Today our speech therapy was canceled. We were all dressed and ready to go so I asked Caleigh if she wanted to go to the library. She said yes and off we went.
We pulled up to the library. I unloaded her wheelchair and got her all strapped in. I added the iPad, with Proloquo2Go pulled up on the screen, to our new RJ Cooper mounting arm. We've done this before. Caleigh can tell me yes or no to books that I pick up.
We rolled into the children's section and started looking at books. I picked up one about a chicken, asked Caleigh if she wanted it and that's when she lost it. Screaming at the top of her lungs. Basically flipping out. I tried to talk to her, but she couldn't hear a thing I was saying. So we turned right around and got back in the car.
Caleigh cried the whole way home. Sobbing sad cries mixed in with some 'pay attention to me' screams.
When we finally got home she screamed in my face so I put her in timeout. After 3 minutes we sat down with her iPad and I asked her why she started crying in the library. She was still huffing and puffing and her arms were still very tight from the fit.
She said "I feel sad"
I asked her why she felt sad. I asked her to spell it for me. All she could get out was "N-E"
I went back to the home screen ready to almost give up. Then she said:
"I need help"
I tried to confirm. I asked her if she felt sad that she needs help. She told me "yes."
I literally started tearing up right there.
Now this could be one of two things or both.
One being that Caleigh is like every other 3 year old who wants to do things for themselves. i.e. get dressed, tie shoes, walk without holding your hand. Independence. Every kid dips their toes in the water.
The second scenario is more heartbreaking to me. Perhaps Caleigh knows she has differences. Maybe she understands that other children don't always need the help of others to do every single task. I do know that she does understand that not everyone uses a wheelchair. I asked her. I thought I had a couple more years on that one, but I was wrong.
Caleigh's behavior lately has me leaning towards a combo of the two. Timeouts have become more frequent. Public outbursts happen once a day when out. Testing behavior is becoming more regular. There is an intelligent little girl in a body that just doesn't do what she wants it to. She's frustrated and acting out.
This afternoon we had a marathon of wills. It started because I told Caleigh not to take off her glasses. This is a constant struggle in our house. 2 seconds later they were on the floor. She literally looks at me, gets that pointer finger up there, and in moments they are on the floor. The timeout lasted for almost an hour. It looked like a scene straight from super nanny. Hysterical kid with a mom trying to not give in or end up in tears. She ripped off her glasses 5 times during the timeout and screamed, arched and did everything she possibly could do to let me know she wasn't happy. Finally she calmed down enough for me to talk with her. After timeouts Caleigh knows that she has to tell me she is sorry on her iPad, and she always tells me that she loves me, but that part isn't required. So sitting there with her iPad she says she loves me about 3 times, throws in an "I missed you" and refuses to say that she is sorry after I give her to the count of 10. So again she goes back to timeout. Repeat with the same result two more times. In the end she did tell me that she was sorry (at the count of 7) with the whimper of a child being forced into giving up the fight.
Stubborn.
The two scenarios really don't mesh well together. Independence is not something that Caleigh has right now and she knows it. Independence, in any form, is exactly what Eric and I strive for regarding Caleigh's future on a daily basis. Right now though, she is completely dependent on us. The truth is that Caleigh will need some sort of assistance the rest of her life. Sometimes... I just hate the truth.
I'm not sure where today leaves us. I think this is just the beginning. I do know that I'm going to put together a book, in the best children's language I can, about Caleigh's story. I think it's time to start educating Caleigh about her miracle life. About what makes her amazing and not just different. Other than the book and timeouts, I'm not really sure what else to do.
This whole parenting without an instruction manual stinks sometimes.
We pulled up to the library. I unloaded her wheelchair and got her all strapped in. I added the iPad, with Proloquo2Go pulled up on the screen, to our new RJ Cooper mounting arm. We've done this before. Caleigh can tell me yes or no to books that I pick up.
We rolled into the children's section and started looking at books. I picked up one about a chicken, asked Caleigh if she wanted it and that's when she lost it. Screaming at the top of her lungs. Basically flipping out. I tried to talk to her, but she couldn't hear a thing I was saying. So we turned right around and got back in the car.
Caleigh cried the whole way home. Sobbing sad cries mixed in with some 'pay attention to me' screams.
When we finally got home she screamed in my face so I put her in timeout. After 3 minutes we sat down with her iPad and I asked her why she started crying in the library. She was still huffing and puffing and her arms were still very tight from the fit.
She said "I feel sad"
I asked her why she felt sad. I asked her to spell it for me. All she could get out was "N-E"
I went back to the home screen ready to almost give up. Then she said:
"I need help"
I tried to confirm. I asked her if she felt sad that she needs help. She told me "yes."
I literally started tearing up right there.
Now this could be one of two things or both.
One being that Caleigh is like every other 3 year old who wants to do things for themselves. i.e. get dressed, tie shoes, walk without holding your hand. Independence. Every kid dips their toes in the water.
The second scenario is more heartbreaking to me. Perhaps Caleigh knows she has differences. Maybe she understands that other children don't always need the help of others to do every single task. I do know that she does understand that not everyone uses a wheelchair. I asked her. I thought I had a couple more years on that one, but I was wrong.
Caleigh's behavior lately has me leaning towards a combo of the two. Timeouts have become more frequent. Public outbursts happen once a day when out. Testing behavior is becoming more regular. There is an intelligent little girl in a body that just doesn't do what she wants it to. She's frustrated and acting out.
