Saturday, June 30

today was hard

*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...*

today was hard.

today, i saw her autism. a lot. i saw the anxiety in her eyes when i tried to transition her quickly. i saw the way she stands outside the play group, looking in, and wondering how to get there. i saw her meltdowns when things didn't go as planned. i saw her obsession with counting things get in the way of actually interacting.

and i also saw my shortcomings. i saw myself rushing her to bed and picking a fight instead of helping her the way she needs. i saw myself yell at her for reactions that she probably can't help. i saw myself changing plans without telling her because it was the easy thing for me to do. i saw myself ignoring matthias because all of my energy was focused on her.

but i also saw grace. i saw the way she settles herself down when i give her the space. i saw the way she talks through hard situations and articulates the particular needs she has in her head. i saw the way she explained to me what she needed and told me that she forgives me for yelling. i saw the way matthias is resilient and fits his his life into ours when we need him to. i saw how she loves to play with him and how he loves her back. i saw a glimpse of how God must feel about me every single day and i saw a lot of the grace and love that he gives me despite what i deserve.

today was hard. but it's over. and we survived. maybe by the skin of our teeth, but we survived. and now we have tomorrow. a chance to do better, a chance to learn, a chance to continue down this road. a chance for me to continue to see her autism and my shortcomings and His grace. so thank God for tomorrow. 

Friday, June 29

He knows.

*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...*


i really love the moments when i realize that God knows what He's doing and has things worked out. i also love the moments that He chooses to reveal a little piece of that today.

today i was at work and it was a less than great day. lots of drama that wasn't my fault but that i was getting the butt of. and i was done with it all, ready to go home, ready to not deal with anything. and then i got a phone call from the director of the pre-school at easter seals. a few days ago, i talked to my boss about hiba and she was great and offered to help any way she could. i mentioned that we were thinking of trying to move hiba to easter seals from public pre-k in the fall, but i honestly wasn't too hopeful about it, since i knew there was a waiting list. but my boss called the director and told her some things in our situation had changed and we wanted to know if there was room for hiba.

so, fast forward back to today. the way that the waiting list works is it is not really a waiting list, but more of an "interested parent list" and when a spot opens up, it basically goes to whoever calls at the right moment. which this time, happened to be hiba. shortly after my boss talked to her, the director got a call from another parent of a 4-year-old pulling their child off the list. so a spot opened up for hiba. which she called to tell me. she also went on to tell me she would be happy to talk to the therapy department and get hiba signed up for o.t. and speech pragmatics. she may be able to start these therapies this summer, but definitely by august. the teacher that hiba will have in the fall is spending the summer going through a class on teaching kids with autism and strategies to use in the class room. the preschool is integrated so she will not notice that she is "different", but the teachers are all trained to be aware of individual needs and work really hard to help. and, it's literally right below my office. it's pretty much the best situation that we could think of right now.

and then i started thinking back. in november, hiba had her initial evaluation at the dennis center. then she started therapy to help with transitions and anxiety. and then they suggested an o.t. evaluation and a full team evaluation. i was a little overwhelmed and started looking for a place that did o.t. evals that our insurance would pay for. and the only place that i had heard of that did pediatric o.t. was easter seals. so i got hiba an evaluation there. and while i was browsing around on their website, i thought i would look at job openings. and there was one that looked interesting, but i didn't think i would get it. but i applied anyway, and i did get it. and hiba continued therapy and the full team evaluation got closer and i started making connections. and then we got the diagnosis and i have a great team of co-workers around me willing to help out and help us figure this out. i work in a field that is full of information that will be helpful to us, both now and in the future.  before i got the job at easter seals, i applied for several others. i didn't even get to interview for any. jobs i knew i would be good at. jobs i thought i was plenty qualified for. but now i see that God had a plan. he knew where we would be on may 31 and where i needed to be to make things work well for our family. He knew. and He still knows. i don't know what next year will be like. i don't know what hiba will be like in five years. i don't know the best decisions to make for her between now and then. but He does. and it's so great to be reminded of that all just the right time. 

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. 

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. 

Tuesday, June 26


jason and i got away this weekend. we went to houston to watch a USA v. italy rugby game. it was a fun time, good to get away, good to get a break, and - despite the fact that houston may be the worst place to go for a weekend in the middle of summer - not a bad time.

national anthem 

action shot!

celebrating the US try

setting up for the conversion kick

jason and pari, one of his teammates from Palestine who now lives in houston. so fun to see him!

Thursday, June 21



storm clouds and sprinkles. 

rock climbing. 

Water. Smiles.