8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: Summer Vacation and a Child with a Rare Form of Autism

Wednesday, June 15, 2011

Summer Vacation and a Child with a Rare Form of Autism

We are only three weeks into summer vacation and I think this, by far, has been the most difficult transition so far.  It is so hard keeping to a routine and schedule with all of the appointments and camps that we have.

Caleb was off behavior wise the entire month of May and while things are better, there are still many off moments - moments when you just know which version of Caleb we are going to see.

Today I had to take Little Guy to his physical therapy appointment.  We had bought a portable DVD player hoping that if I brought that to appointments with Caleb that he would be occupied at the appointments.  Well, today he watched a short video, but then decided he wanted to play.  So he played.  But then when we were almost finished he decided he wanted to watch a video.  I told him we were getting ready to leave.  He kind of fussed, but I was able to distract him.  He wanted to carry the player, but I told him he needed to put it in the backpack.  After what I thought was going to be a major issue, he did put the player in the backpack.  But then we got into the hallway and all of a sudden I was stupid and he didn't like me and he was refusing to leave with me.  I'd get him to take a couple steps and then he would stop and refuse to go again.  At one point he was telling me he hated me and someone walked past and said, "It's alright."

Why do people seem to have to stick their nose into other people's business.  I was handling the situation and other people getting involved really doesn't help, especially with Caleb.  UGGGGGGHHHHH!!!!  I really need to get some business cards explaining Autism made and keep them with me at all times.

I read this article today and also need to sit down and implement a token and reward system for Caleb when we are out in the community, which I think would help a lot.

One big issue we've been dealing with Caleb has been his refusal to eat.  He's always been a difficult eater and not wanting to eat what I fix.  That has been one battle that we have decided not to fight (and is probably not the right answer, but with so many other things we have to battle, that's just not a battle we're ready to deal with!) and let him eat something different.  Usually it's a bowl of cereal (normally Cinnamon Toast Crunch), waffles or pancakes.  Lately he's been wasting a lot of food, just because he gets stubborn and refuses to eat.  We have stuck our heels in the sand and he does not get a snack before bed if he doesn't eat what he asks for and is given.

Well, tonight he was playing one of his games and was refusing to eat.  We gave him numerous chances to eat.  He got up from the table and I asked him multiple times if he was finished.  He said he was.  I reminded him if he didn't finish the cereal he didn't get anything else tonight.  He said he was finished.  So I took his bowl and dumped the rest of the cereal.  He got upset and went and slammed his door.

When bedtime came, he got very upset when he asked for a snack and I refused to give him one.  Again, I was stupid and he didn't need me any more.

It is so hard to listen to your child tell you that he doesn't need you and it's hard not to react, but we can't react or else things will be that much worse.

I really wish that we could have one good day.    Is that too much to ask for?!?!?!?!?!?!?!?!

I'm feeling guilty, but I'm looking forward to our trip in July.  For a week in July, Caleb and Cassidy will be attending Camp Barnabas and Tony, Little Guy and I will be going to a resort in Eureka Springs, Arkansas.  I know Tony and I both need some time to unwind and not be on edge so much.  But like I said, I feel guilty for looking forward to this.  I'm also praying very hard that Caleb gets under control before camp.  He's never been away from us for that long except for his stays at the psychiatric hospitals.   It should be an interesting week!

We are in our first full summer of in-home support hours provided through the MR/DD Waiver through the State.  We have learned that due to the difference in the amount of hours we're given in June versus July that next year if we do plan on taking a vacation or sending the kids back to Camp Barnabas, then we need to do that in June versus July!  I'm trying very hard not to complain about the difficulty in scheduling, because we are VERY thankful for the help and support that we received through the Waiver, it's just a lot to keep up on!

Some days I really hate Autism!!!!

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