We have a lot of goals for Harlie. There are lots of things we are always working on.
For example - eating, speaking, wearing her speaking valve, using her signs, maintaining eye contact during "conversation", using her communication device, listening, answering questions, saying good-bye and hello appropriately, using the potty consistently (we're there with occasional accidents), walking up and down the stairs independently and improving her gross motor skills. Just to name a few.
Now that she is four years old, I think I have finally figured out that it is better to tackle one major issue at a time. I mean, we still work on a lot of those things no matter what (like eating, or saying good-bye and hello) but the major things (like potty training or wearing her speaking valve) must be done one at a time. If I try to accomplish several of the major things at once, she fights me on everything. Even the little things. And then we are all miserable. At the end of the day, I was happy because I really believed I was doing all I could. I was fighting the good fight. And I would eventually, win, right?
Well, forget that. All I ended up doing was making her not want to spend anytime with me and wearing myself out in the process.
So, in light of recent potty training "success", and our feeding issues - I have put her speaking valve goals on the back burner. She wears it at school for her teachers, but won't wear it at home. Fine. I don't care. She's wearing it when it's most important, so it's still a win as far as I'm concerned.
Except for the fact that during the entire Christmas break she didn't wear it once. I did attempt to put it on her a couple of times - but she immediately took it off. Oh well.
So, today she goes to school. She puts it on while there. And right now it is 5:20pm and SHE IS STILL WEARING IT!!! She's worn it while coughing and she wore it during a wonderful feeding at 4pm.
Of course she's had an accident each day for the past three days in a row. And she is perfectly capable of being accident-free.
She is so hard to figure out.
Subscribe to:
Post Comments (Atom)
Liver Update
Well, it's been like eight months since my last blog post. I started this post back in February. I think I'll just start with what I...
-
These past few weeks, my thoughts have been consumed with Murphy and his struggles in first grade. His teacher and I have spoken numerous t...
-
Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it&... -
Hi. I've started this post several times. I get overwhelmed and put it down. I mean, if I get overwhelmed, how the heck are you going to...
6 comments:
That stubbornness, that is so frustrating in a preschooler, will one day serve her well! She is going to need perseverance and a strong will to scrap her way through the world when she older. I think you have wisely chosen to pick your battles! I love reading about you and your family. (Long time reader, and rarely post)
It is awesome you are writing all of this down bc when one thing is up, another is down. In a few weeks you can look back and see how far you've come and you'll be amazed!! Way to go... She's so lucky to have a mom who's pushing that "to-do" list. xo
We've started focusing on one area at a time too. Some weeks we hit pt hard, other weeks it speech, other times its feeding. It's way too hard, not to mention stressful when you try to do it all at the same time when you're dealing with multiple disabilities.
My new mantra....baby steps!
Need toget together soon!!
Haha I'm sorry to laugh, but these kids! They sure do like to play by their own rules. :) I often remind myself that it's a GOOD thing that Emily is stubborn. It's what makes her a strong fighter. :)
Wait until she is a teenager! :)
I so totally understand your frustration. Every day we love them, but some days we don't like them so much.
Hang in there ........
Managing multiple areas of "disabilty" is tough. Oh do I feel your pain. I agree that Harlie's toughness is going to serve her well. She will get there in her own time and in her own way. You are smart to try to enjoy life along the way. Trying to do to much, while also impossible, is tiring for everyone. I know I want to look back on my life and know I did the best I could for my child but I also want to look back and feel like we enjoyed our life and Ainsley's childhood.
Post a Comment