This is probably going to sound strange, or even conceited, and I swear I don't mean it to be.
But there are times that I honestly don't believe that all mothers are not like I am.
I don't mean that I'm great - I don't mean that. I just mean...
Well, let me give you an example.
I have a sister. Her son has autism too. He is very different from Chelsea, like all kids with ASD are. She also has a middle son with some needs. They are scattered; he has some anxiety, he has ADD, he also lives in a shitty environment that does nothing to alleviate his symptoms but you didn't hear that from me.
Anyway, my sister called me because her middle son just received a copy of his IEP. In this IEP, the recommendation was for her son to receive 30 minutes a MONTH (yes, a MONTH) of Occupational Therapy (OT). This is a child who cannot hold a pencil in an appropriate way and has horrible handwriting.
My sister lives in the Mountain Ghetto and her school district is shit. Resources are always stretched thin but this is beyond that.
I got into my "mode". This usually leaves me sounding very angry, and there's anger in it. It's not really directed at anyone, it's just anger at the situation and a powerful resolve.
"Debbie," I said to my sister, "you can't accept that. It's not appropriate for him."
"I know," she said, sighing loudly. "But I can't deal with another fight and I don't know what to say."
I told her to get a pen and I started to give her the language.
This child is not using a pencil in an age-appropriate way. His current grasp is immature. A pencil grip is a modification, but a 30 minute monthly evaluation does not provide treatment to address this educational issue. I request, at minimum, 30 minutes of weekly OT to address this concern.
"I just can't take it," she admitted. "I can't keep fighting these fights. My youngest is supposed to go into the school district, and I can't deal with it. I just want to crawl under the covers and never come out."
I got kinda angry at that. I admit it; I went off on a bit of a tirade, even as I struggled to understand where she was coming from.
"Debbie, you CAN'T crawl under the covers," I started. "I know you may feel you want to. Hell, I want to sometimes. I know how hard it is. I hate it. I hate having to fight all of the time. But you have to. You have to keep going. Your sons need you. They can't ask for what they need themselves. If you don't do it, who will?"
I get the fatigue. I get the frustration. I get the worry.* I GET IT. But you can't give up. How can you give up? If I give up, then Joshua won't get what he needs to be successful. Chelsea won't either. If I give up, if I stop fighting for them - what will their futures look like? I CAN'T! I may want to, just as I used to want to leave Chelsea in her crib all day long and swallow a bottle of Xanax, but I couldn't. I just couldn't, and I can't now. They may fail, but *I can't fail them.
My sister and I are cut from the same cloth, grown from the same DNA, but we don't share our views of this.
I have an IEP meeting in a week for Chelsea. I've been dealing with this situation since the END OF OCTOBER. All I want, all I have EVER wanted, is to have Chelsea's toilet training goal included in her IEP. That's all I want. In less than a week, I have to meet with a bitchy lady who has, till now, refused to do this. She has a master's degree and has been in this industry a long time. I don't know all there is to know about special education law. I don't have a master's degree. I'm just a mom. And I have to stare her down and tell her that this goal MUST BE IN CHELSEA'S IEP.
Should I really have to deal with this? Should I really have to expend energy researching the bullshit I'll have to research for THIS? For one silly stupid goal to be put in my daughter's IEP?
REALLY?????????
I shouldn't! NO I SHOULDN'T! This should be a no-fucking-brainer but it isn't. I have to fight. It won't be the last fight.
What choices do I have though?
Just throw my hands in the air and say "oh well"? Leave my kids to twist in the wind? Chelsea didn't ask to be born and Joshua didn't ask to be adopted. I MADE THEM be in my life. Okay, so maybe I am pretty confident that I would have been just as happy without kids. I concede that. But you know what? Tough tittie, I made them and they are here....I didn't ask for this shit but I have to deal with it.
Maybe I should be more joyous about it. Maybe I should feel more "fulfilled" about it. I don't, but maybe I should. Either way, it's not actually about me. It's about what they deserve.
You can't afford to be "tired". You have to fight for them because they can't.
Does that mean I am perfect? Hell, Chelsea was supposed to have a follow up appointment with a doctor that is terribly hard to get into. IN THE FALL. And you know what? She ran out of her medication and then I had to call the doctor and beg for more because - you guessed it - this Super Mommy didn't ever get around to making that appointment. It's, um, February. I still don't have a follow up appointment. Working on it. Maybe tomorrow.
It's hard for me to understand how my own sister could just sit and crawl under her proverbial covers when she has kids with needs like I do.
"You're stronger than me," she says.
"I'm strong because I have to be," I tell her. "I'm not stronger because I am innately. I'm strong because I have to be."
I was strong when my boys died. But I'm not strong, I just didn't have a choice.
If you asked me five years ago if I could parent a child with autism, I would have told you to go fuck yourself and no way.
Well. Look at that. See what happens when life tosses stuff like that in your face?
And in a totally unrelated remark, and an inelegant segue...
See at the bottom? Where it says Prosebox (c) 2013?
On Open Diary, it used to be more clear, basically something like "site and design (c) Open Diary" but it didn't include user content.
That copyright better not include user content here.
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