Not A Role Model Mom

Throughout Kayla's eleven years I've often had people remark to me with some variation of the following expressions:

"She is doing so well, you must work with her so much at home."
"She's doing great, it must be what you're doing at home."
"It really shows that you work a lot with her."
"So much of what she's doing is because of what you do at home."
"It's obvious you do a lot with her."

As I'm wondering what their definition of doing 'so well' means, and what ideas/expectations they had of what they expect someone with Down syndrome to be doing, or not doing, I smile, through gritted teeth, and swallow the guilt bubbling up inside of me. I feel like an imposter accepting these accolades.

The truth is: I'm not "doing" that much with her at home. The truth is: I am not a role model parent to look to when it comes to raising a child with a disability. The truth is: There is so much I could be doing better with her. The truth is: I haven't done anything above and beyond.

I don't have much confidence in myself as a parent, much less trying to be a teacher and therapist too. So I don't teach (often, or that well), and I don't stay on top of therapies as often as I should. Instead, I just try to stay afloat with this parenting gig.

I have always found it not so easy to try and "do things" with Kayla - you know, those educational things to keep her on track and progressing. Even when she was a toddler I often became flustered and I guess gave up easily. I don't make up flash cards or turn everything in to an educational game. I don't stay consistent with reviewing math facts.

I became overwhelmed at all the products aimed at kids with disabilities. Not only was it overwhelming, but it can be expensive. I looked at numerous reading programs but always balked at the prices and thought I could just recreate my own at home; except I never got around to doing that.

At our first NDSC Convention in Boston we bought a DVD of school readiness activity type things, but that meant we would have to print off all the pages. And there are a lot of pages. Pages and pages and pages. Joe printed off several of these units but at the time they were still a little advanced for Kayla. Then he deployed and they got packed up to storage. By the time we got them out of storage and thought about them again she was beyond those skills.

I bought the Numicon set, but I think I must've bought a very basic set (expenses you know!) because I don't have any big handbook of activities or how to really use it successfully. I have a small fold out activity booklet, but I know there is more to it than that. So it sits, hardly being used.

Once Kayla started school it became even more difficult to "do things" with her at home. When she comes home from school she is done. Throw in after school activities and therapies and time is even more limited.

At one point Kayla was going to vision and speech therapy 2x a week each after school. Girl Scouts 2x a month, Drama Club 1x a week after school, and Running Club 1x a week after school (although not the whole year).

We are supposed to do 'home exercises' from speech and vision therapy activities. In theory this shouldn't take long. We can squeeze in 10-15 for each therapy several times a week, right? Not so much.

After school she wants to unwind. I get that. She needs time to let her mind be free of all that learning. She wants to be upstairs or outside playing. And I let her; I let her play. But it is not easy to reign her back in and tell her she has to stop playing so we can do x,y,z. And then if we get one thing done I have to let her take a break and then go through the process of reigning her back in again. Outside for 30 min, inside to work on things, back outside for another 30 min? It simply doesn't work that well.

There are speech and vision activities, reading every day, general reviewing of information from science/social studies, study for quizzes/tests, attempting to do math, practicing handwriting. It feels like a constant, "Kayla do this, do that, we've got to study this, let's work on that, sit down and do this."

It seems like there should be enough time to do a little bit here or there, but it never works out that way. 15 min of vision exercises can turn in to 30 min after counting the time it takes to convince her to do it and go sit at the table, after all the breaks in between for being distracted, for fidgeting, for getting some water, for going to the bathroom. That's the same for anything structured we try and do. The process takes so much longer than it should.

If I feel overwhelmed and stressed at the constant "let's do this and this and this and work on this and this and this" how must she feel as the one being told to do all that?

Sometimes I feel like she must think that's all she hears. "Corrections to her speech and tongue placement. Time to read a book. Let's do Xtra Math on the computer. Let's review notes from science and social studies. Count by 10s. By 1s. By 5s. Let's do the multiplication game where you get the guy to climb the mountain. Read your phrase book. Work on your speech exercises. Get out your vision therapy glasses and let's do the number chart. You should practice writing some words." and on and on and on it goes.

