my little fashionista

last friday night was the Fashion Event benefitting Easter Seals Arkansas. it was kind of a big deal for our family - one, because it was my first event to plan from start to finish for work, and more importantly, because hiba was modeling.

we had some models drop out a few weeks before the event, so we decided to put hiba in the show. i wasn't really sure about it, but after talking to jason we decided to just go for it. when i told hiba about it, she was less than excited at first. she started asking lots of questions about what she would have to do, how it would go, and then started getting nervous about all of the things she didn't know how to do and about how loud it would be - and then she flatly refused to be in it.

unfortunately for her, the programs had already been designed and she was in them, and i'm not one to give my co-workers extra work, so i decided to try to talk her into it.

so we spent the next week looking at pictures of fashion shows, talking about it, practicing, waving, walking, talking about it more. and then she got to go pick out her dress, which was perfect because it felt like a bathing suit.

and she came around. and she started to get really excited about it.

and then i started to get nervous. i remembered back to her preschool graduation and how she was so excited and ready for it - but how it was way too loud and overwhelming, and even though she did it, she clearly hated it. and i thought back over the last few months about how her anxiety has gone up and her ability to "just chill out" has gone down. and i crossed my fingers and hoped for the best.

and i'm so glad i did. she was absolutely wonderful. she was happy, beautiful, and loved it! the event itself was pretty amazing and hugely successful - but for me, seeing her walk out onto that runway, with a band playing and a packed room of people cheering for her and seeing her face so relaxed and happy - that was a dream come true.

autism awareness - take 2

i didn't wear blue last year. i didn't want to. i don't really know why - i think because i didn't want to be lumped in with the autism community. so i didn't wear blue.

but this year i am. because if there is one thing i have learned this year, it's that i need an autism community. i need people who get hiba, who understand her needs, her abilities, her strengths, her weaknesses, her anxiety, her joy. i need people who get me and how i rub her the wrong way and react in ways that don't help her or me, who understand the rediculolus amount of thought that goes into every single interaction with her, who understand my desire to not be a helicopter parent but my longing to make sure she is happy. i need that community.


this year has had it's ups and downs, as far as hiba goes. she transistioned really well to kindergarten. she loves her school. she has a wonderful teacher who understands a lot of what she needs, but still challengers her. she had a lot of help from the autism waiver. jason and i learned more about her needs and how to help lower her anxiety and help her live in the real world. she did a great job in her school play. she is making friends. she loves gymnastics.

and then she tested out of the autism waiver. so she doesn't have the support at the moment that she was having. and her anxiety has spiked. so has mine. that's a bad combination. she is still doing well in school, and is starting to level back out at home, but it's been kinda rough.

so here we are, autism awareness month, and i'm wearing blue. not because i think people are unaware. not because i want to make a huge statement. but because at this point, today, i want to remind myself that there is something different about hiba and her neurological functioning. she does have autism. and that's ok. and i'm ok. and she's ok. and i need to remember it's a journey that won't be over after this month is over, or if we get a good teacher, or if we get her into a good therapy program, or whatever. it's a puzzle that she, and i, will be learning to solve for the rest of her life. some days, some months, hopefully even some year - that puzzle will fit together perfectly. it'll look great. and other days, other months, maybe even other years - we just won't be able to fit the pieces together. but we will learn. we will work. we will grow. she'll be great.

  
 

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.

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.

sigh.

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.

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. 

one step closer

well, the rejection letters have started.

good news, it narrows down choices and helps us come up with a concrete plan for hiba for next year.

bad news - well, rejections sucks. and stresses me out.

we had the official referral meeting a few weeks ago to refer hiba from easter seals pre-school to the little rock school district. it was short and sweet, and actually made me feel calmer. the special ed director for the district is great and has a way of calming you and reassuring you. and, when i asked if they were considering a 504 instead of an IEP, the answer was a resounding no, that hiba will need the support of the special ed department that an IEP provides, at least during the transition. so that was reassuring to hear. one less fight. one less decision. one less thing to research.

so the school hunt goes on. we should know by the end of the month if she got into any of the magnet schools. best case scenario, she gets into one of our top two choices and we go with that. middle case scenario, she doesn't get into a magnet school, we tour other schools, apply for a transfer and get accepted. and the worst case scenario isn't really that bad. we did tour our neighborhood school and it wasn't as bad as i thought it would be. there was one teacher that jason and i loved and think would be great for hiba. the lady from the school district spoke highly of the staff at the school and their ability and willingness to work with students who need different accommodations. so, it should be ok. and i keep saying that the worst case scenario is actually that i end up home-schooling her - so then ANY school doesn't look so bad.

so we keep waiting.

