I feel like it’s been forever since I’ve written. I have quite a few pieces drafted up but have been struggling to post them. I started this blog to bring awareness and understanding to the Autism world, my sweet baby, and our struggles, but also as a therapeutic outlet for myself. It has helped me to be able to work through my own thoughts and feelings when I wasn’t sure how else to do so. We’ve been in a hard place lately and it’s a struggle to get through the days most days. Sometimes I feel like a broken record almost, the struggles have grown and evolved but I feel like at times I’m saying the same thing over and over: “this sucks, this hurts, I feel so alone, will this last forever?” For awhile I got in my own head and thought “people probably don’t want to hear it anymore Taylor, put your big girl panties on and just deal with it.” But you know what? If People don’t want to hear it, they don’t have to. No one makes them follow or read. But I’m going to keep writing and chugging through this hard time because this outlet is good for me and more importantly, it is good for Haven and the world around her. Ignorance is still so very prevalent, and knowledge is power. So I am going to keep teaching in the only way I know how, posting the good moments, and the ugly moments, and the in between moments. And you are welcomed to follow along or not if you choose.
In honor of celebrating my blogs two year anniversary as well as two years since I announced to the world publicly that Haven had been diagnosed with Autism I have decided to do a little recap and reintroduction/update of where we are now! Along with a little special news at the end 😊
Haven is getting ready to enter her second year of preschool, she will be attending three half days this year and will do another year of three day preschool next year. Haven is in a normal, mainstream school and thriving. She struggles with a couple small things but for the most part is performing at the same level as her peers. Some may remember that Haven was recommend for the special education preschool as she tested very below where she needed to be. Their recommendation was for Haven to spend 1/2 days there, five days a week. I didn’t love the program or those that ran it and denied their recommendations. That was my first IEP meeting, and I left crying. I felt so attacked and unsupported in my wants and expectations for my child. Autism or not my expectations for Haven are always set extremely high and the women in that room and their black and white testing had basically reduced my child down to a very low, poorly functioning, number. They failed to see the Haven behind those numbers. That was a month before her brain surgery, so she was mostly non verbal, but also struggling with pain and combatting issues we had no idea about which were likely causing her to not be able to function at her full capability. To this day I am still so happy with the choice I made, and that I fought for Haven. If there’s one thing I’ve learned in this journey, it’s that nothing comes easy. We as parents have to fight for our babies voices to be heard and needs to be met.
Next month marks Havens 1 year of being at the ABA center. ABA is not always my favorite thing, sometimes it’s really really hard but it has been a good thing for Haven. I’ve witnessed it work and believe the benefits outweigh the risk. The women that work with Haven daily have become like family to us, although they have a job to do they have so much love for her and our family. They come into our home daily to work with her, have given Haven her first hair cut, have cried with me during the awful ugly moments, and show continual support for not only Havens growth but our growth as a family. ABA is data based/driven and due to Havens recent issues I have had to begin charting Data at home so we can have a more accurate plan for Haven’s treatment. Lately she’s been going through a bit of a regression (not abnormal for those on the spectrum) violent outbursts multiple times a day and not just toward Mia, herself, or myself but her therapists, and our extended family members. That has never happened before so we’ve all been a bit concerned. Autism for us has been a lot of ups and downs and a lot of two steps forward and one step back. Right now we are going back. Due to her behaviors I wear clickers to keep track of how many and how frequent they are happening. Every time she punches, hits, kicks, or bites (etc) I click the clicker. There are mild days of 25 reads, and there’s extreme days of upward of 125 reads. I’ve felt the 125 days In my wounded spirit and soul in the past but to actually see it written out and validated with a number is a whole new realm of pain. I pray that we can quickly get to the root of this and happier, easier days are ahead. There is no worse feeling as a mother than watching your baby struggle. My heart just breaks for her, and all of us somedays.
Now for what I hope to be some happier news. For quite some time now I’ve wanted to start a social media outlet for just Haven and Autism. I feel like I do well at posting updates and sharing and what not but there’s so much more I would like to share but don’t since it’s my personal page and I feel like people may get sick of it. SO i have launched an Instagram dedicated strictly to Autism and Haven. It will run alongside with my blog but I’ll post more frequent, daily life updates there for anyone that may want to follow along. My hopes are to keep sharing and spreading knowledge, but also to spread encouragement for others going through this, to be able to help with resources some may not know about, to answer questions people may have, possibly review products geared towards those on the spectrum, and whatever else may come up. So if you would like to follow along, head over to IG and follow HelpingHavey ❤️
As always be the good y’all and thank you so much to those who have followed us the last two years and supported and encouraged us along the way.