She just wants to be a kid. She just wants to play. She just wants to be free to do what she wants to do.

And most of the time I let all the other stuff go and let her be a kid. Most of the time she plays outside longer than I intended because it's a nice day and the other kids are out and I don't want to call her inside to do more work or therapy.

So no, I don't do much with her at home. I don't drill her. I don't make flash cards. I don't make up games to work on skills. I try to introduce things, but am usually met with resistance and I don't want everything to be a fight.

We do what we can every night, but I know there's a lot I'm not doing. I wonder how much "better" she could be doing if I were more consistent. It I were a better teacher and therapist. If I just knew how to do things with her.

But I want her to enjoy her childhood, too.

 

Magic Marker Monday

Kayla has learned to make more letters of the alphabet - enough that she can start writing more words than just her name. It happened when I wasn't even looking! One of her homework assignments was writing some sight words that she found in a book; and using letters that she could form we came up with these 6 words.

Except for the "e" in "went" she made all the letters herself, without hand over hand guidance. Now a couple letters I did have to erase and have her try again, but she did, and the words are actually decipherable! (The first word looks like 'with' because of the lines, but its actually 'will' and I drew the line to separate the words 'can' and 'play').

I'm so excited to see how far she's come and can't wait to see what the next year brings in terms of handwriting!

You can click on the image to enlarge it.

Progress Report

I've mentioned before, here, and here, the struggle Kayla has with writing letters and her name...but that she's been working hard at it in school.

One of her IEP goals states "Given a verbal prompt, Kayla will write her name in 4 of of 5 trials with 80% accuracy."

The objectives are:
1. Given a model, Kayla will trace her name in 4 out of 5 trials with 80% accuracy.
2. Given a model, Kayla will copy her name in 4 out of 5 trials with 80% accuracy.
3. Given a verbal prompt, Kayla will write her name in 4 out of 5 trials with 80% accuracy.

In Oct she had her first progress report.
Progress Code: Making sufficient progress to meet goal.
Description: "Based on daily writing samples, Kayla is developing handwriting by tracing her name with teacher encouraging her to stay on the ditto lines. She needs physical assist to form the correct motor pathway of the letters. She is improving, but the letters are not always recognizable."

Jan was her second progress report.
Description: "Kayla is now writing her name consistently with 80% accuracy. Some of the letters continue to need refinement, but with practice legibility is improving.

Progress Code: Achieved

She's achieved this particular goal on her IEP! Her legibility of some of the letters still does need some improvement, but what progress she has made over the past few months!

And it is the only goal 'achieved' on her IEP (so far!), but I'll take it! She still has 3 more months to achieve some more of her goals :)

I'm just so happy to see the progress she is making with her handwriting...something I worried a lot about last year.

Everything happens in time; I just need to be more patient!

Handwriting Update

I've mentioned before how having low-muscle tone affects Kayla's fine motor skills; especially tracing and writing.

She still struggles with tracing letters - how to stop and start again and lift up her pencil instead of making continuous lines or loops. Sometimes the tracing she does over a letter looks nothing like the letter she was tracing; other times it looks pretty darn good.

The special ed teacher works with Kayla on tracing, but she is using the 'dotted/dittoed' letters and in the parent-teacher conference I mentioned to the regular ed teacher that I didn't think that was the best way for Kayla to trace/learn. I think the dittoed letters are too 'busy' and not easy for Kayla to follow along, and she agreed, so hopefully they won't be using that anymore.

While the OT is still using Handwriting Without Tears (HWT) worksheets with Kayla it hasn't quite been incorporated for Kayla in the general classroom setting yet; so I'll be sending some info to her teacher so she can start using that with Kayla too.