in the meantime, hiba is doing pretty well. she finally has a consistent teacher in her class, who is wonderful and does a great job with hiba, so that has continued to help her general level of anxiety go down. we've got a reward system and schedule system at home to use when needed, which has eliminated much yelling and tears, especially on school mornings. we've had several OT sessions to help with sensory issues and figure out ways to address those at home, which have helped my sanity a ton when hiba is literally bouncing off the walls. recently, i've seen bits and pieces of heightened anxiety, difficultly with transitions, and ridged behaviors come back into play - which leads to meltdowns like the old days - but they are still few and much further between. hiba is learning how to handle them and calm herself down, and i'm learning to remember that her brain works differently and it's not a personal attack on me. we're learning. taking a day at a time, and right now, most of those days are good.

some days....

yesterday, i got a call from Arkansas Children's because we have registered as interested in any autism research.

last week, hiba started OT.

a few days ago, we got a letter from the preschool about the transition process to kindergarten.

i put chew necklaces and sensory toys on hiba's christmas list.

i have found myself constantly looking for sensory outlets for hiba at home in the evenings so she can calm herself down.

*sigh*

i know she is doing great right now. i know she has calmed down a lot this year and is learning how to deal with transitions, noise, sensory issues, etc. i know that having autism is not the end of the world for her. i know all of the things above are good things, ways to help her. but they are still reminders. reminders that this is forever. reminders that this is something we will be helping her with for a long time. reminders that there are things that she needs help with.

most of the time, that is fine. most of the time, it is just life and not a big deal. most of the time, i am ok with the idea that hiba has been labeled as having these issues and that the label is helping her. most of the time, i am ok with it all.

but other days, it makes me sad. it makes me sad to think that she has the anxiety that she does. it makes me sad that she needs help with transitions. it makes me sad that she needs OT to figure out how to get all of the sensory input she needs to be calm. it makes me sad that we need a transition meeting and IEP or 504 or whatever for kindergarten. it makes me sad that she can be a part of studies. it makes me sad for her, and honestly it makes me sad for me.

it is ok. things are going well. hiba is doing great. but it still makes me sad some days that we have to keep reminding ourselves that she is doing well, that there is something for her to "do well". some days i have to remind myself that she is hiba, perfectly and wonderfully made, and she is happy. she loves life. and i think we are all doing the right things, making helpful choices. and that makes me smile.

progress

so hiba has been great lately.

i realized the other day that i cannot even remember the last time she had a full hand-shaking-falling-to-the-ground-kicking-screaming-hyperventilating meltdown. and i really can't think of many little meltdowns that she has had recently. and that is something that i have not been able to say for a long time.

i think being at easter seals as has a lot to do with it. her day is relatively scheduled; she has plenty of time to play with friends and interact with people, but also has lots of time to be by herself and swing if she needs it; she has one-on-one time to work on being flexible with plans, following others' directions, and bending "the rules". and because of this, i think the level of anxiety that she has in life has dropped dramatically. so she still doesn't love it when we change dinner plans or she skips a bath on her bath schedule, but she is able to with little fits and low anxiety, because so much of her life is structured now.

there are still things that we are constantly working on - staying on task, not worrying about everyone else following the rules, not putting everything in her mouth - but i think that's how life is going to look for us. we will find her help where she needs it and constantly be helping her to figure out how she can best cope with living life in this chaotic world. and for right now, that is working well.

which, actually, stresses me out. because in a few short months (eek!!), we will have to make some pretty big decisions about where she will be going to school next year, what services we want for her, and all that good stuff. and from an outside perspective, she looks like she is doing great. because she is doing great. but i think it's because of the services and structure that she is constantly getting that she is doing great. take that away and i would bet a million bucks that it would be back to meltdowns and anxious eyes. so i'm just nervous about having to ask for things that it doesn't look like she needs. i'm worried that she has made so much "progress" this year that she won't get the help she needs next year. i'm worried that since she is fitting in so well with her regular class that she won't get the individualized attention that i think is helping her so much this year. i've read on other autism blogs that progress is such a double edged sword - it's great to see, but at the same time it's often because of services provided, services that could be taken away once progress is made. so while i am glad to see her doing so well, it also makes me nervous.

the good news is that hiba is at a great school right now, one that has teachers and administration who really know her and who have seen her over the months and who will be advocates for us when we transition to public school next year. they will be able to see the progress she has made and know, much better than me, how that relates to the services and how it relates to her growing and learning. i think a lot of times, i don't give her enough credit for things she can handle because i don't want to stress her out. so i'm glad that we have a good team on our side for when this transition will happen.

so for now, i'll focus on the good. hiba loves school. she talks about her friends. i see her playing with, not always just next to, peers. she loves her teachers. she thrives on the structure of her days. she is less anxious. she is getting more flexible. and those are all good things.

rules

being hiba's mom is exhausting.

