Wednesday, May 28, 2008

Structure

Payton thrives on structure. Our intention for our long weekend was to just stay home and relax, keep Payton on her routine and pray for a good, peaceful weekend. And-that's exactly what happened. Payton was a princess. No major tantrums or outbursts and life was pleasant. The hard part is knowing that life can't be like that. I love a good routine, too, but the fact is life throws curveballs. We can't make each day exactly the same, but boy would I like to. The difference in Payton when she is in her routine is amazing. She's a completely different child and I needed to see that side of her again after the past two weeks we'd had with her.

Koen ended up with a virus over the weekend (I had taken him to urgent care because he had been waking up about every hour thru the night for the past week and finally began to run a fever). Well, it seemed way to familiar and I just knew he had an ear infection. Sure enough, that's what the doctor at the ER told me and he gave us some antibiotics. After the three days of antibiotics I was suprised he was still running a high fever so I took him to the ENT. She was frustrated at the ER doc (shocked he would say Koen had an ear infection when in fact he did not) and said he has the virus that's going around....run a fever for 4-5 days and end up with the stomach flu. Sure enough, that's what it was. Needless to say, he didn't need an antibiotic and the tubes were still in his ears (yeah!).

Since I was taking Koen to the doctor yesterday we decided to go ahead and send Payton to Dawn's. I don't feel right even saying or thinking this, but I realize how difficult of a child Payton is when I just have Koen. Although Koen is three years younger than Payton, it sometimes seems that we can communicate better with him. Yesterday at lunch Bob was watching Koen and he said it was so strange because it's like Koen just 'gets it'. He doesn't need constant explaining - or sometimes any explaining, he just understands things. I try not to let myself think back too often of what it was like when Payton was his age. It still hurts too much, but the difference is undeniable.

After realizing how amazing Payton does when she's on her normal routine, you would think I would be smart enough to realize that I shouldn't go and pick her up a couple of hours early from Dawn's. However, I was thrilled to be off of work and have an extra day with the kids (even if part of it was spent running Koen to the doctor), so I ran out to pick Payton up so we could spend some time outside playing. As soon as I pulled in the driveway, I heard the words "Daddy home?" come out of Payotn's mouth and I knew I was in trouble. I tried explaining to her that Daddy was still at work..."Remember, Payton, mommy came and picked you up early so we could play outside", etc etc etc. Ofcourse, reasoning or explaining doesn't do any good with her. I tried to entertain her, bring her out of her 'funk'....the blank stare started up (that look saddens me beyond belief....I would love to know where she goes, where her mind takes her). Soon, we were at the yelling stage, and eventually the full blown tantrum. Oddly enough, someone that barely weighs 30lbs is able to get handfuls of my hair, break my sunglasses, and kick my head like a soccer ball. Like Nancy has said on her blog before, these are things she would never even have considered doing to her parents. Me either.....and the behavior I see in my child makes me feel like a failure as a mother. I can't really explain the feelings this gives Bob and I......we get down, discouraged, exhausted - we feel like we have tried EVERYTHING and nothing is working.

Once Bob got home, I told him I needed about thirty minutes to get myself together - reenergize myself, so I went back to sit in the bedroom. Quiet is not good for me. I think too much when it's quiet. I've never been angry at God for giving us a special needs child....and I've never really been one to think 'Why me?'.....I usually think 'Why not me?'....I mean, I would be scared to death to see Payton in any other home.....it requires so much patience and if someone didn't have the patience, she could easily get hurt. But, this hurts. My heart breaks. It's odd when you love someone so much and you know in your heart she loves you, but yet she turns on you so easily and you almost see the hatred in her eyes. She bites, she hits, she pulls hair out, she kicks - and yet she wants and needs me when she's scared, when she's anxious, and when she can't sleep. I love her so much it hurts and I just wish I could fix this.

I have Friday off with my kids. Do any of you ever feel nervous about being home? I remember feeling this way for the first year after having Payton. I don't know if nervous is really the way to describe it......maybe it's a mixture of scared, nervous, and anxious. There's really no way to describe it to anyone on the outside because I'm sure it sounds so ridiculous. Afraid to stay home with your children? No, not really. Afraid of what's going to set Payton off and how to protect Koen. We'll be walking on eggshells.....I think this is when we feel the most 'alone'.