The school district uses D'Nealian style handwriting. The instructions for forming some of those letters are so long! Example for a lowercase 'd': Middle start; around down, touch, up high, down, and a monkey tail. Uppercase "B": Top start; slant down, up, around halfway, close, around again, and close. Kayla is supposed to memorize these little ditties for each and every letter so she knows how to form them correctly? I wouldn't even be able to remember these every time I was working on making letters with her!

For contrast here is how you would verbally cue writing those letters with HWT; lowercase 'd': Big line down, little curve. Uppercase "B": Big line down, jump to the top (to remind her to lift her pencil and bring it back to the top), little curve, little curve.

The other style has too many instructions on forming each letter; Kayla needs something short, concise, clear, and to the point...not all of that 'extra' wording.

Despite using HWT with the OT, dittoed letters with the special ed teacher, and D'Nealian style with the regular teacher, Kayla IS making progress! It's been very exciting these past few months watching her get closer to writing her own name.

This paper was done at the beginning of June, near the end of the last school year. The note says this was done free hand, by herself, with only verbal prompts from the teacher. This was the first time she wrote out letters that closely resembled her name.


Last week she wrote her name on this drawing (after much gnashing of the teeth and stubbornness on her part - ie when I told her to make an 'a' she just drew a line down - so numerous erases and 'try agains' she finally completed this). The letters aren't so big as in the example above, so she's starting to get the size and spacing down.


I was so encouraged to see in just a few months how far she's come in writing her name independently. Now she doesn't do it like this on a consistent basis yet, but it's coming along - and showing progress is what matters!

I know she has a ways to go still, but I'm excited to think of the time when she's writing sentences and stories and letters...and once again I'm reminded that she'll do it, in her own time.

Handwriting

One of Kayla's weakest areas is fine motor skills - more specifically - handwriting. She has struggled even with the concept of tracing; her lines just would not follow the other lines.

She has the correct pencil grip, but I can see that her hands are just weak. She's had trouble with wrist rotation and stabilizing her arm to print.

Several months ago she just could not trace letters...it seemed as if she just couldn't make her hand do what she wanted it to do. Instead she seemed to want to color in the lines instead of tracing the lines. It was discouraging watching her trying to trace because it felt like she would just never get there.

Over the past few months she has made significant progress in this area. She is now able to trace with some accuracy and I'm amazed at the difference. I should have saved some of those earlier papers where she 'attempted' to trace so I could compare to where she is now.

But trust me when I say she could not do this just a few months ago. (This is her tracing over her name that I wrote, not her writing free hand by herself).


She can independently make an L, T (although after making the T she likes to turn it in to an I), and sometimes H, E, and F.

She obviously practices K a lot to prepare for writing her own name. Several weeks ago she was working on the little chalkboard and produced this - needless to say there was a lot of cheering going on.

Make video montages at www.OneTrueMedia.com

She is still a long way off from writing independently; and struggles to make her K on flat paper (instead of the boundaries the chalkboard provides) but she knows the basics of how it should look and makes the right amount of lines - it just comes out looking more like an F instead of a K.

I'm just happy to see the progress she's making and knowing she is finally tracing letters now...she'll get to writing eventually and there will be a big celebration when she does!

1:1 Update

The bottom line is they don't feel Kayla needs a 1:1 to shadow her throughout the whole school day; so they will be getting another classroom assistant to help Kayla during those times the teachers felt she needed the most individualized attention.

Her teacher was asked how things were going during times like library, music, & PE and she said as far as she knew there weren't any issues. If there were no one has mentioned them to her. So they felt Kayla did fine in those settings without needing a 1:1. They didn't think she needed one during lunch, or recess...except at the end. When they blow the whistle I guess Kayla pretty much ignores that LOL The teacher said someone was always having to go get Kayla and bring her in line which would make them late for computer lab. So this assistant will go round Kayla up right before they blow the whistle (they should have been doing that before if it was making them late).

