Wednesday, April 24

weekend round-up: birthday week!

hiba turned 5 a week ago. it is just so crazy to think that i have a 5 year-old. that seems like the age of a real person to me. you know, not a toddler, not a little kid, but an actual person. crazy.

anyway, we celebrated in style with several different parties before it was all said and done, plus little bits of celebration along the way.

it started last weekend, when my parents came down here. we had a fun, quick visit and hiba was thrilled to kick of birthday week. we weren't sure if she would love all of the celebrations that didn't happen on her actual birthday, but, like her mother, she embraced it.

popping the truck to find a new pool waiting for her!
candy land! (thanks for that, mom, by the way...)

birthday ice cream!
next up was dinner at a local mexican restaurant. we had gone a few weeks ago, and hiba saw a picture of the friend ice cream, which i told her was for birthdays. so, that was the plan. she said she wanted them to put a big hat on her and sing happy birthday. i was so thankful that is lived up to her expectations.

fried ice cream!
...and the big hat!
...and ice cream in the face! (enter nervous laughter...)
so silly!
the celebrations continued on wednesday night, when jason's family and cousins from florida came over for dinner. hiba got a new doll house from gramma and papa, which was a hit.

hiba and guin
goofy boys! matthias and malachi

hiba's party was on staurday at pinnacle mountain. i was a little (ok, a lot) nervous about planning an outdoor party in april, but it turned out perfect. the weather was georgous, the company was great, and hiba had a great time.

hiba's aunt katie made her birthday cake, and delivered it early saturday morning since she wouldn't be able to make the party. she made hiba and matthias balloon hats, which were a huge hit.

a dinosaur hat for matthias

the delicious, beautiful cake. it was amazing.

so thankful for alex's help!
the men cooking.
hiba and her cake!

singing happy birthday!

it was a great birthday week. i still can't believe she is five, about to start kindergarten. i'm glad she had a great week celebrating and i'm looking forward to what this year has ahead! 

Tuesday, April 16

i don't remember the first part of the morning - when i got up, what i ate for breakfast. i do remember it was a beautiful day. april days were usually gorgeous in beit sahour. i was off work, so i probably at some fried eggs, pita bread, hummus, and maybe some fruit. maybe some red peppers or tomatoes. i was trying to eat all the healthy things i needed. i probably sat out on our balcony, drinking nescafe, thinking that i would never have this baby.

i went for a walk in the mid morning. a long walk. my favorite grocery store was probably a mile or so from our house - but a mile up and down and up and down hills. i walked by myself, but i made sure to have my cell phone, with good reception. just in case. i walked to the store, bought something - probably chips or something like that. i clearly hadn't needed to go to the store, i just needed to walk. because i was never going to have this baby.

i did some stretches and exercises in the afternoon. i think i did jumping jacks. and squats. i probably watched some tv - i think i was into lost at that point. or maybe gossip girl. something super awesome. it didn't matter. because i had all the time in the world to watch tv, because i was never going to have this baby. 

by mid afternoon, i felt some contractions. nothing consistent. nothing strong. jason got home from work around 4 and i was about to lose it. i was 8 days past my due date. and i was never going to have this baby.

he told me we'd go out to dinner. anywhere i wanted. anywhere. so i picked a pasta restaurant in jerusalem. we hardly ever went out in jerusalem, at least not just the two of us. but pasta sounded so good. i had to iron clothes, because my only decent shirt that still fit over my massively pertruding belly was a wrinkled button-up shirt. i took a shower (which made all contractions stop all together), got dressed, dried my hair, and was ready to go eat. before we left, we measured my belly. it was the same length around as my armpit to the floor. huge. i was never going to have this baby.

we got in the car, and off we went. i don't remember which way we went out. however it was, there were no problems at the checkpoint. 6 o'clock jerusalem traffic wasn't the most fun thing to drive in. but we had time. because i was never going to have this baby.

we arrived at the restaurant, joking about what to do if my water broke at the table. israeli waitresses are, well, less than polite most of the time, so jason assured me that he'd spill some water and say it was him. i laughed. that only happens in the movies. we passed the restaurant and there were no good parking spots. i told jason that was ok, because it would be good for me to walk. because i was never going to have this baby.

