad and I am very glad I did. Thank you for your story, I cannot wait to hear the rest. The end... it gives me so much hope. Right now I am not sure what I would do with that magic little pill.

  7. Amber I will be posting more. I totally understand. Please know that. I've been there. Also know - it gets better. No the autism will never leave. If they tell you there's a cure they are lying. Your child will always have certain behaviors. As I continue my story I will write about that. For years my son has had to wear a pink shirt on Sundays. I don't know why. But he knows and so what does it matter? So he wears pink on Sundays. I have four of the same exact pink shirt in his closest and that way it is always clean! Stay tuned Amber. You are not alone.

  8. Thank you for the encouraging words. Everyone I know calls me, emails me, text messages me with new "cures" they hear about all the time. They think if I hadn't given her the shots she got as a baby she wouldn't be dealing with this, they think if I take gluten out of her diet everything will change, I know better. I know that this is the way God intended her to be, I know that a celebrity (Jenny McCarthy) spewing lies just makes things more confusing for parents with newly diagnosed kids, and I know that I am a stronger person and a better mother because I have Taylor. Of course, today was a good day as me again tomorrow and my answer might be different :)

    1. Amber when Caleb was young people were forever telling me about new cures. They are truly trying to help. I even tried some of them. Did the gluten diet, the cave man diet, even had him injected with some "cure" twice when he was 12. Put him on different meds. Tried all sorts of different "therapies". ABA does work. That is the ONLY one that works. At least for Caleb. And it is not a cure. You ARE a strong person and mother and just how far reaching that strength will take you, you have no idea!!! Yes, some days are good, some are bad. But someday you will realize Taylor is just Taylor. And it is what it is. Enjoy the roller coaster! Like I said I'll post more here soon. Life just keeps getting in the way!