10 comments:

Julie said...

Again Tara, I can relate but it has nothing to do with Noah. When Amber was a teen I used to pull in the drive way from work and think, "Oh God what kind of a mood is she going to be in". I sometimes wanted to go back to work. I have compared it into being in an abusive marriage only it is worse when it is your child because you do feel like a failure as a parent. Especially in my case because Amber was not special needs, but sometimes hormones are just as bad. I have also had days like this with Grace. This is the first school year where I didn't literally stand at the door and pray to God that she would come home in a drama free mood. I so understand how you feel. It is so exhausting mentally. Don't give up though. Amber is wonderful now and Grace is getting better as she gets older. Payton will come around, I truly believe that. Thoughts and prayers.

Julie

Every minute counts.... said...

Things will get better. I have seen it happen. I can think back to times like the ones you have mentioned and they are fewer and fewer. They still happen but I think we have all adapted to them much better. I think it does help us out that Abi is the youngest. The older children have just learned to stay out of her reach :) someone younger just doesn't know how to avoid like the older kids do. They even avoid situations that will set her off.We just have all learned what it takes to make it work.It is by no means easy or what we would choose most of the time but the old saying " pick your battles" comes in to effect way too often at our house. Thankfully this last year has gotten sooo much better. We have gotten into a routine and stick with it as much as we can. Very few changes and being able to have that much needed down time at home with no one to over stimuate her makes a world of difference. Abi could not handle a full day of being around other kids. Somedays 2 hours is too much. So that is what we do. Most people will tell you to just make them do it, most people don't have kids like ours:)
On a happy note, I just recieved an email and Lindy is coming to the petting zoo with us too:) I can't wait to see Payton and Lindy together again,and to have Abi in there too, yeah!!! Matan will be in Texas that weekend :(
You are wonderful parents, don't doubt yourselves!!!!
Love ya,
Noel

Connie said...

Hi, Tara. I can't say I can relate because Lauren is so young, we haven't had behavioral issues (yet). But I can imagine how difficult it is. I am sure it will get better! Hang in there. You are doing a great job. And don't forget to take time for yourself!

Penny said...

Tara,

I truly think you will get some answers at the Developmental Pediatrician. I really do. We have a totally different child now. Keith is so much different now. When the anxiety is gone, he is so peaceful and happy and life is so different for all of us. There is hope. Please try and hang in there. I swear there is hope. You are NOT alone. I will talk to you anytime. Please feel free to email or call me

Nancy said...

Now that school is almost over, I am so depressed about being isolated at home with Erik that much more. I know how you feel, because I am really nervous about it.

Hang in there. Call me anytime.

Amy said...

I am not able to relate on the scale you endure with Payton, but I certainly have fallouts like you explain due to "mixing it up" too much. When Avery was younger I used to dread vacation time with her because it was so much work and stressful with no one to help. It feels awful to be like that, I agree. There are days now that I take off work and take Avery to daycare so I can have a day of errands without impacting her mood or sleep issues. Now on the weekend I keep it super low key because it is so much better for her and I am learning to find ways to be content with it too. I am now a Netflix member so we have new movies to watch all the time, and I will download new music a lot to have on hand, we walk A LOT. We have two parks by the house, and I will also cook dinner more while Avery plays outside on the deck. The downfall is that at some point, this all gets old and I get stir crazy, I deter from the routine, and then I have to deal with the fall out.
xoxo
Amy

sara said...

Tara, as you know, I struggle with nervousness about being home alone with the girls. I notice every Sunday evening that I worry about the week that lies ahead with Danny going back to his long work days. I cannot imagine how nervous I would be if I had to worry about one of them having the emotional outbursts that Payton does. I'll be praying for you. Also, I'll bring my girls out tomorrow morning so that they can play outside together and we can visit!!! That always makes me feel better. :)

Tes & John said...

Tara you and Bob hang in there. We truely know how you feel. The sorrow we feel is so deep when it comes to our WS kids. It will get better, like Penny said a developmental pedi could help. Take care and a big hug to you all. Lila's mommy

Heather said...

love you Tara! Hang there. There are always ups and downs, but we always make it through and come out stronger in the end.

Katie said...

((hugs))
Never doubt yourselves, you are great parents.
xxoo