Sunday, November 8, 2009

Just One of the Boys

In a happy but annoying little way, this was one of the longest weeks ever! Last weekend, all the "grown up" boys in the family started making their plans for this year's deer hunting season. Next weekend is opening day, and in my family, that means that this weekend was "getting deer camp and deer stands ready weekend!" These guys can make a two week deer season last forever if they really wanted to.

Anyhow, last weekend during the family discussion, Alex piped in asking to go with them and then helped make the plans. He was so excited. He was going to get to hang with the Big Boys! Dad was pretty excited, too! Sometimes its hard to find things for Alex and Dad to do together. This was perfect!!!!

As I said, that was Saturday. That is important to know because the plan was to go to deer camp Saturday, a full week later.

So, on Sunday, about twenty seven times, Alex asked which day he was going to deer camp? Not until Saturday, one week away, we'd tell him... all twenty seven times. That's ok, we knew he was really excited! He didn't even have both feet in the door after school on Monday, "Is my orange vest clean yet?" "It will be.""Don't forget it!" I had the feeling that there was no way I'd be able to forget it! Tuesday, he came home wanting to know how many days were left. Oh, geez... Wednesday it was a checklist of who all was going. Unbelievable, the thought that was going into this day! Thursday was deadline day for the vest. Thank goodness I had it washed!! I think he modeled it for us most of the night! Friday, he packed. They were only going for the day, but there are things a boy needs while out in the woods! His vest, his hat, boots and snacks. I think he had it all! Needless to say, he was up with the sun on Saturday.

Alex didn't know, but there was a little bump in the road on Wednesday. Some of the "Big Boys" had decided to make other plans. Everything fell into place Saturday, though. So, all ended well. But, this happens so often to Alex, that I wanted to share it.

People are usually pretty good about including Alex in the planning of special events or activities, or even things as simple as a shopping trip. It's the following through of those plans where we seem to have difficulty!

More often than not, the plans change, or someone decides that it's just too much to take Alex with them, or that they just don't want to go. I understand that. I know this is really no big deal to most people, plans change, right? The problem is, that Alex can't understand. All he knows is that he was going to go hang with the Big Boys at deer camp and now, suddenly, he's not. One of the worst, though, is the "I'll take you next time." Alex has his problems, but he knows that "next time" never comes.

Sometimes people really convince themselves that Alex doesn't have feelings, or that maybe he'll forget. That really ticks me off! Not only does he never forget, but he does have feelings! For a reason I can't explain, his emotions and feelings are stronger and deeper than most of ours. When he is upset about something, he is upset in ways I cannot even explain, and this can last for minutes or hours or days!

I can't tell you how hard it is to watch these people let him down like that. I know it not intentional on their part, but it breaks my heart.

Alex doesn't handle change well. Let alone a change that affects his emotions the way something like this does. This would be a major let down to any kid! Think of how it affects a kid like Alex who struggles to understand the regular day to day events. Obviously, being included in this "special" day meant an awful lot to him! He talked about it and planned for it every hour of every day of the week, now depression and anger for every hour of every day for the next week. I wish people would understand that!

Emotions are a difficult area for us. Alex can't always communicate his feelings. If they are negative emotions or feelings, they usually are not communicated in an appropriate manner! This is never good! We can never seem to guess when or where the inappropriate display of emotions might rear its ugly head! If we could, the title of the blog would be "The Life of a Powerball Winner!" However, it is usually a safe bet that it will not end well!

I think I'd prefer it if people would just surprise Alex with outings. Don't tell him you are going to take him somewhere or do something with him just to appease him! He thinks you mean it! And we he realizes you don't, he goes through hell! That is a terrible way to treat any person!Especially Alex!

The good news is that everything fell into place Saturday. Alex and the Big Boys loaded all their junk into the truck and headed out to the woods! They didn't get home until after dark. I am fairly certain Alex had a good time, all he'd say was, "I'm exhausted." Exhausted is a pretty good word for him too! I did try again later at bedtime, this time the response was, "I'm bushed!" as he rolled over in bed with his back to me, I guess I'll hear the rest later.

Oh, and for the record, Alex doesn't go to deer camp during the hunt, not even to just sit with Dad. Never mind the gun issue, I am fairly certain he couldn't sit still long enough. And if a deer even got close to them, Alex would let out a scream that would have the deer running to the next state!

But for this weekend, bushed, exhausted or otherwise, Alex was just one of the boys!!!


Momma Mayhem said...

I'm so glad he was able to have his special day! I see this with my oldest. Joshua doesn't have typical Fragile X, he is being tested for mosaicism. This manifests its self in that he has some aspects in a big way and others not at all. One of those is emotional regulation. Everything is black and white. He feels people love him or hate him and he loves people or hates people. You are either going to take him somewhere or you are not and any delay means you are out to ruin his day.

And Jacob, if you tell him in the morning he is going somewhere, he will watch the car in the driveway all morning or try to get out to the driveway to be next to the car until it leaves. I think your surprise idea is great.

I am a nurse and I had a patient once, her father came over and asked how she'd like to go to the mall, she was all smiles. She was nonverbal. (I saw was because she recently passed away) The father took her younger brother and his friends, and told her "maybe next time" and acted like it didnt bother her.

I can say having been the one left at home with her that she cried and was entirely disappointed, not so much that she didnt get to go, but that she was taunted and treated as if she had no feelings.

People, even family members, can just be so unaware at times. As mothers we see things in our children they don't and we have to be the advocate for our children's feelings. It can be exhausting. Hopefully if we educate others enough, they will be conscious of our children's feelings in our absence.

Helen McGinn said...

I'm delighted he got to enjoy it. It must be dreadful when he is let down; as you said, none of us like it but most children can at least understand that the unexpected happens so this must be so hard on you all.

I came over from Sara's page, it is lovely of you to set this blog up.

Can I ask you a question, if you don't mind-I won't be offended if you can't answer or think I'm being unrealistic; I have a friend whose son also has fragile x. We're fairly new friends and I don't know her well enough yet to know how to approach this but for some time I wanted to help her in some way as I think it all gets too much for her sometimes.

How appropriate is it that I offer help or to take her son for a day every now and then? I've done some research and I'm fairly sure I know what to expect (although I also realise I can never know) and realise it could be hard work but not necessarily so, if that all makes sense. I'm ok with it being hard; all new things are hard, right? I'm fairly sure she trusts me as a mum of three kids myself (all just about the same age).

I just don't want to put her in a position of having to turn me down and put extra stress on her. Any suggestions? Thanks so much in advance. Could you email me if you get the time? She reads my blog.

Helen McGinn said... would help, right? *L*