i mean, i'm sure that being anyone's mom is exhausting. being matthias' mom is exhausting. but with hiba, it is extra exhausting.

one of the reasons is because of all the rules. she has rules for everything. every. little. thing. and it is really hard to follow them (not that i always do, but i try when i can) and it's exhausting to hear about them. i'm sure it's just as crazy for her, having all these rules in her head all the time. but, i think she likes it too - it gives structure to the chaos.

for example, she can't put her pink sparkly shoes on, because they have shoelaces, and whoever puts on shoes has to buckle or tie them and she can't tie them, so she can't put them on.

or, whoever raises their hand first can drive to church. and if you do not raise your hand, you do not drive.

when you play with the dollhouse, rose goes in her bedroom and boys cannot be in her bedroom because that is what it says and you cannot change it.

the bath calendar on the fridge tells you when to take a bath. if you want to take a bath a different day, you have to put it on the bath calendar.

if your peaches are touching your mashed potatoes, you cannot eat them because it is yucky and different food cannot touch each other.

when someone goes to bed, you have to let them be in bed and covered before you turn the light of. if you turn the light of too soon, they can't see their covers and then they will never be covered.

if you play hide and seek, the person seeking can't start counting until the person hiding is already hid. otherwise they won't have enough time to hide.

if she gets dressed by herself, when she comes out of her room, i have to close my eyes and then when she makes a "click" sound with her tongue, i can open them, but then i have to cover my eyes until she say "surprise!". and if i skip a step, we start over. 

and it goes on and on and on and on. there are rules about clothes, rules about food, rules about talking, rules about playing, rules about sleeping, rules about baths, rules about....well, you get the point. sometimes it's cute, sometimes it's funny, and sometimes it's just exhausting. controlling the chaos of the world is a tough thing to have to do. sometimes i can see the anxiety in her face, having to follow all the rules and having to communicate all rules to others. and other times, she loves it and i can see that the rules calm her.

a month down the road

so here we are, one month later. so here's an update on where i am currently. 

first, i am thankful. i am thankful for the love and support of friends and family. i am thankful, as i hear stories of people who have lived their life this way for years without knowing, that we do have answers. i am thankful that we such easy access to services that will help hiba and our family. i am thankful that God has a plan and that He has let me see some of it so i am not so stressed out.

and then, i'm overwhelmed. a month down this road, i am realizing that it is a loooooong road. and i am realizing that we are at the very beginning. we have filled out the paperwork. we have gotten hiba signed up for pre-school and therapies. which is a great start, but that's it - it's just a start. immediately, we've got intake meetings, plans to write, assessments to do. and that's just for this year. then we've got this first year of pre-school, therapy, groups. and then we've got next year. and the year after. and this year isn't going to fix everything for those next years. hopefully this year will help build good habits, ease anxiety, etc., etc., etc., but - this thing is forever. and a month into the journey, that is starting to really sink in.

a lot of times i feel like i'm living someone elses life. as much as i talk about this diagnosis or blog about it or whatever, anytime that i am actually doing something with it - like filling out paperwork, reading about high functioning autism, setting up therapy, making phone calls - it's like i am someone else talking about someone else. surely this is not me and my daughter, right?

oh, but it is. and that realization is getting harder to swallow as time goes on, i think. maybe it's finally just becoming real. either way, it's a very odd feeling when i am actively doing things to help hiba.  

i don't know if hiba's particularities have increased in the last month, or if i am just more aware of them. i don't know if she knows what is going on and is almost "living up to our expectations", or if i'm just more aware of the fits she throws. i don't know if she is all of a sudden a much pickier eater, or if i am just making all the wrong foods. but either way, this month has been exhausting. jason pointed out that one thing he was not prepared for as far as parenting goes is how every single thing is such a big deal. like we say to hiba or matthias "go get your shoes", and instead of just doing it, it is either really exciting or really annoying or something. just a big reaction. and everything, from the kids perspective, is really dramatic (or so it seems to us).

well, that's kind of how i have felt this month. every time i tell hiba something and she doesn't respond calmly, i cringe and get ready for a fight. every time she throws a fit about something, it's emotionally trying to me because i am trying to a) get her to stop throwing a fit, b) keep myself from throwing a fit, and c) figure out if her fit is her being a four-year-old or her being a four-year-old with high functioning autism. and i'm trying to do all those things in about 3.2 seconds. every time i try to make a plan, whether it's an outing, errands, dinner, whatever - i ask myself how this is going to go for hiba, what things do i need to think about to minimize stress for her. and that is getting so. very. exhausting.

