Sunday, September 6, 2009


You know, we've been at this for nearly six years with Payton, and Bob and I still feel absolutely lost sometimes. The doc increased the most recent medicine again and we think we are seeing some improvement. We do have to take her in for blood work this week some time....but other than that, I am hopefuly this week will be better for her. I can't really think of the last time Payton has felt at her best. Her blood pressure has been on a wild ride lately and it's taken her father and I with it. It's so emotional when your child doesn't feel well and there's not a darn thing you can do about it.

We've been venturing out to ballgames, a place called Kangaroo Gym (where kids can bounce like crazy), etc. and Bob and I are becoming more and more fearful Payton is not going to 'outgrow' the emotions that go along with taking her places that may be more loud or active than what she is used to. She really does want to go to these places, but once there for a bit she really does just lose it and spends a lot of her time crying (or screaming and crying, I should say). At kangaroo gym she discovered the bathroom sink and spent a good thirty minutes continually washing her hands. It was irritating to me - after all - there were tons of kids there having a ball and she should've been doing the same thing. But, again, I've got to remind myself that what makes the other kids happy won't necessarily make her happy.

And, ofcourse, the greatest part of it all was that Payton crashed her first birthday party. At the gym, there was a child having a birthday party and Payton managed to make herself well known to those attending. She talked to all of them and then proceeded to tell them she was very hungry - wouldn't you know it - she ended up with a piece of spiderman cake. A tad embarassing for me, but nothing compared to the embarassment I received at the pizza place afterwards where she proceeded to ask strangers for money because she wanted to play the arcade games at the front of the restaurant. And, yes, one gentleman obliged :) On the way home Bob and I were talking about how frightening it is that Payton sees everyone just the same. No one is a stranger. So scary! She will give anyone a kiss, give anyone a hug, and talk everyone's leg off. While I'm sure she may touch several people's hearts, it scares us to death.

So, those of you with older kiddos......should her emotions be better by now at age six? She is getting stronger and stronger. It is so hard to carry out a screaming, kicking six year old....and I really get tired of the stares. I know so many of them think I need to get my child under control but they have no idea how there is just no winning with her. She just doesn't 'get it'. And Koen-he's the polar opposite. Two years old and he knows how to behave. I'm not saying we have him completely figured out - I know kids change as the grow - but he understands things. Bob and I really are afraid that when Payton is thirty years old we're still going to struggle with her understanding things and not throwing a terrible fit. (I've read stories like that on the listserve and I really don't want it to be like that for Payton). It's awful for Payton and it's exhausting emotionally and physically for Bob and I.

We took Payton to the dentist last week and she'll need to have surgery (which we figured before going in there). With her medical issues they'll have to do it in the OR, which is great with us, it makes us feel better that way. Because she's not in any pain, she doesn't have to have it right away - so we're happy about that. We see the cardiologist in a few months and with the way her blood pressure has been, I'm anxious to go to that one. I know I may not ever get any real answers, but it sure would be nice to :)


Amy said...

I can't say much in terms of Payton's age and if she should better equipped to handle her emotions at this point. I know I am constantly thinking and rethinking strategies for postive outtings. Avery's BP has been normal, so I know her mood swings are not from that, but her range of behavior is vast. I never know what is going to happen. Last week she was superb at my neighbor's house for Sunday dinner, this week a nightmare and I had to drag her home kicking and screaming. She had only been home for an hour from her dad's and I was exhausted by that one hour! I have to block out all the negative behavior, like the stuff you mentioned about hand washing and party crashing because if I thought about it I would be miserable every day of my life. SO keep working hard and EVENTUALLY it will sink in...I mean that is how it is with Av. It comes slowly, but I do see improvement.

Noel said...

I can relate to so much of what you wrote. Abi does pretty good with her emotions, as long as her BP is under control. She still be no means is anywhere close to a "normal" child but you can at least tolerate the outbursts. This BP/heart/emotional rollarcoaster is so draining. I really wish you had never had to get on it with me :) Just know that you are not alone and ANYTIME you need to talk, I am here. We could even try a mom's dinner or somthing some weeknight...I could meet you half way! Sending my love to all of you :)

Julie said...

What dental work is she having? I don't have any words of wisdom since Noah is younger. He does have some sensory issues but nothing we haven't been able to handle, so far. As for the over friendly stuff, to the point of overbearing and obnoxious. Now there you have our number. Wow Tara if I could tell you how many times I have left somewhere wanting to bawl my eyes out because he included himself... At Lexi's games this summer he stole food from everyone. The "hi" thing is still and issue. It is now usually followed by "where is your car" but we started something new the other day. "where do you live?" This terrifies me because I know as he gets older he is going to tell people where he lives. Like I said I am not much help but at least you know we all can relate to one extent or another. You continue to be in my prayers.

camille said...

Wish I had some helpful information but of course Connor is younger too...we're not dealing with bp issues as much but he is still on an emotional rollercoaster everyday. Simple transitions still set him off. It has improved some since starting the celexa but most of the time, I dread taking him to any kind of social function. Just today we went to an outdoor picnic at a friend's house and we were able to keep him occupied for about an hour in the jacuzzi but after that it was a disaster. He went in the house and was trying to spin everything which is so so obnoxious. Glass candy bowls spinning on the floor, anyone? SHEESH. It literally feels like we are just trying to keep him busy doing whatever is as close to appropriate as we can get. We ended up leaving early before the food was even served. I said to Adam on the way home, "I so wish he could just play normally." But he can't. So we just plow through those situations and hope in the future it will get easier. I know that's really no help to you, but I do understand the stress of taking kids like ours out in public and then dealing with's so exhausting.

Tes said...

Hey there, wow girl I so relate to yours and everyone else's feelings on this. HOwever I can say that Lila has gotten better, just this weekend her and I went to the pool. I realized after we got into the pool that someone was having a little kids party in the club house. Amazingly enough I was able to redirect Lila, alot of answering her questions and relating them back to us. "yes the hot dogs smell good, do you want to help me cook some? yes ok well lets go cook!" That is just ONE of the many issues i had to address, thank goodness cloud cover made it cooler and i took the opportunity to get the heck out of there~
I have also noticed when I have Ava she tends to act up more. Many times sadly my husband and i have to split up and take them seperately. It makes me sad but sometimes that is what it takes. It will get better Tara.

Heather said...

You can always call me , Tara.. We could chat for hours about our twins.

tara said...

Ha! That is so true, Heather. I always know I'm not the only one out here struggling like this.....I just wish we could all move on the same block so things felt 'normal'!

Anonymous said...

Logan is having some dental work done in October at the hospital too. I'm very nervous about it so your not alone. On another note followed your link on your blog to the Colleen Swindoll's special needs blog. She recently did a broadcast with her father on Insight for Living which you can listen to at You should give a listen if you already haven't already.

Faith Kristiansen

tara said...

Thanks Faith! I'll check that out!

Michelle said...

I'm sorry the emotions are so intense for Payton :( I feel lost sometimes still with how to deal with things with Kayla too.

Kayla also hugs anyone and when I try to stop her or apologize people usually say oh she's ok. But it's not ok to hug strangers and she needs to learn boundaries. I worry about when she gets older too. It won't be so cute to a hug a stranger LOL