When you have a child like Gavin and now possibly Emmett John how do you handle certain situations that typical children need to experience.
Over the years we have learned that Gavin CANNOT handle even mildly stressful situations. He does not handle birthdays well for example. It is way to stimulating. He will be impossible to control for days afterwards sometimes. So we have learned that Gavin just can’t have birthday parties. So we have adjust them so that people kind of filter through over the course of the week and he seems to handle that better. Also if we do have a small low key gathering for him (which again is rare) we have it at someone else’s house. The reason for that is because we can physically leave the party behind. He seems to respond better to that then having something at home.
This works out well until you have other “typical” kids. Now you have to figure out how to give your “typical” child what he/she deserves and CAN handle without overwhelming the other. We have really struggled with trying to find that balance. Elliott Richard is old enough now that he wants to have people around for his birthday. What do you do when what’s best for one is the worst possible thing for the other?
When Gavin gets over stimulated he will meltdown, and I mean meltdown. That tends to put a damper on the day. But if we remove Gavin prior then he feels left out and then we have problems there. It’s very difficult to strike a balance. We don’t want Elliott Richard to have to give up any more then he has to. His life is already going to be challenging enough with everything going on.
We find that going to families house for Christmas or now Easter usually ends in disaster. Do we split up the family for the holidays and someone stay back with Gavin? Our family always says he fine and they can help but we have to live with him at home.
How have you guys handled situations like this?
LT
For a long time we just didn't participate much in holidays. It always ended with me trying to keep him from hitting biting kicking or otherwise hurting someone as he screamed at the top of his lungs. It was very hard to have everyone looking at you thinking your child is a monster. Especially when without social stimulation he is the sweetest child around. He's getting a little bit older now and he seems to understand that people agitate him. As soon as we get to the location of the party we designate a "quiet" place for him, somewhere that he can go where there won't be other people usually somewhere darker like a basement. If we notice him becoming more aggressive or starting to act out we'll take him there to calm down for a short while. We've been doing this for three years now and more and more often he will take himself there, he seems to know sooner than we do when he needs a break. We recently had a B-day party for his younger sister at our house. I noticed he would disappear down to his room occasionally and then return to the party. He did have one huge meltdown when the kids were playing before their parents picked them up and the boys all went in his room to play with his trains and "weren't doing it right". Now I'll know for the future not to let them in his room. I think you just have to do what works for your child and sometimes it takes a while to figure out what that is.
I hear your predicament.. We always get the bring the boys we will help out with Max.. When we get to the function, nobody is really helping and we are running around after Max, and soon after we wish we never came.
So.. I guess for the holidays.. I would probably split the duties…Because the reality that the child that has the awareness wants the birthday parties or friend gatherings deserves it.
Eric and I just toss a coin, or we kinda go by who needs the break more….. And when I say break I mean, that the parent that gets to go to the holiday gathering without Max is the lucky one… LOL.. LOL…
Max is pretty anti-social anyway and he doesn't like a large crowd, He hates malls and tends to want to wander off and do his own sensory thing.. He is happiest at home, or in a large area where he is the only one playing… It's is very sad for us, because we so badly wish he had friends….
You know, I always get resentful when people begin talking excitably about their plans for Christmas……or Easter……or 4th of July. I think to myself, “Wow, it must be nice to just bring the kids to the family event and let them run off and play with cousins while moms and dad can sit back and visit with family.” I lost count of how many times we ended up leaving these parties wishing that we never came. :(. And yes, we get the “Oh we’ll help out with Matt”. The truth is, once they see how high strung and anti-social, and agitated he is, the “help” seems to not be available. Its ok, they just dont’ understand.
So, with holidays, we always “play it by ear”. Lucky for me, John doesn’t like being around a ton of family anyway. So if Matt is on the verge of a meltdown, John will just bring him home. Or actually, another thing we have done in the past was give him an increased dose of Risperdal on Christmas day and Thanksgiving. It didn’t knock him out. It did mellow him out. His dr told us to now just give him the dose on an as needed basis. Not sure if that will work anymore since it seems to have lost its effectiveness anway. So ya, I hear you on Holidays. As for birthdays, Matt only wants a party with trusted grown-up family members. When Alec is having a party, we have Matt stay at his grandmas. Take care!!!
Mandi
we tend to down play the holidays like this year we got a swingset for the kids that will be their easter present so to speak. We try not to make too big a deal due to the overwhelmed feeling, we don’t usually do things with relatives other than grandparents of the kids due to the stress of the situation. We look at what it will do and try to keep their moods in check. We also let them have down time during the events. Usually during birthday parties we do small things at home with the siblings. Makes it easier on them. Sometimes we have to make sacrifices we don’t want to make due to our children.
I hear that!!! Our main concern is allowing Ellio Richard and Emmett John to be kids. What's best for these guys usually not what's best for Gavin. Like this year we are supposed to go to my brothers for Easter. It would be great for the other kids. They may an Easter egg hunt or something. Gavin dosn't do well with things like that but he still wants to participate. We don't want to rob these two of the experiences just because Gavin can't handle it. Does that make sense?
LT
yes it makes sense that Gavin would want to participate cause things like egg hunts are fun, it's hard though cause you want them to have fun but then you get the backlash from over stimulation, which can last up to a week with some kids.