piston family fun

this past weekend, we went up to the lake of the ozarks for a weekend with my family. it was fun to see everyone and catch-up on life. hiba and matthias loved seeing their aunts and uncles, grammy and oscar. we had a great time swimming and boating and enjoying the pretty great weather, especially for the end of july. and - jason taught hiba how to swim! i've been trying to teach her each time we go to the pool here and she's gotten pretty comfortable in the water and loves to go under, but she just wouldn't ever actually try to swim. well, five minutes in the water with daddy and she was swimming halfway across the pool!

apparently, zuzu and uncle dan have the same size head. 

the water was perfect!

all tuckered out!

dad being hilarious, as always

captain dan

uncle nate, trying desperately to get some sun

this little girl is a fish!!

hiba discovered the comfort of bringing a pillow to sleep with in the car

talking on the phone, not knowing i was taking a picture

thing 2

some days i feel like matthias is getting overlooked in this whole life transition phase we are in. and maybe that's because it's true. so here is a post devoted solely to him.

matthias is full of smiles these days.





















he loves books.

he loves rugby.

he loves to figure things out on his own.

he is super cute.

he's a waterbug.

he is a goofball.

he loves his daddy.

he loves his mommy.

 he loves his sister.

the good thing about zuzu is that he is oblivious to most of life. i know that kids pick up on stress and changes more than we might think, but he seems to be coping fine. i have tried to be really intentional about spending time with him and doing things with him, because we are spending a lot of energy on hiba these days. and he seems to like that and be just fine. his super big smiles and squeezie hugs help a lot with the inevitable mommy guilt.

i do wonder what the next few years will be like for him. i wonder how we will explain to him that hiba thinks just a little bit differently and that things will be different for her than they are for him. expeciations will be differnet. punishments will be different. and i know that parenting more than one child should result in differences, but i just keep wondering how he will deal with all of this.

the other night, we asked the kids to clean up toys. of course, they both started whining and protesting like it was the hardest thing in the entire world. but eventually they started. matthias had a pile, and hiba had a pile. matthias finished his first and then went to help hiba. which resulted in her screaming and hitting him, taking the toy away and completely rejecting his help. he looked devastated. because he really loves helping. sometimes he is stubborn and throws fits, but when he comes around he is super caring and helpful. he saw that she was stressed and genuinely wanted to help her. but, in her head, it was her pile. it was her job. and she did not want help. jason and i split the up and had to explain to matthias that he was being very nice by offering to help, but that sometimes hiba just didn't want help so the nicest thing was actually not to help her. he looked confused. i almost cried. and then he walked out of the room and was just fine.

i know there will be bumps in his road. but right now, he seems to be taking this all in stride. i know there will be hard times explaining things to him. i know there will be things he doesn't understand. but i also know that he has a big heart and he loves people and that he will be great. because he already is.

these two and their faces

eating, silly, surprised, angry, and extra happy

so much concentration!

a-b-c, easy as 1-2-3

jason is teaching hiba to read. i absolutely love listening to them read together each night. and, not to brag or anything, but hiba is a freaking genius and catching on really fast. :-) 

sounding out words together

all the words she can read!

not to be outdone by his big sister, matthias is an avid reader as well. he does get a little confused on the words sometimes.....

but he's so darn cute while he does!

my little kiddos are growing up so fast!!

fantastic 4th!

i know, it's a bit late - but hey, that's life these days. so we had a great 4th of July. i had the day off and had a great day all planned out - free movie, lunch and swimming at the pool, come home for late naps, easy dinner, and fireworks. great plan. 

water bug

such a cute little kid

and it went great - movie, swimming, so fun. the kids were having a great day. i loved it. we even stopped at a friends' house for lunch after the movie and before the pool. 

and then...we went home after swimming and our house was 93 degrees. yes. that is hot, just in case you were wondering. 

now, i know that i am blessed to live in a house with working air conditioning. i know that whining about it not working is a first world problem. 

but.

it SUCKS. so here it is, 3 p.m., jason is working, the kids have not napped, and our ac is clearly not working. so after a minor panic attack, more than a few curse words, and a little cry, i loaded the kids up in the car to drive around. thank God that we were able to get the ac in our car fixed about a month ago. we drove around for about an hour, while the kids slept, the stopped at sonic for happy hour, and then went to a very gracious friends' house, where we crashed for the night. oh, and said friends have three kids under the age of five. and they just moved into a new house a week ago. so it was a little on the chaotic side.

matthias was almost as thrilled about sonic as i was about the fact that we needed to be at sonic

hiba was all smiles, though

jenny and i took hiba and isabelle, their daughter, to see the fireworks after the little boys were in bed. and despite the horrible temperature, long walk, the fact that it was way to late for any of us to be up, and the annoying crowds - i'm glad we went. because hiba loved it. she had never seen fireworks before, so she kept covering her ears as we were walking, saying "we are getting close! we better cover our ears!". i kept trying to explain that she will clearly know when they start (which she did), but it was super cute. 

fireworks!

 so, three days later, our ac was fixed and now we're home again and happy. it ended up just being the motor, which was a relatively cheap fix and a friend from rugby did it for the cost of beer and fried chicken.

despite the inconvience and stress that having no ac caused, i am super grateful to have it back now, and i am very thankful for the friends that let us stay with them and eat dinners at their houses while ours was too hot for me.

sponge bob is pretty captivating

so even though it didn't quite go as planned, all in all, a pretty good 4th of july. at least we made some memories that will stick for a good while.

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.