Monday, December 9, 2013

Progress...and "Not Making Progress"

I have really been struggling with something for over a month.

At first I thought I was just feeling sleep-deprived, overwhelmed and moody, but then I realized... no, that's "normal."

This was something more. I have been really down.

I think it started with a short conversation I had with a therapist who has worked with Lilli for several years.

She told me in the beginning of November that she will probably discharge Lilli from her therapy services, because Lilli "is not making progress."

And I just cannot get past it.

I am so hung up on those words, "not making progress," it is driving me crazy. I usually let those types of comments roll off. I have tried to understand her point of view. I have tried to think positively, that sometimes change is a good thing.

This is not a defining moment for Lilli. Of course she is making progress. She has always made progress in some way. You just have to step back further, and look at the big picture with Lilli. She takes a very long time to learn how to do things. Her progress is so slow that sometimes it is like trying to sit and watch the earth turn, or watch a seed grow into a tree. But she IS making progress.

I am not angry with the therapist. I think that she is great. She has done a lot for Lilli. Over the past few years, she has been very helpful and I have a lot of respect for her and her work. I guess I am just now learning that sometimes, therapists think that if there is not enough progress being made within a certain period of time, it's not really worth it to continue working with that child. Sometimes people "plateau" in their therapy, and they get stuck in a rut doing the same thing each week, not moving forward.

I told the therapist that I strongly disagreed about discontinuing therapy, and that I feel that it is very important for her to keep going. Lilli has learned to do a lot of things, but she has SO far to go.

We still feed Lilli with a utensil after almost ten years. She can pick up a sandwich by herself now. She can pick up bites of food and feed herself with her fingers. But she cannot use a utensil. She can't "stab" food. This is a skill she has been working on for many years. If we sit next to her and stab every bite for her and hand her the fork, she will put it in her mouth and put the fork down. (Hey, that is major progress from the days of throwing the fork across the room, trust me.) But how long does a therapist work on a skill until they say, "Well, she can't do it, and we've been working on it for X amount of time, so we are going to just give up on that one."

Does this mean I will be spoon feeding Lilli for the rest of her life? The therapist says she has been working on it for months, and she is just not able to use fine motor skills to turn a fork with her wrist and stab a piece of food on a plate.

I look at stabbing a piece of food on my own plate in a new way, for the first time in my life. What a tiny thing I take for granted.

I guess if I knew for sure that it would never be possible for her to learn to use a utensil, I would deal with it and eventually be OK with that fact. But I am not convinced that she is unable to learn how to feed herself. I think she can learn to do it. It might just take a very long time. This is not the only skill Lilli is working on with the therapist. There are others. The progress has been incredibly slow, creeping along over the years.

I guess too slow.

I think this is one of my biggest challenges as Lilli's mom. How hard do I try? How long do I push or wait for something to happen until I give up and learn to accept things for how they are? Where is the fine line between faith, helping, advocacting, working hard against all the odds.... and denial? When does a "goal" for a special needs child officially get checked off as "unattainable"? When do I allow myself to stop trying so long and so hard?

I think the answer is never.

But I am new at this. Guess I should ask another special needs mom who has been there for a long time.

I don't want to feel like we are giving up. Not now. I have put so much effort into getting her to this therapy for several years. Every Monday, getting Lilli to this therapy is a three-hour chunk out of our lives. I want some tangible return. And I do have some. I just want more.

Our therapy schedule is nuts. Monday is only one day out of six days straight of therapies.

Our therapy schedule for Lilli and Josh. Oh, Chloe's on there once, for dance class.
Everything else is school and therapy. I must look at this every day, even after all this time.

On Mondays, Lilli's homebound teacher wraps up morning school at our house, and helps me get Lilli ready and into the car. I go pick up Josh from his special needs morning preschool class, and we drive a half hour to the clinic. They both always fall asleep. When we get there, I wake both of them up, put their shoes on them, maybe give them a few bites of a snack, and walk holding Lilli's hand while often carrying sleepy Josh and two or three bags of stuff. One of them always tries to run away from me.

Always. I keep thinking that one of these days, Josh won't run.

I don't know about Lilli. I have to tell myself that she is blessed to be able to run at all. But honestly, I do not think these positive thoughts when chasing her in the busy parking lot.

I have chased them in the parking lot and in the lobby many times. (Yeah, we own a "kid leash." It's not that great and they are too big for it.) I just try to always have a good grip on their hands, with bags slung over my shoulder. Always, I wish for a magical person to suddenly appear and say to me, "Oh! Let me help you!"

