Liam's Special Helper

Liam is a particularly busy little bee. Keeping his hearing aids in his ears requires one on one attention to keep his hands busy and at the very least make sure he's not eating his aids. Knowing that I wouldn't be able to give him that attention on my own, I made it a point to find someone to come a couple times a week and spend time with him and help him keep those hearing aids in his ears.

Kassidi is in our ward at church and happens to live just down the street. She showed interest in the job, so I went ahead and hired her. That was one of the best things I've ever done. She's dependable, willing to learn whatever it takes to work with him, and (most importantly) happy to be with him. She's always smiling and gets right down on the floor and plays with him.

When she first started, he was pulling his aids out about every 30seconds-5 minutes. Now that he's had some time at school and with her, he's leaving them in upwards of 15-30 minutes at a time. It's working!! He's learning that he has to keep his ears in when Kassidi is here, and he doesn't mind. He loves her. The minute she comes in and gets his hearing aids, he scurries over to her and plops himself in her lap to wait for her to put his aids in and then waits excitedly to see which toy she's going to pull out and play with him.

She comes with us places when it's just me and the kids (I don't try to keep his aids in when we're out and about yet. I don't want them lost), babysits for all the kids now and then, and has just been a ray of sunshine and a blessing in our lives. She even comes over to help out now and then at church when the kids are feeling a little too rascally.

So there you go. Those of you who have hearing impaired children and are feeling a sense of guilt over the lack of time you have to help your child wear those all-important hearing aids can consider finding an eager young person to help keep them in. Someone like Kassidi who has a real desire to learn about hearing loss, has a lot of energy to spare, and is fun-loving can often be key to the success of our sweet little people. While it can seem like a crazy idea to hire someone so young to do something so vital, I can attest to the fact that even crazy things can work. And work it has in our home. Thanks, Kassidi, for all your hard work!! Liam loves you!!

Today I'm Frustrated

One of the responsibilities that comes with parenting children with any special needs is that of constantly advocating for your child. If I make the mistake of letting my guard down and thinking that everything is okay for a little while, something will go wrong. I let my guard down. Something went wrong.

Before the school year ever started this year, I had a loooooong chat with CJ's teacher and talked about how he needs her to be clear and consistant in her expectation from day one. While I understand that it may sound mean or tough to do this, CJ doesn't understand boundaries that are simply spoken to him. He needs them shown to him, and he needs them to be the same every single time.

I explained about the fact that he needed an immediate related consequence the first time a bad behavior happened and a positive clear consequence every time he did something good. While I don't need to know every last thing that happens at school, I do need to know about issues that require intervention. I can only support the teacher from home if the teacher keeps me informed of what is happening. I made clear that a bad report from school won't hurt my feelings. I want to help CJ succeed, so I need to know the good, the bad, and the ugly.

We are one fourth of the way through the school year and CJ has gotten a stamp in his calendar every day but three this year. Knowing that I'd been so clear about what works for CJ, I assumed that things were just going better for him. See? I let my guard down.

On Friday, he got a note home saying he'd been throwing pencils in the classroom when things didn't go his way, so he didn't get a stamp in his book. Okay. So, he lost his friend and computer privileges right then and there. He knew why he'd lost them, and took the consequence. I figured things would be better.

Then I got a call from the principal today. Apparently CJ had been sent to see her on Friday because the pencil throwing had been going on over the series of a few days. What?!!? He got a stamp all but Friday. In his mind, that meant what he'd been doing was okay. She went on to tell me that the teacher also had moved his desk because he was constantly disruptive. WHAT?!?! I NEVER got a message letting me know this was a problem, but only found stamps in his book each day. The very first time he was disruptive was when he needed to lose the privilege of sitting by his friends, at least for the remainder of that day. Now his desk is moved away from the preferential seating he really needs for best learning.

I asked when this was all happening and was told that it was mostly during all last week. At the start of the week, the audiologist had changed his map on his processor to a program that works better, but CJ hates. I let the speech teacher know and asked her to let me know if there was a problem in his behavior since that's how he usually lets me know he is frustrated with something. I assumed this information would be passed on, but hadn't heard anything about his behavior going downhill. See a correlation here? I do.

It gets even better. As a result of the continued bad behavior, he was going to be losing his recess today and tomorrow. Okay, great. So, now he's being punished three days later for something he did. At first I said okay, but then really thought about it and was very bothered by this plan.

