Things are going, dare I say, good...

[anon4now]

DS has really put in a lot of effort into managing his disease. And DH and I are following suit. I think it's great and I hope this good thing keeps going.

To start, DS has verbally announced how he feels at times. I definately have taken cues from his body language, and have recognized a trigger. One night right before bed he got in trouble for making a mess with an ice pop with DH. He handled the conflict fine, but when he came to say good night he looked sad. So I asked him if he was ok to go to bed alone, and he shook his head. So I told him I would come up and relax in my room with the baby monitor and if he needed me he could call for me. He said that was good. So we did it for about 15 mins. I checked in on him and asked if he was ok and he said yes, so I went back down stairs.

Today we got in the car to go to a local town fair. He got in the car and pulled his seat belt real tight. I gave him a questioning look and he said he felt "antsy". I told him it was ok to feel that way. That we had a 15 min drive and he could calm himself down and just relax during the ride. About 10 mins in, he started talking to his sister and everything was ok. At the fair he did an excellent job with all the activity. I kept him close, gave him verbal cues about each transition, gave him treats and positive remarks. We left the rides til the end, and after the last one (which left me a little flustered) we headed to the car. I held his hand the whole way to the car because he was starting to breakdown. When we got in the car we didn't talk about the fair, but we did talk about our plans (drive for 1 hour, go home, eat dinner etc.) By the time we got home he was doing great! Bed time was hard from him. All that sun, he got some sun burn, plus he has a head cold that seems to hit him hard today, plus all the over stimulation of the day, he's having a hard time falling asleep. I put a fan on to provide some white noise and a cough drop and some cough medicine. So hopefully he'll be asleep soon. I promised to go check on him, so when I'm done posting I'll do that.

But I'll tell you...all of that is so much better than how it would have gone down a month ago. Most likely, we wouldn't even have gone to the fair because when he got in trouble for the ice pop mess, he would have broke down and cried for 2 hours and started hurting himself and we would have decided that if he is having that kind of weekend, we shouldn't bring him to the fair, plus we would have been way more stressed out and just not wanted to go. And the whole weekend would have been spent talking about how we don't get to spend time together and how we're always stuck in the house...you get my drift. lol.

I'm feeling good. I'm enjoying this time. I'm glad we are all working together to make things work, to make things successful for our son, and to help our family overall.

I just wanted to post some positives since for so long things have been so negative. TTYL

Anon

[katiekat]

8-)Great news!!! I am so happy for you (and him!) I hope it continues.

[charliegirl]

I'm glad things are going better.

When you said he tightened his seat belt tight because he felt antsy, it made me think. Many kids with issues wear weighted vests and something about that makes them feel more comfortable and in control. My son has had to have a heavy hoodie for years. He wears it constantly and even at times in the summer. He just feels better with it on. Sometimes he wears the hood up at home if things aren't going well.

If you haven't tried that, you might want to consider getting him a very heavy hoodie. Its getting close to winter so you could just get one and see if he seems to wear it more or is more at peace when he has it on.

It you notice a difference there are even weighted blankets you can get to help him sleep better.

[bugsmom]

Anon, I'm so thrilled for you and your family. It sounds like a dark cloud is starting to lift. Many hugs to you all tonight.

[2sentbygod~Brooke]

[jfla]

anon,

I am so glad things are going so well for your son and family. I loved reading your post and your sensitive responses to his needs. Great job, mom!

[jj]

I so happy to hear you had a good day. It sounds like everyone was doing all they knew how to make it a good day.

I'd kind of forgotten about the weights that help kids. As an adult I must have something to ancher my legs around, ie: rungs of a chair, at home I sit cross-legged - indian style (is that politically correct to say?) or cross my leg normally but tuck my crossed leg behind my other leg. (If I'm chubby I can't do that, LOL)

So anyway, it may be worth a try when he is feeling especially antsy, like CG said.