But it never happens.

Up we all go in the elevator to the second floor. The door opens and I chase them yet again. Someone always has to go potty. Into the public bathroom with the special fold-out potty seat (hence one of my bags) for Lilli for 10-15 minutes of "Don't touch that! Stay here!" and holding Josh up to the sink to wash his hands while making sure Lilli does not wander off or touch anything.

Trust me, I have asked myself many times if it was really worth all this effort. And every time I thought about it, I always came up with the answer: yes.

Yes, it is worth it.

Lilli has therapy for one hour, while I keep Josh entertained/corraled in the waiting room with snacks and toys. I shake off the feelings of being a bad mom while I check my email on my phone and Josh watches Disney Junior. I could play with Josh or read him a book, but I don't. I need to chill. Then Lilli comes out and I herd them both back to the elevator... the lobby... the parking lot... the van.

We drive the half hour back home, where I make them lunch and get ready for the next therapist to show up at our house.

It's not easy. I do not enjoy it. But it's a big deal to me. It is worth it. I do it because I think it is important. It's good for Lilli. She needs it. She enjoys it. Can we live without this therapy? Sure we can. It would not be the end of the world. But I just think she benefits from it in many ways.

I do the same thing the next day all over again, with Josh. Josh has one of his therapies at a clinic on Tuesdays, also a half hour away. Each day is a new day of therapies and driving for my children can get help from someone else besides me. I cannot do it all. I need help, and I am not too proud to admit that. The running around is exhausting. Some parents choose to do it all on their own. Either way, it's hard. I choose to have a team of people involved because I like teamwork. I love ideas other people have. It's good for my children to have new faces and fresh ideas and activities, because I get burned out.

So when the therapist told me she will wait until after the holidays to see if Lilli makes any progress or she might discharge her, it just filled me with such a sense of defeat. Because it takes such effort to even get there each week. I guess I can't explain it any better than that it feels as if I spent a ton of time going to practice, only to be cut from the team. (I know I am sounding dramatic here. Sorry.)

Instead of being strong and level headed, I just sort of crumbled. I have let negative thoughts creep in. Unwanted phrases have been haunting me.

None of this matters. It will always be the same. She's not making progress. All of this hard're in denial.

I stand in the bathroom, while changing her, and in my head I hear, You've been potty training her for six years. It's still the same. You're being ridiculous, chasing a dream. Give it up.

I sit at the table feeding her, and I wonder, should we keep trying? Will she ever get it? Maybe I'm not trying hard enough. Maybe I should do it differently. I'm not being consistent. I need to try harder.

I want to tell this therapist that her words have absolutely crushed me. It makes me feel like all of my help and efforts and hope and goals for Lilli...don't matter.

"Not making progress."

I could cry again right now just thinking those words.

But it isn't true. I will have to battle this phrase right out of my mind for the next several weeks and banish the negative thoughts that came attached to it.

These words haunting me, combined with the challenge of Christmas coming, that's where I am right now. I shared with my sister that I've been struggling. She suggested that I write. So here it is. I am making myself write.

Maybe it will help.

Because when I write, I reflect. I remember. I see things in perspective. I look at the dozen or so posts that I have not ever put on the blog, and I think of all the ones I could write, about things that are exciting and hopeful to me. It is tough, trying to be hopeful all the time. Trying to see progress when someone tells you there isn't any. Trying to look at strengths when there are so many weaknesses. Trying to focus on what is important.

Words are very powerful, and teachers, therapists, and doctors have an incredible cabability to completely form or change a person's perspective. When a professional tells a parent something negative, it might take dozens of friends and family members weeks or months to undo that negative seed that was probably planted carelessly. Weeks of encouragement and "Don't listen to them" comments to try and undo the damage of the "professional opinion." Months of questioning, is this right? Is it worth it? and wrestling with doubt.

I guess my hope with this post today is that it will remind those who work with parents to be very careful with their words when talking about a child.

Always give hope.

Not false hope, just some hope.

As always, I will be truthful with this therapist. She knows that I am disappointed. I do understand her reasoning, even though I do not agree. I will just have to get past this and focus on other goals.

We will get through the month of December, and then...we will see. I am feeling a little better from writing all of this out. But I am about to post this, and it is a rainy Monday morning. In a short while, I will be walking through the rain with a tight grip on two squirmy children in a parking lot with three bags.

Trying to stay positive.

Trying to be hopeful. keep trying.