Progress & Plateaus

There’s a video going around right now that i shared last week. I know a couple other special needs mommas shared it as well probably because it seriously just hit home so hard for so many of us. It’s about as spot on as it gets in the world of special needs. A lot of things she touched on are things we’ve recently been talking about in ABA. What our future with Haven holds, what to expect, what happens as she continues to grow, get bigger and older. There was a time when they told me my child wouldn’t talk. We actually did a brain stem hearing test because we were hoping she had hearing problems that could be helped, rather than the reality of Haven being non verbal due to her Autism diagnosis. When that came back Normal we began to learn sign language as a family. We figured that would be our life. That was our new reality. I was told Havey would never normally thrive. She would forever struggle to keep up with her peers. She would forever be violent and hard to handle. That was all our reality. Today Haven is fully verbal, we still do speech because she’s got a lot of catching up to do, but she talks. A lot. She is thriving in ABA and at a neuro typical preschool where For the most part she is able to keep up with her peers and enjoys going. All those things they told me she would never do, she is doing. Praise Jesus and our amazing doctors, therapists and neurosurgeon. But she’s also still doing a lot of the things I was told she would forever do. And some days I still struggle to come to terms with that.

Haven has autism. We feel very blessed that she’s higher functioning, but Haven will always have autism. A lot of our pain and struggles are things we will struggle with for life, no amount of therapy or ABA will cure her. Help, yes. Cure, no. We have goals, we continue to meet many of those goals but while we set them we also have to be honest with ourselves about our future and the reality of raising a child with autism. We will hit a point where Haven plateaus and that will be the best and farthest we get with some struggles. Somethings we are just going to have to deal with and make the best of. Havens going to keep growing and getting bigger and stronger. Right now she’s 1/4 of my size, I’m able to withstand her violent meltdowns, and try my best to keep herself and myself safe during them. As she grows that won’t always be the case. Right now the emotional pain is worse than the physical, but I know a day will come where those tables turn. I won’t be able to keep myself safe while trying to keep her safe, and that is a very scary future to have to look forward to.

As many of you know we’ve been in therapy now for two years. We just hit our 6 month mark at ABA and about a month ago we started in home ABA. We average about 30 hours a week right now. I thought maybe our rigid ABA schedule would be coming to an end or slowing down soon but after a talk with Havens BCBA that is not the case. We have at minimum another year and a half of ABA left, and then we will assess Haven at a school level to see if she will need an aide to go with her to school. It’s difficult to think about doing this rigorous schedule for another 2 years. It feels a bit like signing my life away, but I absolutely know it is what is best for Haven and her future and I will do whatever it takes to support and help her. We will hopefully cut some of her hours during the summer so she can enjoy being a kiddo and the extra time with her sister being home.

Haven has come a long way in ABA, there’s now a few other kiddos there that she looks forward to seeing each day. In home ABA was a bit intimidating for me but as I’ve become more comfortable with it it’s definitely been helpful and I like seeing first hand the relationship Haven has with these women she spends so much time with. Some days are easy and everything goes smooth. Some days Haven has melt down after meltdown and I’m counting down the minutes to wine o’clock and bedtime. The hard days I have to remind myself that there is a rhyme to our reason. Thanks to Havens therapists and myself we have successfully (knock on wood) potty trained Haven. Anyone that knows anything about special needs kiddos knows this is HUGE. Havens therapists took a special course on how to approach it, and in true Haven form it wasn’t working. We tweaked it a little and laid off being so intense and she started to get it. The treats definitely helped too. She’s a candy driven girl. Mia has been such a big help too In helping and cheering Havey on so she gets a reward every time too. She really plays a vital role in Havens life and success, and I try hard to recognize that any chance I get.

Some of you know I was accepted to write for a bigger blog, I am not allowed to publish the posts I write for them here but will link them so those who want to read them can. They will be a little different than my current writing as they assign me topics. I’m very nervous but excited for this opportunity to advance my writing.

Thanks for following along with our journey. As always, be the good y’all.

xoxo Taylor

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