One of the therapists asked if they were using the buddy system and the teacher said "oh yeah, they all want to be the one to hold Kayla's hand!" So the class leader for the day gets to do it and she said that helps Kayla stay in line when walking with the class (she tends to wander!)...and Kayla does have her turn being class leader as well. Her teacher said she does everything the other kids do, and in fact she just loves to hear Kayla recite the Pledge of Allegiance, said she gets a kick out of hearing her say it.

So it seems like they might just need this extra assistance when Kayla needs to be sitting at her desk concentrating on whatever work they are doing. If someone isn't right there with her she'll just get up and do her own thing. Having someone make sure she's doing what she's supposed to be doing will help.

The meeting wasn't without a few frustrations though.

In May when we did the initial IEP I asked about them using some sort of weighted item to see if that would help Kayla sit still, or stay in her chair for longer periods. I don't know if Kayla definitely has any sensory issues, no one has ever mentioned it, but I do wonder about it. I've heard having a weighted item can help kids settle down and not have to constantly get up. I was told they have some weighted items shaped like animals that can go in a child's lap but they had to have permission to use them; so I gave permission. It was put in her IEP. But no one has used this yet. I wonder if she's so fidgety and can't stay in her seat then why haven't they at least tried to use one to see if it would help? So that was brought up again.

Last year during parent/teacher conference I asked the OT assistant (the one who actually works with Kayla during school is different than the OT who goes to the IEP) if she was familiar with Handwriting Without Tears. She said they had it but she wasn't using it with her because Kayla wasn't ready for it. Huh? I thought the whole point of the program was to get her ready to write. I found out later that OT only knew about the Kindergarten workbook and not the preschool one.

So I asked the OT who was in yesterday's meeting about that program and she said yes they have the preschool one and yes they could see about starting it with Kayla.

Right after that her teacher mentioned they have a 1-hr time block for "writers workshop" and she wanted to know what she should be doing with Kayla during that time since she can't write. Someone (not anyone in the meeting yesterday) had told her to let her color during that time. Umm...no! She isn't going to sit there for an hour and just color. She already knows how to color so she isn't going to be learning anything further by just coloring. Her teacher said she did spend some time with her during that period going over writing the letter K. I know the teacher can't spend the whole hour with Kayla, I know she has to go around and spend time with each of the other kids as well, but Kayla isn't going to benefit by being allowed to color for the rest of that time (as much as she does enjoy it!).

So I'm thinking this writers workshop is the perfect time for someone to be working on the Handwriting Without Tears program with Kayla. The OT asked her teacher if she gave her some papers and handouts from a writing program could she use that with her during that time. But the program is more than just using papers and handouts - there are other materials that go along with it. You can't just give the teacher these papers and expect her to know or understand how the program works if she's not at all familiar with it. They have workshops for teachers to learn how to use it. We bought the program when we were at the convention in Boston and I still don't understand how exactly to implement it with Kayla, but I'm trying to work my way through the workbook and different activities.

I'm thinking the OT assistant that actually works with Kayla could come in the classroom during that time and work on the program with her. Right now she is pulled out for 1:1 with the OT for 1/2 hr 2x a week. I think we need to amend that as she is really behind in fine motor skills and learning to write. They'll have to check with the OTA about changing her schedule around to see Kayla at the time they do the writers workshop.

I also suggested they try using a timer...ie..."Kayla you need to sit here and work on x,y,z until the timer goes off, then you can do x,y,z." We've started using it during dinner when she wants to leave the table constantly. I set it for between 5-10 min and tell her she has to sit at the table with us and when the timer goes off she can get down. It seems to be helping, so hopefully they'll do that in school too.

At the end of Sep we have parent/teacher conferences...I'll ask how things are going during the writers workshop and if need be will call for another IEP to amend it so the OT is in the classroom working on that writing program with her.

I also found out they hired another Kindergarten teacher so they will be taking students from the 3 current classes and making a 4th one. Kayla will stay where she is, but at least the class size will be a little smaller.