Friday, April 17, 2009

Tough Times

I'm not sure why, but Bob and I both have been having a really difficult time lately. There's so many things we're struggling with lately. One big issue is how in the world to teach our two year old son that because he sees Payton behaving a certain way does not mean it's the correct way to act or react. I know everyone says to raise your special needs child the same as you would your typical child. I get that. The problem is, Payton has absolutley no self control.

Last night we took Payton to her first t-ball practice. Bob and I were both excited and even Payton was excited. The ball field she practiced on is pretty much right next to the train tracks. Payton is obsessed with trains, but when it's that close, the noise can be way too much for her. The first train came by and Bob was out on the field with her and was able to grab her and cover her ears, so that went ok. I get tickled at Payton because she has no focus, so it is very typical of her to just wander off and do her own thing. I expected that, and she did wander, but Bob was able to redirect her back to the field. For a good ten minutes (quite an accomplishment in our world!). After that ten minutes, Payton ran over to me and decided she was going to go play in the park (she was using the excuse of needing to go potty, but because she still doesn't quite know how to cover her tracks she blurted out she wanted to go play in the park). I explained to her that we were here to play t-ball and she would not be going to the park. So, she stiffens her arms down and screams at the top of her lungs. Embarassing, of course, but even much more so when my two year old son decides he will mimic her and return the scream and stiffen himself. He wants to be just like Payton (what little brother doesn't?) but that is unfortunately bringing a lot of bad behavior from him. He sees her meltdowns, feels the stress in the home, I feel sad for him having to see/feel all of this. I know when he's older I will be able to explain more of this to him, but for now, he see it and thinks it is okay to follow exactly what she is doing.

I ended up taking Koen home and leaving Bob to try and keep Payton focused. I guess in the next five minutes another train came by and Bob said that topped her off and she was in complete meltdown mode. He explained to the coach's wife that she had williams syndrome and that we would try one more practice and see how it goes but that these meltdowns are really not unusual for her. The coach's wife was extremely nice about it, but I feel once again sad over this. I think I get my hopes up thinking this is going to be an opportunity for us to be able to get involved, meet other parents, etc and the fact is it's just not going to happen this way. We feel alienated again. I'm sure this seems so selfish, but I just want to see her able to make friends, able to cope, able to control herself, and able to participate in things.

At work I hear my co-workers talking about taking their family places, going out to eat, taking their kids to movies, etc and I want that so badly for my family. Payton is getting better, but it is still hard to go places because we have to wonder any time we take her if she's going to melt down....and once she hits it, you can't pull her out (as you all know). Is it ok if Payton doesn't play t-ball? Absolutely. But it still feels like it's just another time that we've tried something, had our hopes up, and are again just stuck at home.

I don't know why Bob and I are having such a tough time right now - it may be the mix of frustration over her behavior and that we're still struggling getting her blood pressure under control (yesterday it was 140/80)....but for some reason, we're having trouble coping. The doctor yesterday did increase her anxiety medicine and in the next week we'll look at increasing her blood pressure medicine again. I think we want people to tell us this is going to get easier, but I am guessing it's just different milestones/experiences that you miss as they get older that really bring you to your knees?


Amy said...

You know what, as badly as I am sure youu want this for Payton, the t-ball thing, I wonder if there are otherr activities for her that will not involve trains or being outdoors which is super distractable. Maybe gymnastics, swim lessons, or music lessons. Try to find ways to set her up for success, rather then challenges.I think in the end, the sense of accomplishement will be great for you both. I know Avery's music lessons have been awesome for both of us. And BTW music also has other benefits like helping focus, and even positively affects a person's health and well being.

Aunt Jacque said...

I pray you and Bob will find the answers you are so in need of. Parenting is difficult when all situations are good and I won't try to say I understand what you are going through but I do know God does understand. Please know that He hasn't forgotten you need His help and only He can help us when we are feeling so helpless. Sending love and prayers to you.

sara said...

Hey, Tara. As I read this, I just wanted to cry. We've talked many times about all of this and I know it's such a difficult and isolating situation. I love what Aunt Jacque wrote: God knows what you need and He can meet all of those needs. That is so true. Please know that we're praying for you. And anytime you need a break send your little ones my way, or all of you come down. We'd all have a great time playing outside!!! Besides, Laney misses her Payton!

Teresa and Shawn said...

I totally feel your pain, Tara. Our oldest does t-ball, soccer, and swim, and Clare is always asking when does she get to do something. I don't think she is not ready for an organized sport with other children, so we signed Clare up for swim classes. Our YMCA has an adaptive swim class for kids with special needs. It was awesome! It allowed Clare to go at her own pace. She didn't care that she wasn't with "typical" kids, and she actually learned how to swim independently of us with a bubble or noodle. I didn't think she could do it, and she did! We've also thought about the Special Olympics (her preschool has one for her age group) and a town has an adaptive baseball team as well. I'm coming to terms with the fact that it's more important that Clare has fun and enjoy herself versus her fitting in and doing normal things. But it's still hard.

And about Koen copying Payton - we deal with that with Simon and Clare. Simon is almost 2 and has passed Clare developmentally now. It's been very hard for me to realize that. Clare does not know that Simon is more advanced, though, so that makes me feel better!