Hi and welcome!!! My name is Christy and I am a crazy, stressed out momma just trying to survive. This is the first in a series of blog posts about my life and experiences. Over the next several weeks I hope you will dive into these posts, connect with me, and together we can navigate the rat race we call life!
When I was pregnant the first time, I assumed there were 2 kinds of mothers that gave birth in the hospital. Those that have a healthy baby and everything goes as planned and those that have complications. For me, I had a completely healthy baby and everything went as planned.
My husband and I during my first pregnancy!
A few months after the birth of my first little nugget I realized that there aren’t just 2 kinds because I had somehow fallen into a third category. How was that even possible!?! I had done everything right! I didn’t smoke, drink, or eat any of the things on the “don’t eat” list. I took my vitamins, read all the books, went to all the appointments and did everything my doctor said to do! How on earth had I fallen into a third category!?!
I brought home a beautiful baby girl. She weighed 8 pounds 3 ounces, was 21 inches long, and she was perfect! 10 fingers, 10 toes, I could not believe I had created this tiny human! Our first little trial came when I couldn’t breastfeed. I automatically assumed it was me, I couldn’t do it, I was a terrible mom, and there was something wrong with me! Obviously!
See PERFECT, I created a perfect tiny human!
This was my first stressful, freak out mom moment. The first of many!!!! By the time my adorable, tiny human was 6 months old we knew she was different but we didn’t know why. We started at our primary care doctor. She was not concerned at all, she’s probably just a little delayed, all kids reach milestones at different times, yada yada yada….whatever. I couldn’t get it out of my head! My perfect little girl didn’t look at me, she didn’t pay attention to people at all. She had no interest in reaching for things. She literally just laid there, she was content and everything was fine and she looked perfectly healthy and I should be pleased that she didn’t cry all the time and she wasn’t crawling all over my house destroying my stuff but I wasn’t because I knew something was wrong!
Still looking completely perfect! Isn’t she just adorable!
I am super fortunate because my mother in law worked with children with disabilities so she was a fantastic reference and a HUGE help. She set us up for an evaluation by First Steps so we could get some actual hard data on what was going on. When Taylor was 9 months old, a woman from First Steps came to our home and hung out with Taylor for about an hour and said she would get back to us in a few days with the results. (If you are not familiar with First Steps, I encourage you to check the Google to see if there is a First Steps program in your state, they are an amazing resource for parents if your kids are birth to 3 years old)
When the results came in, Taylor was behind in every single area tested, and she wasn’t just behind, she wasn’t even at 50% of where she should be. Basically at 9 months old, she was less than 4.5 months developmentally. Of course, I knew she was behind, I had already told everyone who would listen but I was still devastated. I would much rather have been wrong and just been known as that crazy mom with the nutso expectations but that wasn’t the case.
Nonetheless, with actual hard data in my hand, we started the million dollar workup with a million different specialists in an attempt to determine what the problem was. Fingers crossed it would be something super easy and she could take a supplement and everything would be fine. That was not the case, every doctor said all their tests came back normal. They couldn’t find a medical reason for the delays she was having. UGH!! Why!!! Throughout all these tests, we were doing physical therapy, occupational therapy, speech therapy, I was spending all my time on the floor encouraging tummy time and eye contact. Progress was snail paced! I’m a doer, I don’t have patience, we get in and get things done and that’s that. Obviously, God noticed this little quirk of mine and sent me Taylor because he knows that we just can’t live our lives like that all the time. There are things we can’t control. He’s having a laugh, I’m just trying to survive!
Taylor just shy of the 2 year old mark. Still not walking, still no words, still looking perfectly adorable, still no diagnosis.
Finally, when Taylor was 3, we received the official autism diagnosis. We didn’t need the official diagnosis to know there was something wrong. Having the diagnosis does not mean anyone can fix the problems. Autism was the result of ruling everything else out. We don’t have a real reason for what happened that caused Taylor’s development problems, we don’t have a reliable plan for what will help fix the problems. Those are the real issues with autism. It’s a complete guessing game. What worked for Jenny’s kid, won’t necessarily work for your kid. That’s why the symbol for autism is a puzzle piece. Each kid is a puzzle, you have to put the puzzle together, I have not figured my puzzle out yet and like I said earlier, I don’t wait around to do things, I do them, and then they are done!
This unfinished puzzle on my plate really stresses me out! I take life day by day and relish in the wins and learn from the losses. Over the next several weeks I will share with you about my family’s stress and anxiety related to raising a child with special needs and hopefully you can take this information and learn from it! Talk to you soon!