Sunday, April 15, 2012

i'm just thinking of ways to be bad

since april is autism awareness month, on saturday we participated in our local strides for autism walk. i really enjoyed it because we were able to be around so many other families like ours. 
it's been almost a year since reagan's official diagnosis. we've spent a lot of time meeting with different doctors and therapists and trying new things. but mostly we have been enjoying our family. 

best quote of the day: 
dad-"reagan, what are you thinking about?"
reagan- "i'm just thinking of ways to be bad."
he has a thing for villains. 


we started out fine:

then things quickly deteriorated:

and then i just didn't want to be involved:

also, scarlett's nemesis the chik-fil-a cow was at the walk. he is pretty scary.

this first year of "official autism" hasn't been that different from the years of "unofficial autism". we have had many highs and lows. i worry a lot about reagan. it's my hobby. 
 i worry about his inability to share everything that’s going on in his brain.  i know he has lots to tell us, but his autism hinders him from getting it out. sometimes he will just look at me and smile and i feel like he is talking to my heart with his eyes. he can't get the words out, but the occasional look with tell me that he is okay or happy or that he knows i'm there and that i'm trying to help him. i feel like i have developed a special sixth sense with him. in certain situations that we may be in, i feel like part of me can intuit what he needs or what he can't say. perhaps it's purely my projection of feelings on him, but it has really helped me be more patient and try to help a situation be something he can adapt to. i don't want to avoid certain situations, i want to meet them head on and conquer them. i appreciate people who are so patient with and reagan and me. especially me. i'm not the easiest person to be around. stress and worry are my constant companions.

if there was something i wished other people knew it would be how much i appreciate other's friendships. many people go out of their way to be our friend and to make sure that reagan feels welcome. there are plenty of people who don't and i feel bad for them for thinking that having their child around mine wouldn't be fun or a good experience. the efforts of good friends mean more to me than anything else. i wish i could find a way to reassure more kids that reagan does like them and he does want to talk to them, he just doesn't always know what to say or have the appropriate response. i am at the mercy of other people being patient with us. but he knows other kids are there and that they are paying attention to him and it makes him happy. after some events he will come home and say how much he enjoyed being with friends, even if it seems like he spent most of his time by himself or just observing other kids playing. i know that he will learn the skills necessary to improve his social skills. i just hope other people can too. 

there are some things that make me happy in a twisted way. i find odd satisfaction when other neurotypical kids have meltdowns. it makes me feel less alone in this struggle called motherhood. when i see other moms dragging their kids out of a store, i feel solidarity with them. all kids have their moments, not just autistic kids. i don't want people to look at us and think, "well he's autistic, that explains everything." sometimes i look at other kids who are throwing a fit and i think, "well, he's a brat, that explains everything." throwing a fit is not appropriate behavior, but it just happens no matter who the kid is. 
reagan is a joy. autism has been a trial and a blessing. growth comes from adversity. reagan will be stronger than most. he is sweet and kind and loves to remind us to "choose the right". he likes to remind the neighbors of that too. and i know that he has a special purpose to accomplish in this life. i'm determined to help him find success in whatever he wants to do.

scarlett has been such a wonderful blessing. they are truly best friends. she will make a difference in other kid's lives because she has learned so much patience and compassion(and bossiness). my kids are incredibly close. they love each other and they need each other.

now if i could just get reagan to not want to be a bad guy all the time.


Jessica said...

this was so beautiful. thank you for sharing your feelings, heidi. i wish we lived closer. :( perhaps one day...

Nicole Bolinger said...

You look great! And your such a great mommy! I love you called the chick fil a cow Scarlett's nemesis! awesome!

I loved all your thoughts! I miss you! Maybe I need to come up there for a quickie visit!! I have to say, autistic or not, I think these kids of this generation are going to be so strong!! The things I learn for Nora is insane!! They are already so strong at this age. Your right, Regan will be stronger than most. I can only hope Nora will stay that way! I worry about "peer" pressure with her once she gets older. UGH! ok, went kinds of random there! but I think you are an amazing, woman, and MOM! :)

Carie said...

You have such a gift for writing and I LOVED hearing your perspective on being Reagan's mom.

"I am at the mercy of other people being patient with us." I think I will remember that line for a long long time. This post has reminded me that we need to nudge our children to expand their circles to include the kids they might not think they have much in common with.

Well said, my friend. Well said.

Emily Curfew said...

Heidi, I too loved reading your thoughts on being a mom to Reagan. You can really see just from the pictures how close Scarlett and Reagan are. How wonderful life is when you have a best friend.

i wish we lived closer, I could really use another "close" friend nearby, who loves me (and my kid consequently) unconditionally.

Julie said...

Beautiful. We like Reagan. I think he's a fun kid.

Will and Natalie Giddens said...

You really do have a gift with words. Reagan has the absolute best parents in the world for him. You and Big T are really wonderful.

And thanks for making me feel better about dragging Giselle out of the library kicking and screaming. Solidarity Sister!

Marci said...

Awesome post Heidi! I related with a lot of what you said. It is soooo hard when other parents/kids don't want your kid around or write your kid off as less than a desirable friend. As for every kid having tantrums...mine NEVER do...and CERTAINLY not in public.

The Stimpson Family said...

Loved this, Heidi! I loved how you said that you are determined to help Reagan succeed in everything he can. He sure does have a wonderful mom!

Caroline said...

this is such a wonderful post! I love it! This year at school John Evan has a little boy named Colby in his class. Colby has autism and he is so sweet. All the kids in the class love him and love to be his helper! It is great!

Steph and Glen said...

I miss your family so much! Autism or no autism, Reagan is a true blessing! Hugs from the omansons in sunny Florida!

Meredith said...

Oh I loved this, Heidi!!! You are awesome.