Thursday, June 28

but she looks so normal....

*the following post was written a few weeks ago, at the beginning of this journey. it's taken a while to work through the information and be ready to share this part of our life. but here goes...*

so hiba has high functioning autism. what does this mean? well, that's a good questions.

what it doesn't mean:
it doesn't mean she will stop talking. it doesn't mean that she'll start spinning all the time. it doesn't mean she doesn't like being around people. it doesn't mean she has an intellectual disability. it doesn't mean she has major behavior problems. it doesn't mean she can't make friends. it doesn't mean she is a brat.

what it does mean (for hiba):
it does mean that her brian processes information differently than yours or mine (unless you also have autism. then she processes it pretty close to the same way). it does mean that she does not like sarcasm. it does mean that transitions, big or little, are hard for her. it does me that she needs to know "the plan" and what is happening next. it does mean that unexpected changes cause anxiety. it does mean that she has difficulty verbalizing frustrations right away. it does mean that she has some outbursts and meltdowns when things don't go the way she thinks they should go. it does mean she talks really loudly a lot of times. it does me that she has some sensory issues. it does mean she has a hard time realizing that others have thoughts and feelings that are different than hers. it does mean she has a hard time knowing how to relate to peers her own age and how to play reciprocally with them. 

but it also means:
it means she has excellent attention to detail. it means that she has very high intellegence. it means that she soaks up information and knowledge about things that are interesting to her. it means that she is a very loyal friend. 

and outside of her autism, hiba is still smart, funny, goofy, loves music, loves to dance, loves to hug, loves to laugh, loves people, and cares so much about others. autism does not mean that those things will change. 

and honestly, we don't know exactly what it means. we know what books say. we know what websites say. we know what doctors say. but they don't know hiba. and we don't know what she will be like in a year. or five years. or even next week. we do know that therapy will be helpful in helping her learn social behaviors, help her cope with transitions and learn to be flexible, work on sensory integration, and help with anxiety. early intervention is key and we've started this early in her life. so maybe autism won't be a huge factor. but maybe it will be. but either way, hiba is hiba. and always will be. 

4 comments:

GibAnn Berryhill said...

These are great things to know - I'm glad you posted them because that helps "us" understand. I personally always like to know things ... the more I know the better I seem to operate,function.... Well, here, you guys know some stuff and you don't know other stuff, yep. I know that God's given you and Jason what you need and will continue to give you what you need to manage each day. This may seem a bit off and not exactly hit the mark, but it's so important to maintain a good sense of humor through this: with my mom's dementia, when she lived with us, we just decided that we had to laugh about particular behaviors and moments...or we would always be sad about it and fixated on ....anyway - you can throw that out if you don't like it. Love you guys!
--GibAnn

Kimberly said...

Just caught up. I so wish bracing yourself for the journey would somehow make the news less shocking, allow it to settle in a little quicker, a bit more gently. Even the seemingly little adjustments, like learning to fight the natural tendency toward sarcasm, are going to require a lot of mindfulness and intentionality. Prayers are with y'all friend. And I need to buy you a drink.

joshjulieblog said...

Just wanted to let you know that we're praying for you guys... Praying for an abundance of peace, strength, and hope.

Raysha K said...

"But she looks so normal" what an interesting title choice because I think that's what anyone who reads this would instantly think...then deny they ever thought that. I've had a few opportunities to play with and observe Hiba and you're right; she is high functioning. Please don't overwhelm yourself with research, statistics, books, and such because none of those things were written about Hiba. Maybe a child like Hiba, but not Hiba. You've been able to parent her this long and it was through your unique parenting style that you and Jason have created such a well adjusted little girl. Don't sell yourself short and think you have to change your parenting style completely because quite frankly, you guys are doing an amazing job with your children. I'm sending hugs and love your way and special prayers for you and Jason.