Tuesday, July 22, 2008

Hmmmmm.....

When Payton was diagnosed with ws, everything we read spoke of how happy these individuals are. They have a cocktail party personality, are happy all the time, etc. At the time, we were still dealing with an extremely fussy child and it thrilled us to know in the near future our daughter would change from being nonstop fussy to being nonstop happy. I cringe now thinking about how silly Bob and I were to actually believe that. I thought I would start trying to prepare Payton for our move. She's known for hating change, so why not give her notice? Dumb mistake. I told her on Sunday and she has basically been an emotional wreck since.....for the exact opposite reason than what I expected. She wants to see her new house NOW. When I picked her up from Dawn's yesterday the first words out of her mouth was "You get boxes?". I know it's anxiety - in her own way she is nervous about it. And, honestly, Bob and I cannot believe how much this girl can OBSESS about things. It's almost easier not to tell her anything. She almost can't enjoy herself anywhere because she's too worried about what's coming up next. And I have no idea where that girl gets her energy. She can scream for hours about wanting to see her new house NOW and yet still be up til midnight. I'm now at the point of wanting to see how siblings cope with all of this. Right now, Koen just stares at her like "what the heck is your problem" but I know as he gets older he's going to get just as frustrated as Bob and I. I've seen and read what having a child with a disability can do to families and part of me feels like my head is spinning trying to make sure we're sticking together.

When Payton attended the learning center, the coordinator always said "Better to medicate the parents than medicate the child". I listened to this for a long time, but have since realized it's not the case. I don't think medicating Bob and I would make Payton feel better at all - she's miserable. The dev pediatrician recommended xanax or zoloft. If any of you have any experience with these medications with your child, let me know. (The medication he gave her to try first is addictive and can only be used once a month for a three day period - she needs something daily).

I've talked Bob into going to the alumni baseball game this weekend and he's going to take Koen with him. I'm hoping Koen and his gma Wanda can have some one-on-one time. Bob's going to head to West Plains Friday afternoon so he and his dad can build a computer together (Bob loves doing stuff like that) and then hopefully just relax and have a good time. My heart aches for Bob. For the past month he has been a completely different person - I think all the emotions, obsessions, stress from Payton have finally taken it's toll on him. I'm so glad he's willing to get away for the weekend.

7 comments:

Heather said...

no experience with those meds. Sorry. Celexa has worked wonders for Caleb. I know exactly how it is Tara. You just can't believe that they can go on and on and on and onnnnnnnnnn.
But they can.
Celexa has just about put an end to that severe anticipatory anxiety. I would contact Dr. Morris and see what she says about medication choices. She usually is pretty responsive.
Glad Bob is taking some time off. Now you're going to have to do the same or it will start to wear heavy on you too.

Laura said...

That poor little girl, my heart aches for her.
That's good Bob decided to go, you also need to make sure you're taking some "you" time. I know it can be harder that it sounds, but even 20 minutes a day of peace makes a difference.
xoxo

Nancy said...

I wish I had something to offer you. I hate seeing you struggle like this. Sending big hugs.

jbgrinch said...

My daughter Hope has many developmental problems and while it is not WS I can hear the same struggle for adult MH in my house. soemtimes time off is the only thing that can help but both of you need it. I try to give my wife the time in the garden or out for a walk, she gives me a chance to go ride my motorcycle. I Love Hope and when we adopted her I knew it would be a long road but One I picked. I hope you find something that works for payton and for you both. Love and prayers

Nancy said...

Oh bless your sweet heart. This sounds so familiar. Our daughter is Autistic and used to have great difficulty with change. Right now she (age 20) handles change well, but we must leave her room alone. When we bought her brand new white furniture for her room she was fine with all of it except the new book shelf (she is obsesses her books and one particular book shelf.) When we took the old cheap ratty Walgreen bookshelf from her room she cried as if we had abused her severely and would not stop. We eventually put it back in her room and it's still there today.

I would avoid medications if at all possible and try behavior modification. Try visiting http://www.therextras.com/therextras/ and ask Dr. Boucher if she has any ideas. Tell her I sent you.

Bless you dear one. You are in my prayers.
Nancy

Michelle said...

I've heard that sterotypical comment too many times (they are such happy/loving kids!) Believe me, there is more to my kid than that! She has more emotions than just being happy, listen to her tell me "no" more times than I can count on a daily basis LOL

I'm sorry you tried to prepare Payton for the move and now that's all she can focus on! Hopefully the transition won't be too tough on her after all though.

Glad you were able to talk Bob into getting away for that weekend- we all need a weekend getaway sometimes :)

Amy said...

Tara,

Many parents have success with meds and I know you are very hesitant, but I myself take antidepressents (like zoloft) and I know for me it drastically improves my quality of life. So here is my take, meds are good if they are monitored and improve the quality of life for the kiddo. If you look at it this way, the brain of a child with WS is an organ that is not functioning as it should, and the result of such is overstimulation, neuroprocessing is "off", signals given off by the brain are misfiring resulting in behavior such as Paytons. It is a medical condition. Like any other organ to make it work better you try different things. You change your diet, you eat better, you take supplements, you exercise, etc...and you take prescription meds. Her nervous system is not working correctly, it needs help. That is my take. If Payton can get a better quality of life you should try meds. BTW you understand that Zoloft is something that helps daily, it would help Payton every single day of her life vs just calming her with Xanax. They are 2 completely different kinds of drugs. Xanax calms people in the midst of panic or anxiety attacks, like valium. Whereas zoloft is an antidepressant which works all the time and is not meant to calm someone, but rather increase the seretonin in the brain so that a person who is not creating enough of their own seretonin get some help, which results in less anxiety or depression on a daily basis.
xoxo
Amy