Monday, June 30, 2014

Siblings

I have been meaning to do a post addressing the siblings of autistic kiddos for quite some time but I already know this post will not be the one I had originally intended to write.

Being the youngest of six children, I pretty much had my mother to myself growing up. Although she worked full time,after work we would often go out to eat somewhere, just me and her. My father could never find work where we lived and he was gone to what I thought were exotic locations at the time (ie. Wyoming) and I didn't see him very much until I was older. With the closest sibling six years older than I am, it's safe to say I was a spoiled kid and had all the attention I ever needed. I can't imagine what a child would feel if their mom worked, went to school and had another child that needed near constant one to one supervision, not to mention other siblings close in age to contend with.

Although he is amazing with his younger sister, my son acts out towards his older ones quite a bit and multiple times per day does why-on-earth-would-you-do-that things to get attention. My favorite a couple weeks ago was dumping the last bit of milk I was saving for his sisters nightime cup only to claim the carton had been empty all along. My middle daughter is probably the smartest kid I know. Seriously. She's going into a "gifted" program this fall and I often find copies of Shakespeare and various selections of 19th century literature down in her bathroom that were taken from my bookshelf. Because she's so smart  she debates. She could be completely wrong about something but will not let it drop and will argue to the death. I tell her she'll make an amazing lawyer. My oldest... she's battling something head-on that usually isn't addressed until adulthood and most I know with it have a very difficult time even acknowledging it. Many also tragically succumb to it. Here is one of my babies that I wish I could do everything I could to switch places with but can't. I can only sit on the sidelines and hope there may be a chance for me to alleviate any pain felt.

Almost two weeks ago, I recognized there needed to be some change at home. I knew my kids needed more of my attention and I knew that I needed to actively charge my soul as I was utterly exhausted. After some thought I came up with this list.

(I'll spare you the trouble of trying to decipher my handwriting)
"Key to sanity and renewal?"
1. Pray/mediate. 30 day challenge?
2. Write (journal 10 min)
3. It's okay to have a messy house
4. Move all unnecessary furniture out of room
5. Let kids do more
6. Keep an Evie sleep journal/activity log
7. Make sleep routine (starting at 2000)
    i. walk around block
   ii. bath
   iii. medicine
   iv. teeth brushed/lotion pjs
   v. story
   vi. lights out in own bed with music
      (Tell Joe about schedule)
8. Do one thing the kids want to do

Can you guess how many days I followed this?

Same day I wrote this we had a family emergency I wish no family has to go through. So yeah, none. The list continues to stand vigil on the front of the fridge.

Last week our replacement sitter gave notice she could no longer help us. Not knowing this beforehand or any hint it was coming, I signed up for extra shifts. On one hand it's a good thing as due to the emergency, I had to cancel five shifts. On the other hand a bad thing since that leaves a gap from when I go to work and when my husband comes home, a way for me to travel an hour to take an exam without children, and try to figure out how I can take one child to an appointment that specifically states to leave other children at home.  I risk losing my job if I cancel any more shifts anytime soon. With things between my other children either being calm one minute to fireworks the next, they can't be home alone. Only one person has answered my ad for a replacement and I'm getting the feeling it wont work.

Today I've been thinking a lot about my role as their mother.* If you grew up in my religious culture, you'd know that mothers are responsible for nurturing and most of the emotional support and stability children need. How does my role as their mother rate when I have so much on my plate?

A few weeks ago in church, our lesson was on womanhood or something to that nature. A sister made a comment about how grateful she was that she chose to be a stay at home mom and be there for her children. How frustrated she was with a family member that he feels she missed out on educational opportunities because she chose to be a stay-at-home mom and how women in general need to be there more for their children.

I spoke up. Honestly I was going to make a comment anyway, my hand going up the same time as this other woman she just happened to be picked first. I wont repeat what I said. I'd like to think I was as diplomatic as possible, speaking on the importance of getting an education to help support the family financially.  What I didn't say was not every woman has that chose to stay home.

My husband, bless his heart, never went to college. He had an amazing union job in Seattle that paid well and had extraordinary health and dental. We move here to a job where he still has decent benefits but makes $7 per hour less. He's a hard worker, gets overtime when he can and has often lamented not going to college while he was making the money he did.

Every mothering instinct I have right now is telling me to quit my job. My children need me. I know they do. I know without a doubt in my mind things would be better if I stayed home... But I did the math. On one salary we would pay rent and maybe three monthly bills leaving car insurance, car payment, my overinflated university tuition, and Evie's tuition for her school- the reason we moved here in the first place, unpaid. (Not to mention animal food, people food, gas, car maintenance, clothes, medicines, co-pays... you get the idea).

Lately I've been thinking of one of my best friends whom I miss terribly. She's an amazing mom. Having five kids in four years (set of twins) would be enough to drive any woman crazy. Not her. (At least whenever I saw her ;) I've known her for almost nine years now and to this day she is the most giving and selfless person I know. We have the type of friendship where you could just walk into each others house unannounced, dirty dishes in sink, Lord knows what in the bathroom and you wouldn't blink an eye. I could vent and talk with her about anything anytime and know I wasn't being judged or the things I was saying, thought out or not, weren't being misconstrued in any way.

I'll admit, needing someone to watch the kids while I go to followup appointments or have unexpected needs most likely made me think of her. I  There were a lot of times, especially when Evie was first diagnosed with autism, that I needed someone to help. Evie had genetic appointments, neurology appointments, cardiology appointments, occupational therapy, speech therapy and she was always there if we couldn't find someone. I knew I could ask her for help and she wouldn't hesitate. Our other children would play and literally run amok together. The type of relationship I have with her only comes over time and a chance meeting. She also had a great way of reassuring  you, telling you things will be okay.

Like I said, this wasn't going to be like the post I intended to write.

Side note: I googled "helps for siblings of autistic children" and saw a Family Support Tool Kit link from the Autism Speaks foundation. "Oh neat!" I go to click and find this blip under the "A Siblings Guide to Autism" description,

The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. 


Funny.



*Complete and utter generalization. Not looking for any gender role argument