This afternoon we had a marathon of wills. It started because I told Caleigh not to take off her glasses. This is a constant struggle in our house. 2 seconds later they were on the floor. She literally looks at me, gets that pointer finger up there, and in moments they are on the floor. The timeout lasted for almost an hour. It looked like a scene straight from super nanny. Hysterical kid with a mom trying to not give in or end up in tears. She ripped off her glasses 5 times during the timeout and screamed, arched and did everything she possibly could do to let me know she wasn't happy. Finally she calmed down enough for me to talk with her. After timeouts Caleigh knows that she has to tell me she is sorry on her iPad, and she always tells me that she loves me, but that part isn't required. So sitting there with her iPad she says she loves me about 3 times, throws in an "I missed you" and refuses to say that she is sorry after I give her to the count of 10. So again she goes back to timeout. Repeat with the same result two more times. In the end she did tell me that she was sorry (at the count of 7) with the whimper of a child being forced into giving up the fight.
Stubborn.
The two scenarios really don't mesh well together. Independence is not something that Caleigh has right now and she knows it. Independence, in any form, is exactly what Eric and I strive for regarding Caleigh's future on a daily basis. Right now though, she is completely dependent on us. The truth is that Caleigh will need some sort of assistance the rest of her life. Sometimes... I just hate the truth.
I'm not sure where today leaves us. I think this is just the beginning. I do know that I'm going to put together a book, in the best children's language I can, about Caleigh's story. I think it's time to start educating Caleigh about her miracle life. About what makes her amazing and not just different. Other than the book and timeouts, I'm not really sure what else to do.
This whole parenting without an instruction manual stinks sometimes.
10 comments:
Oh this just broke my heart. Sweet sweet Caleigh.... I know the two of you will figure out a way to help each other through this. ((HUGS))
Praying you get it figured out. This has to be so hard.
This is heart-breaking in so many ways, so hard for you all. But just one small thing: I see so many kids with disabilities who just stare into space, like they have given up trying to get their needs met. Whenever Smiley is noisy I try to remember that and be thankful that she is always trying to tell me something ((hugs))
Oh Holly, it's so hard. When are starting to have some issues with Grace acting out as well. I often wonder if it is because she is starting to figure it out...she's different. All I know is Caleigh IS amazing and so are you and I'd like a signed copy when you get the instruction manual completed. Love you!!
You work so hard with your daughter, but I really can't believe that you put a developmentally disabled child in "time-out" (what does that even look like? She can't get up anyway) for an hour!!!
Supernanny, whom you reference, never puts neurotypical children in time-out for more than a minute per their age. She is quite clear on what you DON'T teach them by punitively leaving kids in time out for a long time.
It just seems like cruel and unusual punishment for a child who is already suffering enough.
Sarah,
Caleigh is developmentally disabled only in the physical sense. Not cognitively.
Timeout looks like any other timeout you have seen. We have a "spot" on an unused couch that we use. Caleigh is upright the entire time. You would be surprised how much scooting she can do to "get away."
I've seen the show Supernanny a hand full of times. From what I remember...if the child continues to recreate the behavior or get up repeatedly the timeout continues.
Although, I did do the timeout in 3 minute increments, I am not modeling my disciplining Caleigh after a TV show.
Discipline is a touchy subject for most. I can only expect for not everyone to understand.
I can say that being in the situation myself yesterday that nothing seemed "cruel and unusual" about the timeout.
Just incase you don't have enough on your hands, you should really look into getting the book about Caleigh's story published some day!! (If you hadn't already thought of that.)I would buy several copies, you are an unbelievably wonderful mom and Caliegh is the coolest kid around. Just wanted to throw that out there :)
Who does it hurt if Caleigh chooses not to wear her glasses? On the one hand, you're the parent, you call the shots... on the other I'm pretty sure that most kids get to decide for themselves on things like that.
Independence for people like us - Caleigh and me - looks like this: in the morning, my Personal Assistant (I think that side of the pond you'd call them aides?) arrives. I employ 5 at the moment, using funding allocated by local government, on a Direct Payment scheme, which means that I take responsibility for the budget directly rather than having some sort of home help sent round by an agency.
Because it's managed directly by me, I call ALL the shots. I write my own adverts, interview, hire, negotiate contracts, arrange training. I decide what they do, how and when. This system means that I am independent. Sure, I can't actually do a whole lot on my own physically speaking - drive my powerchair, use switches and a scanning unit to adjust my bed and a few environmental bits in the house - but I am independent, because I have total choice and control of my day-to-day life. It's not relevant that I can't weight bear or use a hoist to transfer - independence in that I'm living my life, on my terms - just like Caleigh will.
One of the big things for her will be learning to direct others like I do... next time you're in the library, see how it would pan out if you do *absolutely nothing* that Caleigh doesn't ask for - sit and read until she's worked out what she wants and built up a sentence to tell you, then pretty much try and be a voice-controlled pair of hands for half an hour. It's not easy, but it'll be a critical skill for Caleigh as she grows up and might help with some of the frustration.
If she doesn't yet have any contact with the disabled people's movement, now's probably a good time to start - go say hi to your local ADAPT chapter, let Caleigh meet some grownups who have some of the same impairments as she does. Too many little kids with significant impairments grow up without role models and it can make a HUGE difference in terms of self-image to spend some time in a space where people like you are not just the majority, but in charge. I started something similar at 9, I wish it had been 5 years earlier.
Hang in there. This age isn't easy for parent or child but it'll get better with time.
I babysit a boy with Down Syndrome, and when he was younger and cognitively behind, as many DS kids are, his parents and I put him in time outs. There is nothing wrong with that either. He knew well enough what he was doing was wrong and he definitely learned from it. I applaud you Holly! My heart also breaks that Caleigh was so sad though!
She is such a smart and expressive girl. I'm normally cracking up at the stuff she says with her ipad, but this just broke my heart.
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