I have really struggled on how to start this post because I don’t want it to be a list of things “wrong” with Haven. I try very hard not to think of it that way. These are things Haven struggle with, her quirks, her differences but let me be real clear, nothing is wrong with Haven. Haven is exactly who God planned for her to be. Will we have trials? Yes. Will we have to work harder and try different things to help her meet her full potential? Absolutely. But Haven is Haven and I wouldn’t change that for the world.

Before we left for Mexico is when I really started to see things change in her and her acting ways that weren’t normal for a one year old. She used to be such a happy, smiley, loving baby but she became very unhappy and very aggressive. I brought it up to my doctors multiple times and they always brushed it off and told me to continue what I was doing and things would get better. Things were not getting better though, they were getting progressively worse. Mothers intuition is one hell of a thing. I knew there was more to it. I felt it with every inch of my being, something was off. 

I was talking to Meagan and for the first time someone got it. I didn’t sound crazy to her, she listened and she got it. She’d been through it which I can’t say about anyone else I know. I truly think God pointed me in Meagan’s direction and she pointed me in the direction I needed to go. My doctors weren’t listening and most of my family and friends weren’t either so I took matters into my own hands. That was the start of my fight for Haven. 

We started with a first steps evaluation. Haven failed 6 out of the 7 areas they tested her on. It hurt so badly to have so many therapists and medical personnel’s examine my child and find so many things not as they should be but I knew we were finally getting somewhere. We were headed in the right direction.  Her first steps assessment was sent to our Pediatrician and she decided to refer us to an Autism Specialist. The wait list was 5 months, it felt like 5 years. I felt as though I was wishing every day away to get to it. I could literally feel my heart breaking at times. It’s was all consuming to me, I just wanted to figure it all out so badly. I wanted to help Haven. I needed answers. The Autism specialist appointment was 5 hours and easily the hardest appointment to date. Lots of tears as we discussed Havens struggle, but also lots of smiles. The doctor told me more than once how beautiful my girl is and how getting her help now is the absolute best thing for her and her future. They proformed the M-CHAT-R, which is the Modified Checklist for  Autism in Toddlers. Basically its the standard screening done to detect Autism in children. She failed many things or was completely non compliant. We go back next month to redo to the M-CHAT-R and see where she’s testing now. 

As for the signs I had that led me to think something wasn’t right, Haven has a lot of the typical red flag well known Autism Characteristics.

She walks on her tippy toes a lot of the time. She doesn’t point to things of interest. She doesn’t respond to her name. She avoids eye contact to the point she will cover her eyes, shut her eyes, or bury her head If shes in an uncomfortable situation. Havens speech is delayed, she cannot communicate to us her basic needs. This is one of the most trying parts of life with Haven. When shes hungry, tired, hurt, or thirsty she cant tell us. She whines or drags us around the house until we figure out what she needs. Haven has no fears besides hating being around people. She feels very little physical pain. She shows no caution when it comes to things most kids would stray away from. This is one of the scariest parts of parenting Havey. You have to be on your A game 100% of the time with her. Her therapists warned me that the number one cause of accidental death in Autisic kids is drowning and it totally makes sense. Haven jumps straight in the water, life jacket or not, zero fear. 

The two things that were and still are the biggest red flags are Havens behavior and meltdowns. She has intense, violent meltdowns when she is angry or upset. Often times biting, kicking, hitting, hair pulling, or pinching anyone who is around her and at times herself. There is no talking her down during these times. She truly can’t help it and it just has to run its course. The other big thing is Havens anxiety and fear of people and public situations. Home is her comfort zone and taking her out in public is nerve wracking. The meltdowns are enevitable and unavoidable no matter what. We have left stores empty handed leaving full grocery carts behind because she just can’t handle it. 

Havens fear of people is getting progressively worse unfortunately. My mom, my grandmas, my sisters, my best friends, most of Matts family besides his sisters, no one can hold her, No one can touch her, it sends her into an instant panic attack. My grandma said to me the other day that it breaks her heart she can’t hold or hug her own grandbaby and it breaks my heart people have to feel this way. It’s just so hard. With kids like Havey you can’t force anything upon them, it only makes it worse. Haven has to do these things on her own terms. 

I’m hoping with our intense therapy schedule and working on her sensory diet something’s will start to improve. We have seen some positive changes and growth and somethings have definitely gotten worse. Our goal every day is to have a healthy, happy, thriving girl and with Gods guidance, our therapists, doctors, and support from our family and friends we hope to get there.

xoxo

Taylor