Exhausted


I was recently speaking with a friend of a mom who has an autistic child. We were discussing how the friend was afraid the mom was getting her child enough help. We discussed how the child was enrolled in a program but was removed because he threw something. The friend was confused because how could they remove him for throwing things? Autistics throw things when upset. I explained the people running the program should have figured out what was causing the issue. We discussed how some of the programs that are supposed to help don’t always help. The friend explained she didn’t know what to do for her friend. She was trying to offer solutions but the mom was starting to get agitated.

I said if it is anything like I went through – she is EXHAUSTED. You are trying to help your child and no one else really helps. Even well meaning people don’t help. Even the people who are supposed to help don’t. The friend told me that they found a school but it was too expensive. So I told her about the Ohio Autism Scholarship Program. The state will pay for the school – IF get all the right paperwork in place but you need to know about the program first. And no one tells you although I am surprised the school didn’t tell them but no I shouldn’t be.

It is exhausting for the parent. And it is HELL on the kid. That poor child was trying to express his feelings only way he knew how. He is 6 and non verbal, still in diapers. He doesn’t know how to express himself. He needs someone loving and caring to work with him until he learns how to express himself in a way that others can understand. And anyone with him needs to work with him to understand his needs. It takes patience and understanding.

My son is verbal but often the words don’t mean what they mean. I was trying to explain this to a friend of mine the other day. He gets a phrase stuck in his head. Scripts that he has taught himself that might be right but not really right. For example last night at 3 AM he comes to me and wakes me up “I can’t sleep”. I thought “so?” He often can’t sleep at night. We gave up on trying to always keep a regular schedule with him. Getting him to sleep at night required tons of meds and lots of pressure and fighting and drama and just not worth it. Maybe some day and he does go longer stretches now of sleeping at night. He wants to sleep at night now so he really is trying. So I thought that is why he was informing me. So I said “it’s okay, go play your game”. He said “no, it’s the pillow”. Okay so I get up and solve the pillow. But I know not that long ago he would have became frustrated that I didn’t know what was wrong or what he needed. It requires detective work sometimes. And note to self when awaken at 3 AM I should say “what is wrong” as similar discussions have occurred in last couple months.

He needs help in middle of night comes out as “I can’t sleep”. It is true he can’t sleep but there is a reason and really he is asking for help. A couple of weeks ago it was an upset stomach. That was a rough night. He was on the verge of a meltdown and was kicking the bed. He did not lash out at me though. I sat at end of bed out of reach because he has lashed out at me in the past. Not always intentionally but I have learned to stay out of reach as best as I can during a meltdown. He kind of threw himself at me but the way he did it i stayed where i was. I could feel the gentleness, the helplessness, not anger. I knew i was safe. He actually put his head in my lap and wanted me to soothe him. We worked through it & mom of the year I gave him Coke to soothe his stomach – it worked 🙂

So when an autistic child throws something they are really saying they need help with something. Sometimes they can’t control themselves. If you are the caregiver it is your responsibility to figure out what that is. As I told the friend my son used to throw things. He used to throw things at me even. I have broken doors, holes in walls, and indestructible cases on iPads & iPhones. He doesn’t throw things as often but when he gets upset it can happen. It has taken years of him working on his control. We work on understanding what he needs. We work with him. We know we have to work within his limitations. But his limitations change over time and we work within them however they change.

If you are exhausted don’t give up. Love your child, work with them and keep going.

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Comments

  1. Is there an advocacy group that could help. When my daughter needed to be placed in autism education, CAUSE helped us. (Citizens Alliance to Uphold Special Education). Apparently, they are a Michigan Group. But is there something like it in Ohio?

  2. Lord, did I ever need to read this post today. She’s not alone either. 🙂

    Signed- well intentioned mom that gets exhausted.

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