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Knowing Charli - My Child with Level 3 Autism

Charli is my five year old daughter. At 18 months old, I heard heard the word “autism” for the first time in combination with Charli. I had a brand new baby, only two days old, in my arms. Completely sleep deprived I was confused by the suggestion. I had no idea what it ment. What is autism? What do you mean there is something wrong with my child? I was offended. She was perfectly healthy as far as I could tell. She could crawl, walk and run. She had an amazing giggle and was almost always content. She slept through the night like a champion her whole life up to that point. We were just there for her sisters newborn check up. Charli was the child I had prayed to have for years. I left the pediatrician with an autism pamphlet in hand including a fact sheet with “10 signs of autism to look for in your child”. That’s when the questions really began. Can she point with one finger? Does she make eye contact? Have I ever wondered if she might be deaf? 

I don’t think any new parent has a child and thinks to themselves, “You know, I really hope they have special needs”. For me it was actually always a fear because I didn’t think I would be able to handle it. I’m pretty sure anyone in my family would tell you before I had kids I was pretty selfish. I thought about it a lot during pregnancy, maybe more than a typical person. This far into our journey, I now believe years of infertility was God teaching me patience and the fear of a special needs child was always there to slowly prepare me for what was to come. I can’t fully explain it. Somehow mixed in the fear, as I began reading everything I could find about autism I suddenly had peace in my spirit that truly surpassed all understanding. I remember talking to my mom and crying telling her that I was so scared that she might have autism but also that I had this peace about it at the same time. Unfortunately, the next hard part was just waiting. There is no medical scan or blood test that can be performed to tell you if your child has autism. There are not enough qualified professionals who can give you a diagnosis and for us the waiting time between the idea that she could have it and actually getting her tested was over 16 months.  (This was partly due to me dragging my feet to schedule the appointment and the rest because the waiting list was over 12 months.) While we waited (before a diagnosis) we started her in home play therapy with a speech pathologist. With so many more questions than answers she got older the signs of autism became more noticeable. Her behavior became more disruptive and we became more informed. My husband spent that whole year in denial. There was a lot of tension about the topic in our house.

About a million more things happened between now and then. Over time we both had to accept her diagnosis. Charli has level 3 autism spectrum disorder and it has changed ever part of our lives. Where we live, where we work, what we do, what we can’t do. It has impacted our lives greatly. Making all of the appropriate adjustments was uncomfortable. She started an intense 40 plus hour a week therapy schedule an hour away from our house. We readjusted all of our priorities and knew our focus had to be on just knowing Charli. I want to know her fully. Currently, she is considered non verbal but is gaining verbal skills. I don’t know if we will ever have a traditional conversation but I am absolutely determined that I WILL KNOW HER. I will never stop trying, advocating, praying, putting in all the effort, all the work, all the hours and therapies. If I can fully know her I think it is my best chance to help her.

 Raising a special needs child is incredibly hard. I cry a lot. Like a lot. We fight so hard for the smallest victory. We fight for things your kid learned to do and you didn’t even notice. Your baby may have learned to walk holding your hand in a day and after 3 years we are still working on that skill. And it took a minute but then I realized it IS okay. Different paths, different minds, different people. It’s all good. My child, your child they are BOTH good. You have to understand that when you work so hard for the smallest victory and finally achieve it, it is beyond rewarding. Twice the work and twice the reward. If you’re not living it, you can’t really imagine what it’s like. To be honest, in some seasons, the hard times come way more often and patience has to be your best friend because it’s such a slow process. Half the time I feel defeated.  Half the time I feel like I am the lucky one.

I have wanted to share more about Charli ever since we launched the Charli print collection last year. My heart has always been to share the positive side that comes along with all the wild struggles. When I first tried to write more about Charli last year, we were in the middle of a super rough patch and it just didn’t feel “ready“. In the last year, Charli has made great progress. A huge accomplishment was getting potty trained and she is 100%. She often is slow to learn but once she knows how to do something it’s done nearly perfect. She has learned how to play and interact with her siblings. She has learned to request items using one word mands (Ex. cup, chips, eggs). She struggles with receptive language and doesn’t understand things like “yes or no” questions. Communication is very limited but we are seeing progress.

In light of news this week that Myka Stauffer, a popular Youtuber who has spent years sharing about her adoption of an autistic toddler from China, announced (in her words) that she has now “re-homed” the little boy it seemed an appropriate time to reiterate the value of the autistic community. That little boy, just like Charli has level 3 autism. When I watched her previous videos about Huxley, I felt inspired. Another mom who is struggling and still successfully parenting a child similar to mine. Watching her share about his successes and his ability to use sign language gave me hope as to what more we possibly can teach Charli. To find out now that she has “re homed” him like a pet you bought before thinking it through shook me to my core. The idea that a precious little boy has been given up by multiple families for any reason is unimaginable but to add he himself is struggling with a developmental disability and that’s the reason he was thrown away?

In my short two years as a special needs mom I’ve already seen first hand where my child has been undervalued. We have removed ourselves from 4 class settings due to ignorance of others. PUBLIC SERVICE ANNOUNCEMENT my child doesn’t speak but she hears exactly how you speak about her and to her. If you’re not a special needs parent, it’s still a great idea to educate yourself. Teach your kids about autism. Teach them to value everyone before the world teaches them the opposite. Myka has now used her platform to enforce that autistic children are throw always. Setting a precedent that if you have a special needs child you can just give them away. Almost every terrible event in history begins with someone normalizing evil. The most bizarre part is 99% of the special needs moms I know didn’t even choose this. Still we adapted and adore our kids. Myka knowingly adopted a special needs child and brought him across the world and changed her mind years later. That’s not okay.

Every child has a purpose, every child matters. I pray for Huxley that he will end up in the perfect home with a family that can help mend all the damage that’s been done.

 As for us, we will forever be grateful for our level 3 autistic child. It’s a joy to know her. It’s an honor to mother her. 

1 comment

  • Beautifully written. Poor Huxley. Charli is delightful & I love her so, so much!

    Doris Sykes

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