it was 6:30 p.m. we were almost to a place to park. and then - pop...GUSH. contractions immediately picked up. luckily, traffic was dying down, so it didn't take too long to get back towards bethlehem. we had to go the back way, because it meant no stopping at the checkpoint, but it also meant lots of bumps, turns, and speed bumps. it hurt. i couldn't believe how much it hurt. jason was honking, driving as quickly/carefully as he could, yelling out the widow in arabic, "my wife is having a baby!".

we got to the hospital about 7:15. i could still walk and talk, so i knew it would be a while. jason got me quickly checked in and then went to go get my hospital bag i had left at home. you know, since i was never going to have this baby.

after what seemed forever, he got back. it was only about 45 minutes later. but i was hurting. this was hard. i was quite sure that i would not be able to make it. in between contractions - in the whole 30 seconds i had between them - i told jason i couldn't do this. i needed the drugs. he asked me if i was sure, and i said yes. he said great. he was on it.

the midwife came in, to see how far along i was before calling the anesthesiologist. her response literally made me lose my breath.

"it's ok. you don't need the drugs. you are about to start pushing. she's almost here".

just like that. i remember a moment of sheer panic. how was she almost here? how did God think that i was ready for this? didn't we have a little more time?

but we didn't. from there it's a blur. nurses rushing in. jason rubbing my back. inhaling laughing gas to help me breath. mixtures of arabic, french, and english. pain. exhaustion. fear. a cold wash cloth on my face. one last push.

and then.


gift from God.

her long, gangly legs.

her big, blue eyes.

her daddy's face.

my life. changed forever.

in that moment, i had no idea. no idea how much joy this girl would bring. no idea how much i could love her. no idea how much she would help jason and i  love each other. no idea how much frustration she would bring. no idea how much laughter she would add. no idea how many tears she would bring. no idea how much i would fight for her. no idea how much i would need her hugs. no idea how hard it would be to remember life before this moment.


my gift from God.

happy birthday, hiba bear!

Monday, April 15

weekend round-up: rugby domination!!

so as much as i may complain from time to time about jason playing rugby, deep down inside i think it's pretty awesome. i'm glad that he gets to play, i'm thankful for the friendships our family has made because of rugby, and i do like to brag about how awesome he is from time to time. and this season has been especially awesome. 

this weekend was the last home game of the spring season, which also happened to be the first round of playoff games. the stormers won, 86-7. yes, you read that right. they are undefeated this season and heading to naples, florida for the south championship in two weeks. 

the weather this weekend was gorgeous. one of those few weekends a year that are not too hot, not too cold. a great day for watching rugby. the kids are old enough that they can run around and play, so i actually get to hang out and watch the game, which is always a plus. it was a fun game to watch and a great way to end the home season.  


*pictures are from Razorbackfoto - go check out the rest!

Tuesday, April 9

weekend round-up: community

this weekend, i felt really blessed by our little church community. when i think about our church, and that fact that we've stuck around, it's kind of funny. to someone on the outside, our group probably doesn't make a lot of sense. but it just fits so well into our lives right now and is always a blessing to be around our r street peeps.

for about two years after we moved to little rock, i didn't feel like jason and i had a place together. he had is friends, i had mine, and we crossed over to each others sides - but we didn't have a group. and that was hard.  but somehow, without really looking, we stumbled onto r street. and for whatever reason, we stuck around. and i'm so glad we did. because now we have "our" group, we have "our" friends, a place for our family to be. if you had asked me two years ago what kind of a group i would be looking for, i don't think this would be it. (haha - sorry guys :-p) but - i am so thankful and blessed to be a part of this little community now. 

once a month, we try to do a service sunday - taking our church service somewhere and serving in some say. we've sorted clothes at a homeless shelter, we've raked leaves at a women's home, we've built wheelchair ramps. it's always a fun time and a good reminder to be doing as a community, not just being.

this last sunday, we held a church service at a nursing home here in little rock where the mother of one of our church members lives. and it was really neat. in the middle of singing "come thou fount", i looked around at our little rag-tag group and was so thankful for where we are, so thankful for these people in our lives, so thankful for the way that we have weaseled ourselves into each other lives. after leaving palestine, i was not confident that we would find another place like kinestish*, but this church family is turning out to be a pretty amazing addition to our life. it's the perfect place for our family at this point in our life.

i don't have anything really profound to say about them, other than i am thankful that they are in our life. i'm thankful for the way they love our family - me, jason, and the kids. i'm thankful for the way we love them. i'm thankful for the way we are in each others lives and business. i'm thankful that we can pray together, share communion, go out to lunch, and share a beer. i'm thankful that they have invited us into their lives and that we have invited them into ours.

real community is a great thing. and i love ours.  

super grateful for these people.
*a made up arabic word meaning "not church", which we used to describe our little group that met together, shared a meal, read the Bible, prayed together, and just did life together.

