Friday, October 10, 2014

When Can I Give Up?

Let me preface this by saying that I won't give up. My loved ones won't let me give up. I can't let myself give up. But I want to. More and more everyday.

But after how many tantrums do we say this isn't working any more? After how much time and money do say that we just can't do it anymore? Then I think about how if James ever did understand everything, what would I say to him when he asked me why I gave up. Why I gave up on him.

I think about my situation from an outside point of view: I'm 29, I've been living in my in-laws basement for 5, almost 6, years, I'm a college drop out with no savings (we had to spend the rest of our savings to fix my van), no assets, and no plans for the future. I even worked at McDonald's for 4 years. Pretty pathetic, but I'm saying them out loud for once instead of being ashamed. Well, that's a lie. I am ashamed of myself. And embarrassed. I could have done better. I could be better. But I'm not.

My 29th birthday, and James with no eye contact

Will I ever be a grown up? With a house, a place I can call home, a place I can give my twins to call home. Because right now I don't have a place to call home, and it's a heart wrenching feeling. I miss home.

Huge pity party here. I hate myself for entitlement. We were recently driving from Texas to Utah, and our air conditioning compressor died. A couple thousand dollars and two plane tickets later we finally got home. With every single cent spent out of our emergency money. All that we have left are the twins' savings accounts, and soon they will be gone as well.

This year we did "Walk Now For Autism Speaks"
Autism Speaks has so much information, it's a place I know I can go to
to learn and find those resources for kids like James and families like ours.

There are so many resources out there today, to help children and adults with autism and autism spectrum disorders. People in the world are so much more understanding when they find out my son has autism. I could just give up and use those resources. Then Chris and I could save our money and get a house.

I'm so lost. It seems like there's no end in sight. But I won't give up, nobody will let me. And because I don't want James to grow up and have to live in a home because I couldn't stick it out. Please God, let me be strong enough to stick it out.

We got James reevaluated last August, almost two years to the day of his diagnosis, and they told us to plan on sending James to kindergarten with a shadow (a therapist). Where am I going to find a kindergarten to send him to? Inevitably it will have to be a private school. Private school tuition plus what I have to pay the therapist to be there with James... And what about Lily? A public school without her best friend? She'll be fine though, she's a good kid, she's smart and strong and everything I need to help me have faith that James could be like her one day.

Getting James' vitals
before the evaluation began
James being reevaluated at the Meyer Center
at Texas Children's Hospital

I've been keeping my eye out for jobs but when would I work? If I work during the day, the money I would earn would go to pay whoever's babysitting. If I work at night, when am I going to sleep? Mary Kay and those other things, I'm way too shy. It's one thing to write a blog or to do a fundraiser but to be a salesperson.... What if I sold someone a defective product but then I couldn't afford to replace the product because I've already spent the money on therapy?

But if I got a job, if we weren't on the brink every pay period (twice we have fallen off the brink, thank the bank for overdraft protection) maybe I won't want to quit so much, give up so much. When kindergarten comes, maybe I'll find an office job that will be very understanding if I suddenly have to leave to rescue James (well, rescue the school from James).

First day of Pre School 2014
We try so hard, and things just keep coming and coming: our car breaks down, pre-school tuition is increased, Lily rips a hole in one of her two pairs of jeans. I'd like to think that we are good people, and we just keep having bad luck. And me, being the dramatic me, starts getting more upset with myself because at least James has autism. What about a kid with cerebral palsy? Or a little boy with Duchenne's (Muscular Dystrophy)? I should count myself lucky because things could be so much worse. What right do I have to have a pity party? Who am I to complain--I should count myself lucky that all I have to "deal" with is autism.

One of Lily's "talents."
A picture from Lily's dance class last summer.
We can't afford for her to go this fall.

I went to Texas again, by myself, alone. I had no interaction with therapy. But I did try to interact with my kids. Every night I talked to them on the phone or I face timed with them. Not once did they say "I love you" or "I love you too" unprompted. I think once out of the ten days James tried to take the phone out of Chris' hand. And there was twice James asked when I was coming back but that's it. What kind of mom am I if my kids, my 4 year-olds, don't even miss me while I'm away? I'm right next to them every day but I have so much, so much to learn, so much to do... I want to laugh and giggle and tickle, not earn a PhD in ABA.

If I gave up I could focus more on them.

Cultivating their talents, not being too stressed to play with them. I wouldn't have to stay up late combing through therapy notes. I could finish the homemade car/road table that I started making for James three years ago.

But I won't give up. I got Photoshop Elements for my birthday last year. I'll just wait to learn how to use it. Instead I'll learn how to do Mendability (a new facet that we've added to James' therapy). And I will do it the best that I can.


Don't tell me I'm strong because I'm not. To be strong you have to choose to be. Choose to be strong and persevere. I have no choice. I do choose to do everything I have to do to the best of my ability. But I still want to give up, especially on those days that James has tantrums. Days like today.

Our little family. I may not have a house to call home but I do have these three people who give me a home.

Our Walk Now For Autism Speaks Team- Top Row, Left to Right: Megan Braithwaite, Sam Grawe, Matt Heuer. Next Row: Eden Hoffman, Sierra Braithwaite, Rebecca Grawe, Chris Heuer. Next Row: Amanda Jensen, Megan Lloyd, Ellen Grawe, Ginger Heuer. Front Row: Lily Heuer, James Heuer.