i'm also seeing my shortcomings - a lot. and i don't say this so that people will tell me what a great mom i am or how i'm perfect for hiba or anything like that. (but you can go ahead and say those things anyway. ha.) i just have seen how short my temper is, how selfish i am with my time and my desires, how much i really want things to go my way, how i have not been as kind to hiba as i should have at times even when i thought there might be something different about her, how i don't have the energy to love both my kids as much as they should be loved, how i don't have energy to love my husband as much as he should be loved. and i know that is a bit dramatic - but, i have seen bits of all of those shortcomings over the last month, more than i have seen them in the past. i think part of it is coupled with being overwhelmed and part of it is coupled with this being a new forever, a new reality of the way our life will be. i have seen how much patience and intentionality it will take parent hiba, and frankly, some moments i just do not think i have that.

and then i've seen a lot of grace. i see how God is gracious in the amount of love he has given hiba, matthias, and jason. i see how things have and are continuing to work out for us. i see our friends loving us and loving her. i see how God gives me the strength when i need it and the rest that i need as well, as long as i remember to ask for it. last saturday was a hard day. i can't exactly put my finger on it, but it was just tough. jason was working in the afternoon and i was absolutely dreading the evening. but then, hiba, matthias, and i all took naps till about 4:30 p.m., had a great time at dinner at chick-fil-a, the kids ran around and played nicely on the play set till after 7, and then were super sweet and cooperative for baths and bedtime. and there's been a lot of times like that - where i'm just at the end of my rope and then i look up and grace is right in front of me.

as far as day to day life goes, it's really about the same as it was a month ago. the kids are still in daycare. i'm still working. jason is still working. we still go to the pool. jason still plays rugby. we still go to church. i still go out with friends. the kids still love having playdates. life just goes on. we're kind of stalled as far as services go - we have signed up for what we need and are just waiting for august to get here, which is when hiba will start at easter seals. so we haven't really started doing anything differently. in the meantime, we're just waiting and living life. looking at us from the outside, we probably don't look much different than we did on may 30. and in a lot of ways, life is just the same. hiba is still herself, we are still our family, day-to-day life goes relatively the same. i keep saying the only thing that has changed is that now we just have a little more information. but, oh. how much that "little" piece of information has made such a big difference.

tough

*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...*

sometimes i wish that hiba would just flap her arms and run in circles. that we would have to have her wear a helmet or bite herself so she would be obviously different.

because she is not obviously different. like when we are at the grocery store and the cookies are a different size than she expected them to be, so there is a meltdown. or when we are at ihop and they seat us at a table instead of the booth that we've sat in the last three times we have been there, so there is a fit. it looks like she is just being a brat. and when i try to fix it, it looks like i'm just giving in to whatever she wants. and i don't want to blame behaviors on her autism or accept negative behaviors, but when i'm in the middle of the grocery store, you bet i'm gonna do whatever i can to make it go smoothly. even if it means buying her a cookie that meets her expectations.

and it is because of her autism. but the thing is, you can't tell by looking. she talks. she doesn't spin. she doesn't hurt herself. she looks so normal. there's just a little different wiring in her brain that makes things hard sometimes. and there's no "i have high functioning autism so i might have outbursts that seem bratty but are really me just trying to process stressful information" t-shirts that i can buy her. i don't want to treat her differently and not discipline her and just give into everything that she wants. but, i don't want to stress her out and i don't want to punish her for not being able to think and process information and changes the way that i wish she would. and i don't want other moms looking at me like they know what my daughter needs and i need to just "take care of that situation".

it's hard enough adjusting to this all without having to do it in normal, everyday life. if our family could just live in a bubble for a few months, that would be great. we could come up with an action plan, we could start therapy with hiba, jason and i could adjust to a new way of thinking about her actions and reactions and we could figure out what is sin nature and what is autism and figure out how to deal with it. and we could do it without others watching.

but, obviously, that is not possible. we both work full time, so hiba is in preschool. we have to go grocery shopping. we go to church. we go out to eat. we hang out with friends. our lives cannot stop as we adjust to this. and on the outside, everything looks the same. everyone looks normal. but on the insides, we're all just a little bit different. we're all processing life through a little different lens than most of the people we are standing next to. and it's tough.

it's tough because of what our challenge is, in and of itself. figuring out what high functioning autism is is tough. figuring out how it affects hiba is tough. figuring out how it affects our family is tough. and then add on top of that figuring out how to do all of this in a public eye. not that we are some powerful family that everyone watches. thank goodness we are not celebrities. but, we do have friends. we do go places. people see us. and let's face it, people love to judge other people. (right? or am i just a really bad person? please say you're with me on this one...) so we are having to figure out how to navigate life, life that has been majorly altered with three little words, life that is never going to be the same as it was on may 30, life that is so different from what most people know. all with people watching. and all with people not knowing what is really going on. and that is tough.

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. 

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...*

6/7/12

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. 

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. 

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".

autism.

autism.

autism.

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. 

autism.

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.