Wednesday, April 3

everyday autism

apparently, hiba got the memo that yesterday was autism awareness day. and she wanted to make sure that i was not left unaware. trust me, sweetie - i'm aware.

but, just in case i wasn't, she decided to take advantage of the day. she's been a little on the mean side to matthias lately, but i thought it was just to him. you know, sibling stuff. well, apparently she has been being mean at school a lot in the last few weeks. getting mad at her friends when they don't play by her rules. hitting when kids interrupt her or don't listen to her directions. and i know - every kid is mean at some point. kids hit. they kick. they bite. they yell. i know.

but - as hiba's teacher was telling me about how she pushed matthias on the playground and how she punched another kid during playtime (and yes. punched. her words, not mine) - i can see hiba doing it in my head. matthias and the other kid doing something to set her off. interrupting her. saying something over and over to her. not following her rules of the game. and i can see hiba's eyes glass over, her jaw clench, her body starting to shake. i can see the impulse, the rage, the need for control take over. and she snaps.

luckily, she's not very physically strong, and she usually snaps out of it just as quickly as she snaps into it. but for the first time (that i know of), she's snapping with other kids.

and it's different than when matthias gets mad. or when i see other kids get mad at her. it's the look in her eyes where she does not have control, where she is impulsively reacting to a situation and cannot pull herself out. at least not in that brief moment.


we had a long talk about it on the drive home. she knew exactly what she did. she knew exactly what she should have done. but i'm not convinced it will be any different next time.

and then we got home, ate a relatively peaceful dinner thanks to the promise of easter candy, and i fooled myself into thinking that we would have an easy night.

and then - i asked hiba to put her laundry away. that would have been ok, except i gave it to her in a laundry basket. i had folded the kids' clothes on monday night, so i took matthias' out of the basket and put them on the couch for him to put away. and sometimes - but not always, i swear. not. always. - i put hiba's on the couch too, and she puts them away from there. but, if they are already in the basket, and she can use the basket to carry all of her clothes into her room at once, and simply put the clothes from the basket to the dresser, and skip the steps of putting them from the basket onto the couch and from the couch to the dresser - why would you not just put them away from the basket?!?!

because you have autism, that's why.

hiba was not a fan of my idea. and instead of just saying, "hey mom, i usually get them off the couch" or something equally as calm and helpful, she went straight into a wailing, borderline hyperventilating meltdown, screaming at me "I WILL NEVER PUT MY CLOTHES AWAY UNTIL THEY ARE ON THE COUCH!!!!!!". and it just spiraled out of control from there, until she was screaming and yelling and i adamantly told her she could not come out of her room until her clothes were put away and if she tried to come out, she didn't get to play a game on my phone before bed.

as i closed the door and walked away, all of the guilt and doubt flooded over me. why am i picking these fights? why do i care if she puts her clothes away from the basket or the couch? am i really trying to teach her to cope with change or just trying to win? is she just throwing a fit because she thinks i'll cave or is this really a big deal to her? doubt after doubt, guilt for wondering if i listened enough, guilt because i had to close the door and walk away, guilt because i probably spoke too harshly before i left. doubt that i am doing the right thing - in this moment, and in general.

it ended up ok. after about five minutes, she stopped throwing her fit and put away her clothes. i had mentioned her social story on being flexible in the midst of trying to convince her to do things my way (yes, i did see the irony, even as the words were coming out of my mouth), so as soon as i opened the door she asked, with a shaky voice and tears in her eyes, "mom, can you read me my book about being flexible?". and as we sat on the floor of her bedroom reading it, she mouthed every word, as if she was trying to convince herself of it. "things can change, and that is ok for me".

i talked to jason about it this morning, still wondering if i did the right thing and doubtful that i handled it right. he pointed out that what we want to teach her is how to deal with her rigid behavior, how to interact with the world in a positive way, how to stay calm in situations that stress her out. so the point isn't to make her do things differently just for the sake of doing them differently. rather, the point is to teach her how to react appropriately. teach her how to calmly explain that it stresses her out to have the laundry in the basket and she would like it on the couch. teach her to take a deep breath calm down when that impulsive stress comes on to her.

