Tuesday, December 13, 2011

"Help please"

Pumpkin continues to make small amounts of progress.
Very small amounts.

However, I do try to work with her therapists so I can reinforce the things they are doing. Because honestly, she can work and work and work during therapy 2-3 times a week. But if the skills don't transfer over to home life...they are worthless.

In the area of the country where we live things are done differently. I'm not sure if it's because of the culture. If it's because of the poverty level. Or if it's because of Medicaid in general. Where I'm originally from – early childhood therapies are done in the home with the parents present. Because...including the parents in the therapy sessions ensures that the same message is coming to that child from all parties. However, where I live now – the therapies are done completely separate from the parents. Every six months the parents go in and speak with the therapists (almost like a parent/teacher conference if you will). But by and large, as a parent, you have to push to find out what your kid is working on in therapy. And since Pumpkin is basically non-verbal, she can't tell me anything.

I requested the most recent progress notes so I could pass them along to the lawyers before our next court hearing. When that dingbat of a lawyer was talking to me about Pumpkin's lack of language, she questioned what was going on in therapy. I offered to get her progress notes.

Anyway, I noticed in the notes that Pumpkin has been working on stair climbing.

Well, no one had told me this. For the past 11 months I've been having Pumpkin crawl up and down the steps because I thought it was the safest thing to do. She is very unsteady on her feet. Little did I know that she was doing well with walking up and down steps in therapy.

We have a two story house. I could have been working with Pumpkin on the stair climbing every single day – instead of the 2 times per week she gets at therapy.

After a special phone call to go over these details with her therapist, I am now helping Pumpkin walk upright up and down the steps. I know what her strengths are and what to look for to help her be successful. (For example, I need to watch her feet to make sure she lowers her right foot first when descending. Her left foot is much stronger and can support her weight but sometimes she mixes up the correct foot pattern. By watching her and correcting her feet if necessary, she will eventually learn how to go down without assistance.)

I also had a conversation with her speech therapist. Pumpkin is capable of more speech at home than what she uses.

For example, we spent MONTHS teaching Pumpkin to say "more" or "all done" when she looked like she was finished eating. Literally – it took months to teach her to do this. Now though, she will point to a section on her plate if she wants more food and say, "this one". For the past couple months we've been thrilled with this and we would give her of what she pointed to.

Now though, I want to take it to the next level. I want Pumpkin to say "more meat" or "more bread" (for example). I don't expect her to be able to identify the food off the top of her head. But I do want her to repeat me. So now, if she says, "more" and then points to a section and says, "this one", I will hold up the food she wants and tell her, "OK Pumpkin. You want more fruit. Say, 'more fruit'."

I spoke in detail with her speech therapist. She agrees with me that Pumpkin is very capable of this level of speech. She too feels that when Pumpkin chooses to not repeat a command (like saying "more fruit" if she does want more fruit) that it is willful on her part. She can repeat things. She's learning more and more nouns and verbs in therapy. And if given the verbal prompting, she can do this.

Pumpkin is refusing to repeat what we say. She will finish her plate. I will ask her if she wants more. She will point to a section and say, "this one". However, no matter how hard I try, she will not repeat the actual name of the food that she wants. So, she doesn't get it.

I will move the food she wants back to the middle of the table. I will then ask Pumpkin, "Do you want more? Or are you all done?" Rather than say the name of the food she's requesting, Pumpkin will choose to say, "all done".

Maddening I tell you. Simply maddening.

However, I know that she is getting enough food the first time I fill her plate. She won't go hungry. And she does need to learn how to ask for the things she wants and needs. But the progress is so incredibly slow.

I'm also trying to get Pumpkin to say, "help please" when working on an occupational or physical task that she is having a difficult time with.

Again, Pumpkin is refusing.

I had her putting on her nightgown the other night. I lined it up and put it partway over her head. Pumpkin knows how to pull the nightgown over her face. She also knows that she needs to push her arms through. She can usually get the first arm without any problems. But that second arm is difficult for her. She often sends her arm out the neck hole or just pokes it against the fabric when she can't quite hit the arm hole.

She sat there frustrated beyond belief. I simply stated, "put it on" over and over and over and over. She would look at me with her eyes all confused because I wasn't helping her. So I would say, "Pumpkin. You need help. Say, help please and Mamma will help you. Say, help please."

She refused!!

Eventually, after tears. Crying for her mommy. More frustration and confusion. Pumpkin got her arm through on her own. She absolutely refused to say, "help please".

This morning, while walking down the stairs Pumpkin got to the last stair and couldn't figure out how to reach the floor. The handrail curves a bit at the end and she didn't feel comfortable holding on to that to step down the last stair.

I looked at Pumpkin and told her, "Pumpkin you need help. Mamma will help you. Say help please."

She refused!!

Again there were tears. Again and again I gave her the verbal prompts. She refused to say anything. Instead, she struggled and twisted until she felt safe enough holding on to the end of the staircase wall to step down on her own.

It sounds so harsh to say that I'm refusing to give my kid food and I'm making her walk on her own (when it's difficult for her to do those things). But somehow I've got to help her learn and grow.

Slow progress. Very slow progress indeed.


MamaFoster said...

i don't see what other choice you have. you are trying to help her be able to function as well as she can in real life. i would just keep doing it until you find something that works better.

Acceptance with Joy said...

When we got the twins at age 6 they were not talking much either and not wanting to. I know how it is!! I persevered just like you are and I want to say it works... She'll get it.