The Uphill Battle of Being a Caregiver

img_6835I cried on my way to work this morning. Not because I was sad.  I cried because being Cooper’s mom turns me into someone I don’t like. I feel trapped. And alone. And so utterly overwhelmed. And like I need to make threats to make his life easier.

I don’t ever feel like I’m doing enough. Or the right thing.

The special education system is a constant uphill fight with a 200 lb pack on your back and no food or water. Nothing comes easy. Not one part of it. And I feel like an animal that has been caged into a corner to protect its kid and I need to fight my way out.

Dramatic? Maybe. But it’s the truth. Not one change or decision in Cooper’s special education life has come easy. Every part is 23 phone calls, 17 emails, 5 people, a dozen dead ends, and then picking yourself up and starting over.

This is the part of being a caregiver that is the hardest. Fighting for services. Fighting for equal and fair rights. Fighting for a sense of normalcy.

And it’s not always the people. We have dozens of people in Cooper’s life that are amazing. They are working to help him and give him the best options around. I think it’s more the system. The system is broken.

So what happened.

Cooper’s bus driver pulled up this morning and greeted us with a smile. He is the nicest man ever. He told me that Cooper still doesn’t have a ride home. He’s like, ‘I can take him. I’ve asked the officer every day if I should bring Cooper home and I get no response.’ He’s like, ‘I obviously won’t leave him but you should call in and see what’s going on.’

This came after Cooper woke me up at 4:45 am. And after I had a standoff with Sawyer over his breakfast that involved a time out, a thrown remote and a brotherly brawl.  And after I got Cooper dressed for his school pictures knowing that he probably won’t take one. And won’t be in the year book. And after I wrestled Cooper’s kindle out of his strong, sticky hands and after he gave me a kick to the stomach so on point it took my breath away. And after we waited in the front yard for the bus for 12 minutes because it was late. And no one on this earth will ever understand what a bus being late does to an autistic kid.

So, when the bus driver told me that Cooper STILL didn’t have a ride home after I’ve made 7 phone calls and sent 3 emails, and filled out a form, all starting two weeks ago, I knew I was going to lose my shit.

I piled Sawyer in the car, put a movie on, and made the call. And was promptly transferred 3 times after explaining the situation 3 times. And I was friendly all three time. I know that being nice and sweet will get me farther than being a bitch. I’m not an idiot.

It just doesn’t make sense to me.

My kid, a student in the school district, needs a bus ride home. He’s not a gremlin. He doesn’t need to be levitated. Or have a limo bring him home. He needs the damn bus to bring him home on Tuesday’s and Thursdays.

Yes, I called 2 weeks ago. Yes, I called a week ago. Yes, I filled out the form. Mind you this form is only needed for special education students. Yes, the form was signed by his case worker. I didn’t even know we had a case worker at school. Yes, the form was given to his teacher. Yes, I called three times last week and yesterday. Yes, the bus driver confirmed to me that he can bring Cooper home.

Her answer, ‘we still do not have transportation home for your son ma’am.

And then I lost it. I demanded to know why this is so difficult.  I’ve been calling for 2 weeks. I’ve spoke to a dozen people. I told her I’d go to the damn school board if my kid didn’t have a bus ride home today. I can’t make one more phone call about this or ask one more time. He is a kid that needs a bus. Put him on a bus.

In my head I was thinking I will go so far up the school board ladder I will be camping in the damn president’s front yard. Try me lady. I cannot leave work early again to pick up Cooper from school. I have a job. That I’m going to lose.  I just can’t. I also need to him to be on some sort of set schedule. This needs to happen. Please, please, please get my kid on a bus home. Please, help me. Wah, Wah, Wah.

And my voice broke.

As I hung up she reassured me she’d take care of it immediately.

And then I dropped Sawyer off at daycare. He clung to me and screamed and cried and said he missed me and wanted 7 more hugs and 2 kisses. His words, not mine. I felt terrible.

And I got in my truck and completely lost it.

Why? I want to know why it’s so hard for these kids. I want to know why I have to become absolutely batshit crazy to get any sort of response. It just doesn’t make sense to me.

I am a calm person. I am a problem solver. I am patient. I love my son. I love his people. So why?

I had a phone call within 30 minutes saying that Cooper’s transportation was all set up and good to go.

And that’s great. So happy. So relieved.

But why does it need to get to this level?

Why does being his mom bring me to this level of crazy that I didn’t even know was possible. With Sawyer I feel like it’s all so easy. Good things happen for him. He’s an easy going kid and he’s popular. He’s happy. He loves his daycare. He will go to kindergarten. He will play sports. He will make friends.

With Cooper it’s just different. And that’s so not fair. His life is hard. He is hard. Being his mom is hard. And the system is hard.

The system is broken for caregivers. I’m not saying I know how to fix it…but I know there needs to be a change.

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3 thoughts on “The Uphill Battle of Being a Caregiver

  1. You’re right about everything sadly.

    Well. Except one thing.

    Being sweet and kind in this broken system does not, also sadly, get you as far as kicking the door in screaming.

  2. There is (more) power in numbers. I strongly advise you to seek out other parents of autistic kids and other special needs kids in your community. Start a private FB page where you can exchange info, ask questions, find out what other folks are dealing with. Go as a group to school board meetings. A big part of the problem is that parents of kids with special needs don’t (for a variety of reasons) connect and communicate and then advocate together.

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