so that's what autism is in our house. at least for today. finding a balance between chaos and structure. constantly asking which battles to pick and why we are picking them. teaching that it's ok to want things a certain way, but it's not ok to scream. teaching appropriate ways to interact with friends, even when you don't want to.

and in a way, that's what not-autism looks like in our house as well. we are going through all of those same lessons with matthias. but the autism adds another layer, a little complication, a few more thoughts to every move. autism adds the need to asses most daily tasks and decisions just a little more than i normally would.

that's autism, in the day to day, in our house. it doesn't look exciting, it doesn't look exotic, it doesn't look too much different than not-autism. but it's there. every day. in one little way or another. enough to keep me on my toes. enough to keep me aware.

Tuesday, April 2

autism awareness

today is world autism awareness day.

and, like my reaction to most everything, i am cynical about it.

because here is the thing. i don't think autism needs an "awareness" day or month. i think that most people are plenty aware of autism. with the latest statistics estimating that 1 in 50 school-aged children are diagnosed with something on the autism spectrum, it's hard to not be aware. i would bet a lot of money that anyone who reads this post knows someone who has autism (besides hiba. although, that would make it an easy bet for me). people are aware. 

but i don't think that people are informed. and i do think there is a big difference. you can be "aware" that 1 in 50 school aged kids have a diagnosis on the spectrum. you can be "aware" that autism affects a lot of people. but that doesn't mean that you are "informed" about what that 1 in 50 statistic means in real life or exactly how autism affects so many people.

so what i want - this month and every month to come - is for people to be more informed about autism. i want people to realize that as the diagnostic criteria becomes more broad, autism has begun to look very different. i want kids to be informed at an early age about all kinds of special needs, especially the ones that look "normal" a lot of the time. i want teachers to be more informed about teaching strategies for kids on the spectrum. i want people to understand that autism no longer fits in a box and someone doesn't have to have every symptom to fit the diagnosis.

hiba is very high functioning, as far as the diagnosis of autism goes. and for that, i truly am thankful. really, i am. but, i feel like for us, and for a lot of families with children who have aspergers or high functioning autism, we are stuck in the middle. as the diagnostic critera increases, as the medical and therapy community begin to realize that a large amount of the population have brains that process information and function differently than the neurotypical community, people like hiba become stuck. they fit the diagonisis, but don't qualify for treatments. they have the symptoms, they have the issues, but not profoundly enough to qualify as needing a lot of intervention. the criteria for diagnosis has gotten broader, but the criteria for the therapies and intervention has not. 

hiba has sensory issues. this has been "proven" by tests and assessments. but she only qualified for six OT sessions, instead of weekly or bi-weekly sessions. those sessions have been helpful and i have learned a lot. we've set some things up at home to help hiba get the sensory input that she needs. but - she doesn't qualify to get that therapy during the day, at school, on a regular basis, when it would not only be easier for us, but would also help to keep her leveled out and calmer all around. instead, our family was given information about sensory diets, given ideas about what will benefit hiba, and good-luck pat on the back.

hiba has transitional issues. this has been "proven" by tests and assessments. but, she is cognitively smart enough that she does not need to be in a self-contained classroom. in fact, she would be bored out of her mind. so she is in a normal class. her teachers are aware of her issues and help as much as possible, trying to remember to let her know in advance if the schedule is changing. even on stressful days at school, she usually makes it through the day with minimal visible stress or meltdowns. so they don't consistently use a schedule with her. and she survives and makes it through the day, and even does really well at school most days. but then she comes home and the smallest little thing turns into a big deal and a meltdown because she's already taken in all the chaos she can handle for the day.

hiba has impulse issues, i think that are more than typical for someone her age. this has been "proven" by tests and assessments. but she doesn't qualify for behavioral therapy on a regular basis. we can go see dr. liz as needed, but she doesn't "need" it every week or every day or whatever, so i just have to sit around and wait until things are getting really hard, get an appointment, get a few ideas, and then back home we go, with a list of ideas and strategies, and a good-luck pat on the back.

hiba has communication issues. this has been "proven" by tests and assessments. she has a very large vocabulary, but struggles with reciprocal conversations. she can hear and process verbal directions most of the time, but she has a difficult time with this when she is stressed out. she makes eye contact and isn't afraid of looking at people, but i've noticed more and more lately about how she doesn't do this when she is stressed. jokes make her nervous if she doesn't get them. she hates sarcasm because it makes her feel like she doesn't understand what is happening. but, she doesn't qualify for speech therapy. she is too young for social groups. and she is too high functioning for one-on-on speech therapy, even in a classroom setting. so instead of therapy, we are given ideas and things to read, we are given strategies on how to help her out, and a good-luck pat on the back.

