Wednesday, June 27

the day the world changed

*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...* 

may 31, 2012.

it was so hard to get out of the house this morning. so stressful. even though we were leaving an hour later than normal. it always seems to go like that. no matter how many minutes you have, you use every single one of them. or at least i do. and i end up stressed at the end no matter what.

i dropped matthias off for his first day of preschool by himself. we had gone over it the night before. he would go to preschool, just like normal, and hiba would have a doctor appointment. he would be a big boy and go all by himself and play with friends and learn, just like normal. he did great - no crying. and hiba did great staying in the car and not getting stressed out about doing things differently. we had gone over the plan a few times though, so she was ready for it, too. plus, she loves dr. liz and going to her appointments, so she was excited. we told her she would get to meet some of dr. liz's friends and play with them so she would be ready for the appointment to go differently than her previous therapy sessions.

hiba and i drove over to ualr to pick jason up from the gym. we were a few minutes early, so i used it to play temple run on my kindle. i'm way more awesome at it on my kindle than i was on my phone. and it's easier for hiba to watch me play, which she loves to do. so i even let hiba sit in the front seat and watch. but pretty soon, jason came, so off to the dennis development center we went.

we'd been there tons before. hiba had an initial developmental assessment last november. they recommended therapy to help with transitions and stress, but didn't mention anything big. so we started therapy twice a month, then once a month, and things seemed to be going well. i learned how to deal with hiba. hiba learned how to deal with the world. we learned how to deal with each other. but our therapist still wanted to do a full team evaluation with her, because there were still concerns. little things here and there. the ways she tells stories. the things she does with her fingers when she's talking. her high level of anxiety. small things that all added up to a little concern.

so here we were. a whole day thing. more questions about how she acts. is she strubron? does she seeek friendships? does she talk to people? does she throw temper tantrums? is she upset by change? is she suck in her ways? is she aggressive? can she sit still? is she normal?

that last question wasn't really asked, but i felt like it was. and i just couldn't answer it. i don't have any other four-year-olds, so i don't know what is normal. i think some things she does is concerning, but is it? am i just paranoid? is this all in my head? jason told me not to be stressed out, there are no wrong answers. but i said he is wrong. i don't want to give her autism by checking the wrong box.

hiba was taken back for testing. intelligence, language development, social skills, play skills, emotional intelligence. jason and i got to spend a lot of time in the waiting room. i got super awesome at playing temple run. three new high scores. we played reversi, which i always almost won each time but then got distracted and made a bad move, so then i lost terribly. we watched parts of old disney movies that they had playing on the lobby t.v. i wondered what they were doing with hiba. what she was saying. what they were thinking.

and then the moment came. she was done with her testing. they were done asking us questions. they had gone through some of the results, so they just had to score the last thing they did with hiba. they said it would take about twenty minutes for them to talk to get all the results and evaluation together. it was a good forty-five minutes before they called us back. is this good or bad? i had no idea.

jason and i walked into the room. there they all were, sitting across from us, with their little notebooks, tests, assessments, evaluations, notes. with all the answers. holding hiba's future in front of them. they started talking. she has a high iq. she is super smart. she knows big words. she knows how to use language to articulate her ideas. she can give directions. she is amazing at learning and soaking up new information. she has trouble reciprocating conversations. she has trouble engaging in small talk. she is stressed out by transitions. things need to be done on her terms. she has a hard time realizing others thoughts and feelings my be different than her own.

yes, yes. i know all these things. so what? what does this mean? i ask if this is atypical.

and then it starts. they all kind of sigh. they look at the main doctor. she starts talking. she explains theory of self. the idea that others have distinct feelings and thoughts different than your own. she explains that hiba has a very high iq and is very high functioning, so she has a high individual bar to mean. she explains that even if she didn't have such a high bar, most kids develop this by age 2 1/2.

my heart starts beating faster. i know where this is going. she has asperger-like tendencies, but is too young for a diagnosis so they want to tag that on her, keep with therapy, and then evaluate in a year. right? that's what i was prepared for.

but i really had no idea.

