Thursday, August 8

this whole autism thing

so a little over a year into this journey, i think we are figuring some things out. some days, anyway.

first, i am more and more convince lately that hiba does in fact have autism. over the last year, there have been days, even weeks, where i have thought "she is fine. this is in my head. i am making it into something that is is not". and then we head into some stressful situation, change things up on her, take away supports - and she does not like it. and she doesn't like it in a way that is very different from when matthias doesn't like things. hiba's dislike of situation comes with anxiety, rules, and meltdowns that are not easy to distract her from. so i think she really does have autism.

along with that, i have learned to accept it more and i am slowly learning to react to her differently. i'm learning that she will not stop jumping and hanging on things, because she needs that sensory input, so if i don't want her to jump on the couch or hang on the counters, we need to provide her with a different way to get that input. i am learning that visual schedules work great - even when she is having a good day. so instead of trying to verbally tell her the schedule, if i show it to her, we will get off to a better start. i'm learning that she does not like the plan to change, even if the change is something she normally likes. so i need to give her the space and time to process those changes and patient with her while she does.

we are also figuring out that we need help. i think a lot of times over the last year, i have resisted going after a lot of help and services, because hiba is so high-functioning. but what i have been learning is that i need help, hiba needs help, and our family needs help. i've realized more and more that she is so much calmer and doing so great because of the resources we have used, so it's ok for me to want those in place. i have finally learned to stop emphasizing how high-functioning she is and focus on what needs to get better when i am asking for help. and i've finally realized that is ok. and the only way i'm going to survive.

hiba's occupational therapist has been a great resource. learning things about her sensory issues, how to deal with them, and what is probably not ever going to just go away was a game changer. hiba's current teacher, o.t., and me and jason really pushed for her to have an iep going into the new school year and we have it. i am still nervous about the transition, but i can't imagine how it would go without that in place.

we applied for the arkansas autism partnership waiver right before hiba's 5th birthday and she was actually accepted - which has been another game changer. she's got a one-on-one worker who comes each day, is helping us and hiba get ready for kindergarten, we have a consultant who is working on behavior issues with us. having them around and seeing how hiba thrives in a structured environment is really amazing to me. there have been days where she had a rough day at school and i figured it would be a fight to get her to do anything, but when miss denise comes, hiba is great because she knows the structure, she knows what to expect, and even if it's sitting down and doing a structured activity for 30 minutes, she loves it. it's neat to see how her little brain is working these things out and how she is learning what works well for her.

so that brings us to now. one and half weeks from kindergarten. a year down this road. i'm so thankful for all i have learned over the last year and all hiba has learned. i'm so glad for all of the supports we have in place now and really know that she will be great. i'm excited to see continued improvement down the road, even though i know there will be bumps along the way. all in all, a year in i think we are getting it, little bits at a time.

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