Diary Of An Autism Mom #1

Diary Of An Autism Mom

Some of you may or may not know that I am an Autism mom. I decided a few weeks ago that I was going to start a series on my blog called A Diary of an Autism Mom. Today, is my #1 Diary of An Autism Mom entry.  I am hoping to be able to reach out to those who are also Autism moms, and just make those that read aware of Autism.


My oldest was diagnosed with classic Autism just after his 2nd birthday. I had just had our little girl a few months earlier, so things were extra crazy at our house already. As a mom at this point in my life I was on an emotional roller coaster anyways before adding the word Autism to my plate.

A little bit before our daughter was born I had our pediatrician send a referral to a speech therapist. Our little boy had a handful of words that he used at a year old, then at 18 months lost them all. He had regressed back to where he was before he had those words to communicate with. We started speech in hopes that we could get him talking more. We had an amazing speech therapist. She loved Ian and loved working with him. My husband and I were still concerned about our Ian. Not only did Ian not talk, he would rather play on his own, had a hard time with interacting with others and didn’t have great eye contact with anyone.We thought well maybe we are reading too much into this.

Ian also was prone to having ear infections. He had half a dozen ear infections from November-January that winter. We thought we would be able to get tubes in his ears, but every time they would clear up with the antibiotics they put him on. We thought and so did his pediatrician that maybe he was not talking because all the fluid from the ear infections.

Was our child deaf? Was that why he lost his words? Off to the audiologist we went. We had Ian tested to see if he had fluid in his ears and have his hearing checked. The place was a joke. We wrestled Ian to even sit, and leave the head phones on to listen to the machine they used to test his hearing. He hated it!  How do you have a child that does not talk, and sometimes not even respond to you, tell you if they can hear something? The audiologist running the test said there was no fluid in his ears, and he could hear just fine. I’ am not sure how she was able to get an accurate reading that day. I was mad when we walked out of there to say the least.

We scheduled Ian boy’s 2 year old well child check up with a different pediatrician in the office we took him to. We needed a different opinion, so we could help Ian be able to communicate with us. We were in that office with the new doctor for not even 10 minutes. She said to us, ” Have you ever thought your child has Autism?” My heart sank and instant tears started. This was not what my husband and I wanted to hear. We knew something was wrong, but we were hoping for something they could do to help fix our little boy.

When the word Autism is mentioned in a doctors appointment for your child so many things flood your mind. The things that flooded my mind that day were:

  • My child has something wrong with them, and I never wanted this to happen.
  • My boy will never be able to do the things I dreamed he would do.
  • Will he ever be able to communicate with us.
  • Will our daughter have Autism as well.
  • What did I do wrong as a mother.
  • I should of breast fed him longer.
  • Was I eating healthy enough when I was pregnant with him.

The word Autism is the scariest thing to hear in my opinion about your child!

Ian not only had a lack of communication skills he had other skills he was lacking. They did the M-Chat test on him at his 2 year old well child appointment, and there were so many red flags for Ian that we never caught before. We were first time parents and Ian was an only child for the first 22 months of his life. As parents we didn’t really know any different. We thought Ian was just being Ian.

My one thing I want to leave you with today about being a Autism mom, dad, sister, brother, grandparent, aunt or uncle you are not alone. Never feel like you are alone in the moments of hearing your child or loved one has Autism possibly. I did a whole lot of praying and crying in the days after this appointment with my son. In fact I still cry over things that happen in my days of being a Autism mother. Even after 3 1/2 years of therapies, school and doctor appointments with my son. There are going to be happy and sad days. That love you have for your child will not change. In fact it grows even more. You watch your child struggle and succeed, and that child becomes your hero. That child will teach you what is more important in life. The little things like having a clean kitchen can wait. You can swing that child on a swing all day if it makes him happy. My son’s happiness has been my stress as a mother. All I want is our Ian to be happy!

Next time I want to talk about the steps we took to get an official diagnosis for our son.Stay tuned!

 

Resources: Savings Guide For People with Disabilities 

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  • This is the most ableist, selfish thing I’ve ever read. You’re not an “autism mom”, and to use your child’s personal identity to identify yourself is ridiculous. If you’re not an autistic mother, calling yourself an “autism mom” is as dumb as the mother of a lesbian calling herself “lesbian mom”. It’s nothing like “soccer mom” or “dance mom”, and to use it like such couldn’t be more ignorant.

    You are the “mother of an autistic child”. But also, be careful of what you say about your child on your blog, because what goes on the Internet will always be there. Your child could find it, or someone who knows your child could find it and tell them.

    Be respectful of them and don’t exploit them. Speak to the actually autistic (Twitter via #actuallyautistic) community. Instead of worrying about able-related things, teach them sign language or something. Help them communicate. Adapt to their needs and abilities instead of forcing them to adapt to your own.

    Don’t be selfish about it.

    (I am an actually autistic adult…and whatever you’re thinking, if it’s “My child is not like you”, stop — it’s disrespectful in our community and only shows ignorance. Search “I am like your child +autistic”. Immerse yourself within our community, because he was born into it. Respect it and our ways, because you were not born into it. Surround yourself with people like him so he doesn’t feel like an alien growing up. Don’t throw pity parties, because his autism is not yours and this not about you.)

    Wish you well.

  • At our son’s 2 year appointment he barely spoke the 20 words they asked us about. It wasn’t the red flag it should have been. A year later the doctor said it is “something”, but not Autism because he was engaged in the appointment and playing with his Dad. We got into the school district’s special day preschool and they diagnosed (without officially being able to diagnose) that it is high functioning Autism. The pediatrician had either learned more about the potential signs, or it was more obvious at the next appointment because she agreed.

    Early intervention is critical! And posts like this are so important because educating parents to look for the signs, trust their instincts and get second and third opinions is so helpful in the long run.

    You will be my featured post this week on #FridayFrivolity

  • Thank you so much for sharing this with us. It helps put a new perspective on it.

    Thank you for sharing this with us on the #FridayFriolity party. We hope to see you next Thursday at 9pm EST.

  • Thank you so much for linking at #ThursdayFavoriteThings! I look forward to seeing what you share every week. Please come back for #OverTheMoon on Sunday night. Don’t forget to comment your link #’s so I can be sure to visit and you get a chance to be featured! Pinned and shared.

  • Being the mom of an autistic child is very difficult. I love this post and hope to see more from you on your experiences. Congratulations! Your post was my feature pick from my Commenters at #WonderfulWednesday this week. Visit me on Tuesday evening and to see your feature and pick up your badge! All hosts choose their own features so be sure to return to my blog. I invite you to leave more links to be shared and commented upon.

  • Thank you for sharing your experience with others at #FridayFrivolity! I know that must have been so difficult, but you sound like an amazing mom. :)

  • I have no experience with Autism and I can only imagine what you must have felt in the doctor’s office that day. Your Ian is beautiful, Charlene.
    Best,
    Bibi

  • Arianne Plehandzic

    This really hit home! Thanks for sharing your story. I am so proud of you and Ian for working so hard. He is an awesome kid!!