"based on everything we've seen and done...blah blah blah...high functioning autism...blah blah blah".




the word keeps echoing in my head. it's all i can do to keep looking at them, keep nodding like i am paying attention. like what they are saying makes sense to me. i try to swallow the lump in my throat. i try not to look at jason because i don't know how i will hold it in if we make eye contact. i try to just keep nodding.

high functioning. even, highest functioning. (although i know that's not a real thing).

the good news is that she is super high functioning. her intelligence is high. she can learn. she can learn the behaviors and social cues that she is not picking up naturally. she can learn to deal with transitions. she can learn to play with others. she can learn to have reciprocal relationships. but it all has to be learned. because she has autism.

they keep saying high functioning. as if that will make it better. but it doesn't. not yet, anyway. because all those behaviors, all those difficulties she has socially, all that anxiety - that's real. and it's here to stay. she won't grow out of it. she may (and hopefully will) learn to manage it. but it's here. it's who she is. it's who we are. it's here to stay.

they hand us packets of information. they give us websites to look at. they give us sympathetic glances, pats on the back and say to call if we need anything, if they can do anything to help. we say we will. we take the information and go home. hiba falls asleep in the car on the way to get matthias. poor girl, she is so tired. i just keep looking at her. 


we're not sure what the next step is. i guess go home, read a lot, and start getting services. probably some group play therapy, probably o.t., probably continuing therapy to help with transitions, stress, etc. we're not sure what this means for hiba and how she will grow up, but we do know that she is the same girl tonight that she was this morning when she woke up. now we just know how to better help her develop, learn, and cope with life - something that all parents want to know for their kids. we know that her behaviors are a part of who she is, and now we want to help her live with the way that her precious little brain is working. 

i know that peace will come. we will learn what to do with this new part of life. we'll be overwhelmed with all of the information, but then we'll figure this out. God knows what he is doing. he gave us hiba for a reason. he made me her mommy, jason her daddy, and made her to be our little girl. she is a gift from God. she is perfect the way she is. it will be ok. autism is not the end of the world. but it is something that no parent wants to actually hear, and it'll take a while to sink in and get use do. but she's still hiba. and always will be. 


Mark Currey said...

we love you guys and we love hiba... she is perfect and she is beautiful.

The Frenchs said...

Sarah, I dont know if you remember me from Camp Barnabas, but just wanted you to know how much this post touched me. Praying for you and thankful for your honesty! Allison (Taylor) French

Mom Keena said...

Thanks for sharing your heart, and your precious Hiba. You have a beautiful perspective on who Hiba is, and you and Jason were designed perfectly to be her parents. We love you guys!

Shellah Rogers said...

I don't know if you know this, but Devin has it as well. she will be just fine. We didn't know about Devin until he was older. It's good you know now. You and Jason are awesome parents and will be just fine as well.

Hannah said...

Hiba does have the most awesome parents God could give a girl. I think of what grace you had caring for the House of Hope kids before she was even born. I learned so much about loving people by those years spent in close proximity to you and Jason.

Laura Klenda said...

God really knew what he was doing when He let you and Jason be Hiba's parents, didn't He?

The good news is, there's more resources available than ever before, and you guys got some definition early.

Sarah, I remember you and your patience with Barnabas kids while you were a high schooler. You have a way and gift with any child--I'm sure Hiba has only the best in her future.

Laura (Gray) Klenda

me said...

Oh, Sarah! I feel the pain of your mother heart. Praying that the Lord will carry you when you don't know how or can't walk. I have always loved Hiba--she is a fabulous little girl! May I encourage you by saying that by getting help now, you are sparing Hiba from so much pain in the future. I think our daughter has a similar brain wiring, but has had 21 years of learning to cope in an unhealthy way. She is just learning now what Hiba will learn as she grows. Love you!

GibAnn Berryhill said...

Thanks for sharing this - we are on your side and will support, encourage, and pray for you guys. Knowing all this is daunting certainly - you and Jason are great parents - we love you!