lately, i have felt that people look at hiba, they look at us, and they see that she is high functioning. teachers, therapists, friends. they all see the high functioning side every day. they see how she is able to learn quickly. they see how she is able to cope with her anxiety some of the time. they see how she is able to play with friends. they see how she is able to talk. they see how she is able to function at a normal level most of the time.

and so they don't see autism.

they are aware of it, either because it's on the sheet of paper or because we have told them. but they are not informed about what that really means in our daily lives. they don't see her autism. 

but i do. 

i really am thankful for hiba. i really am thankful for all she can do, and all she doesn't do on a regular basis. but what i have learned this year is that autism is real, autism is here to stay, autism looks very different than it did 20 years ago, and not all of the treatment ideas and reactions, both from the general public and the medical/therapeutic community, have caught up with the diagnostic criteria. i've learned that people are aware that autism is around and prevalent, but are not informed about what it is or is not.

so on this autism awareness day, i am thankful that people are aware. i am. but i hope that if you change your profile picture, if you wear a blue t-shirt, if you click "like" on all of the pictures - don't just be aware. become informed. become informed about what autism looks like - either by reading about it or simply asking parents or individuals with autism. become informed about what it means in everyday life. become informed about how educational approaches need to change and come alongside of parents like me to figure out how to make that change. become informed about the difficulties that people with high functioning autism face, as well as the difficulties their parents face. become informed about what autism really means today.

awareness is a good first step. as a mom of a child with autism, i genuinely thank you for being aware. but now that you are aware, move forward. become informed. and then act on that information. because that is how change and help is going to come.

*Disclaimer: this is me and my thoughts. these may not be your thoughts. i am genuinely thankful for all of the attention that autism gets this month. i think that organizations like autism speaks do a lot of good work and are great advocacy organizations and great at raising awareness. if you love autism awareness month, that is great. i am glad you do. if you are wearing blue today, thank you.  if you are affected by autism and you feel differently than i do, that is just fine. i am not trying to downplay your struggles or downplay how far people have come in understanding autism. i am in no way saying that autism awareness is a bad thing, just that it shouldn't be the end game. i also want to say again that i love hiba and would not have her any other way. but that doesn't mean it's not hard day to day, and it doesn't mean that i can't be annoyed by the hard things and the way the system makes things harder. but that may be another post for another day. anyway. end rant. 

Monday, April 1

weekend round-up: aunt rachel and easter

this weekend was packed, but in a good way. it started off with my sister, rachel, getting here thursday night. it was fun to see her! i took off friday afternoon from work to hang out, and we realized that she hasn't really ever seen any of little rock besides our house and the rugby field (not that those are bad places to see). so, friday afternoon, we took advantage of the break in the rain and relatively nice weather, and headed downtown.

we walked around the river market area, then hopped on the trolley for a little ride. 

the trolley is coming!!!!!!!!!
i like these two.
 we ended up at the peabody to watch the ducks - which is only around for a short amount of time, so it was fun to see it one last time.

saturday, it was colder, rainy, and jason rugby game was cancelled, so we headed back downtown. first stop was lunch at flying fish. matthias was a fan.

next, we headed to the museum of discovery. i think rachel and i had just as much fun as the kids did - if not more.
matthias listening to his heart beat

they loved the "roller coaster"

hiba was a little unsure about the bed of nails
matthias laid on it several times. i passed.
this pretty girl loved putting on a princess parade.
so much concentration!
sunday brought easter. since our church is pretty small these days, we decided to go as a group to st. michael's episcopal church. i really enjoyed it. hiba did not. although, i do have to say, both kids were amazingly well behaved in the service. hiba was just a little annoyed that they didn't do things right - they didn't say the Lord's prayer correctly and they didn't do communion right. but, she survived, although she has adamantly

told me she is not interested in going there next week.

after the service, we met back at our house for a brunch with our church. and lastly, ended with the obligatory easter egg hunt - despite the rain and massive puddles in our back yard.
searching high and low
matthias was so excited for every egg
so there you have it. hope everyone had a wonderful weekend as well!