I called the principal back and explained my position on this. I asked how his behavior had been all day and she said it was good. I let her know that taking today and tomorrow's recess privilege away tells him that on the days he was poorly behaved, he could still get what he wanted. But, on the day that he made good choices, he was still punished. She said she'd told him why he was losing recess and that he seemed to remember the choices he made that got him here in the first place. That's nice. You can still expect an explosion of bad behavior because now his boundaries are very blurred.

I let her know she could still have taken his recess, but in a way that correlated with the bad choice. "CJ, since you threw your pencil, that tells me you aren't ready to be allowed to have it so I'm taking it from you now. That means you can't do your work right now. Instead, you'll have to do it during recess when I can be with you to be sure you don't throw your pencil." See how that works? You can still take recess from him, but have some distinct meaning behind it. He NEEDS that.

CJ has a great teacher who is so sweet and kind with him. I know she's just trying to be patient with him and give him the benefit of the doubt. She wants him to succeed and to be happy at school. Luckily, that's my goal for him too. Now we just have to come to a place where we are both working in the same way to get him to that goal.

In the start of the year, I suggested we put a behavior plan in place for him. The school didn't think he'd need it. That was the place where I made my biggest mistake. In that moment, I chose to agree with them instead of advocating for CJ to be successful by having a plan to present clear boundaries for him.

So, now I know what he needs. I've called a meeting and will ask for the following:

1. The very first time he does something unacceptable, he needs to be told that it's a bad choice in no uncertain terms AND what to expect if it happens again.

2. If the behavior happens again (and it will), the described consequence MUST happen with no discussion of warnings or extra tries.

3. If he does something great, it needs to be acknowledged as well. CJ thrives on "earning" points.

4. If CJ hasn't really earned a stamp, he shouldn't be given one. If the teacher wants to continue giving stamps for overall good behavior despite the occasional bad choice, there needs to be some other sort of point system that he can earn throughout the day to help him know when he did well and when he didn't.



So, I'm off to advocate once again. I'm not sure when this meeting will be, but I will be sure to return and report when all is said and done.

The Bus Bully

We're really proud of our CJ. He's come far over the years. I was sitting back today remembering the day he was given his name and blessing as a baby. I remember praying that he'd be blessed with his hearing, and how I just sat in the back row of the church sobbing as I listened to his loving father bless him with the gift of Deafness. In that moment, I knew that he was the child we were meant to have. I didn't have any idea in the world how we'd rise to the occasion of raising this precious, quiet child. I wondered how his Deafness would ever be a gift of any kind. If I'd only known then what I know now, my heart would have been rejoicing over the opportunities I'd been granted to parent this amazing spirit.

CJ's hearing loss has forced him to be strong-willed and determined if he wanted to find his own voice. And find it he has. He has impeccable speech, an amazing thought process, and is in most senses a typical child. (If there is any such thing as a "typical child" in the first place).

With all the wonderful things CJ has going for him, there is still some opposition in his life. Let's be honest, though. There is opposition in all things, right? For CJ, the greatest trial right now is learning to relate to peers his own age. CJ doesn't always understand what other kids are trying to convey to him. He especially struggles to understand sarcasm. Additionally, he seeks out the good in everyone and is sometimes overly trusting. This has gotten him into some trouble recently with a bully on the bus.

The thing is that he didn't know he was being bullied by the other child until the other kid came right out and threatened him. He knew he didn't like that the other kid kept stealing his books from him. He knew the other dude made mean faces at him, but he didn't really understand what it meant. Luckily, he has some friends on the bus who did understand what was happening. Being that they are girls and in kindergarten, these little friends made sure they told me all about it. My radar was already on alert when CJ came home and told me that the kid said he'd "punch his eyes out" if he accidentally bumped into the the other kids' backpack when the bus went over a bump again. At that point, CJ understood what was going on.

He told me what happened and that he was scared to go on the bus again since he was assigned to share a seat with the other kid. He was able to let me know that he didn't like it that the other boy was taking his books, and that he wanted him to stop.

What CJ didn't understand is that he can stand up for himself. I contacted the school and the situation has been rectified. Apparently the other child is having a lot of issues at home that are spilling over into his schooling, so we're hoping things get better for him in general. More importantly, CJ has learned that he can say something to the bus driver, his teacher, or even to a person who is bullying him to help make it stop.

This is obviously something that CJ will need to work on over time, and his speech teacher at school is going to work with him to help him learn more about what messages others are sending with their words. She'll help him learn some coping mechanisms and what to say in these situations. Hopefully this is the last we'll hear from this particular bus bully, and the start to a lifelong skill of self-advocacy for CJ.