Laila has gone from crying about everything to basically refusing. The past two days at school she has either found her way to cheat out of what she is doing or just basically turning into a limp noodle and refusing. Since I'm not there I watched her this morning and they have chairs on either side of her so she doesn't fall and she just leans her body against one instead of sitting. When I try doing any walking or standing with her back at the house she just screams and draws her knees up refusing to touch the floor. Ever had your kid go limp and refuse to stand when they are throwing a fit? Try my life almost constantly every day. Dead weight. Here's my problem: knowledge. Knowing that Laila is able to do these things but chooses not to is infuriating. She did the same thing when we were bringing her to feeding therapy once a week all the way to Indy. She does something for a little while, excels then decides it's too much work and gives up. She had to go back on her g-tube again yesterday evening because she refuses to eat or drink again except for small amounts (again, I warned you about the negative today). I want the best for her but I can't do anything about her not wanting it for herself. I keep thinking about the fact that we were originally supposed to be going home next week and I'm glad that we have the extra time because hopefully that will help her understand and do better before we go home. At home we don't have the special tables and chairs and all the equipment they have here and she definitely doesn't have a patient teacher in me.
I wonder about all this. If we were home and she was getting therapy somewhere else five days a week, five hours a day, would she be making progress there and I could be at home? Jack wonders if therapy even helps at all. She didn't have any therapy over the summer and really gained a lot of skills. The one thing that I keep falling back to is how special it is that they are specialized with kids with CP. They are not thrown into a classroom with kids with seven other disabilities with one teacher and a few aides to try to do class in a way that works for everyone. I'm guessing the thousands of dollars we're spending in tuition and housing and sacrifice that my husband and other children are making has to be worth it or why would anyone do it, right? The problem is that a lot of the families live here and their kids actually go to school at CLC and get to continue their treatment all the time. We have a short time here and I wonder what will be able to transfer back home. I'm sure they have a plan for that and I pray that I'll eat all these doubtful words in the next couple of week but for today......pity party it is. Don't judge me till you walk in my shoes.
*to her therapists and teachers here and back home, sorry. blowing off some steam today*
5 comments:
Hey Angie!
I've been following the story since day one and will keep praying for you guys. I know I would be frustrated too! I am so proud of you and your family for always trusting in the Lord. I brag about the Hamstras all the time. ;)
Everytime I read about how Laila is doing or acting, I am constantly reminded of our relationship with God. How many times have I been capable of a deeper walk (and I take a few really encouraging, moving steps) and then I back out because it is easier? To me, your blog posts are devotionals.
I know this is a big sacrifice for your family and I'm really, really hoping that you see some definite changes! :) But until that happens, I think this situation calls for a VBS song:
"Be Strong Joshua 1:9! Be strong and courageous! Do not be terrified, do not be discouraged! For the Lord your God is with you wherever you go!"
:)
hey angie! lalia's behaviors are soooo normal! i refer to the cooperative period as the "honeymoon phase" (now compare your 1week honeymoon to your 11+yr marriage)she is also going through an "extinction burst" she has realized that expectations have changed so she is going through a phase of regression to test you and everyone else. continue to be consistent.
from what i have read with CP more PT/OT is always better, but it doesn't always have to be in a clinic, you jack &even emma & jackson can help.behaviorally u can trwat her just like you would any 3 yr old. in all your spatr time(haha) try reading the book "positive discipline" by jane nelsen, i think it will fit you and jack nicely,
also, it's normal to feel mad, frustrated and annoyed with your kids! it's part of being human!
love ya!
Angie, first of all let me tell you the devil doesn't want me to write this cuz I had it written once and it got deleted so I am trying again.(im not good at fb & blogs LOL) It was the perfect encouraging note & now I can't remember what I said :( Anyway, just remember you are such a person of faith that the devil is trying to interfer cuz you guys are doing so well. Just remember God is always by your side and today is just a glich, it will be better tomorrow. Laila will gain her strength from you and when you are feeling down she will see that and she will be there for you, she will be your pick-me-up :) Keep up the good work (p.s. I want to be just like you when I grow up LOL) Praying for you daily. Luv Sandra
Oh yeah, (im not sure if I said this the second time lol) just remember that the seed is being planted, even if she is being a little difficult when it is in God's timing, she will take off and you will then see she was paying attention and you guys made the right decision. You've already said you have seen signs from God that this extra week was the right decision. Hang in there. Again, praying for you all. Sandra
angie - you are allowed a pity party sometimes...or, even most of the time. when i think about the difficulties i face every day with my kids, you come to mind. even if you don't think you have patience or can't do it, you have to realize that you ARE doing it!
i firmly believe that God only gives us what we can handle - and He gave you that beautiful little girl.
it's easy to look at all of the negatives & have bad days. we are all entitled to them...but you would not believe how much you have encouraged me, even in your frustrations.
you are an amazing woman, mother & wife.
thank you for your transparency & your insight.
much love & prayers,
jenni (anderson)
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