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.

 

Creative Therapies

Two years ago I blogged about Lucas being a "speech therapist in training." I wouldn't be surprised if he does end up on a career path involving therapy!

After Kayla's first couple of visits with the vision therapist Lucas put some imagination into some 'therapies' that he created at home.

On a side note: I think Kayla is going through the beginning stages of puberty. I know! But the emotions! Oh my goodness. The littlest things set her off. She does this fake/whine/cry sound thing when she's upset over something; which seems to happen more often than not. Lucas has become really in-tuned to her feelings and tries to cheer her up or do things to distract her. One time in the car she was upset about going home and was going on and on with this cry and Lucas asked us to put on the song "Call Me Maybe" because he knows she loves that song. And it worked. She stopped crying and started singing along. He uses music a lot when they're upstairs playing and she gets upset he'll put on a CD so she'll start dancing instead.

One day she was just having a bad day. Moody. Emotional. You name it. I was upset with her about something. We were both getting frustrated.

I finally took a time-out for myself. Then I gathered her up in my arms and made her lay down with me on the couch to just chill out. She rarely does this and resisted at first. I just kept trying to talk to her and asking her to use words to explain to me what was going on. She finally relaxed enough to just be there with me on the couch.

In the mean time Lucas said he was going to draw Kayla a picture because he wanted to cheer her up and make her happy. He brought this picture over to us and whispered to me that it was also a "therapy picture."

The animals at the bottom of the picture are sheep and he wanted Kayla to pick out which sheep was different. I guess since hearing us talk about her convergence insufficiency he wanted to see if he could help her eyes work together.

Several days later Lucas was concocting something in the front room. When he finally told us we could come see it he said it was a 'therapy game.'

You had to stand behind something and throw the bean bags over the first 3 boxes and get them to land in the middle of the set of boxes in the back. He was so proud of himself.

He told Kayla she had to stand behind his line and she couldn't go OVER the line. Kayla looked at his line and followed his direction of not going OVER it. She went AROUND it instead so she could be a little closer when she was throwing her bean bags.

I love to watch his creativity develop - because I have none myself!
 
 

Life Is Therapy

The idea behind "Life Is Therapy" is "the idea that learning can and does occur most effectively through everyday life experiences at home and out in the community--for children with both typical and special needs."

Lucas is in the midst of potty-training (shhh...don't want to say it too loudly lest I jinx it!) and I'm doing the same with him as we did with Kayla - he gets two mini M&Ms every time he goes in the potty.

As I hold these tiny little M&Ms in my hand and he picks them up one-by-one he is continuing to refine his fine-motor skills. (ok he doesn't need a lot of help in that area now, but Kayla still did!) We also work on color recognition as he tells me the color of each M&M he picks up.

Visit Marie for more Life Is Therapy ideas.

Life Is Therapy

Life is Therapy - being outside on a nice day enjoying swinging! Swinging is a great sensory therapy tool - maintaining your balance and your body awareness of where you are in 'space.'

Looking at these pictures I almost forgot how little Kayla was back then :)





Visit Marie for more Life Is Therapy ideas.

Life Is Therapy

This weekend we went to the Calvert Marine Museum. The have a Discovery Room for kids with opportunity for imaginative and pretend play.

I sat back and let the kids decide what they were going to do and just enjoyed watching their imagination at work.







My favorite memory is when another boy was in the room playing with Kayla and Lucas; he kept talking about wanting to go get a Halloween balloon. After listening to him for several minutes Kayla looked at him seriously, took a couple steps away, reached her hands up in the air to grab an imaginary balloon, then brought it back to him and said "here you go" and he reached out to take the imaginary balloon from her hands.

Other fun things to do there were touching the starfish and turtle, seeing the sting rays and otters...and touring the lighthouse. I've never been inside a lighthouse before, so that was neat to see. This one was a larger lighthouse where a whole family lived...there were several rooms with little closets.






We climbed the steps all the way to the top and walked around outside in the fog...a day like this is when lighthouses sure come in handy!




Opportunities for discovery is a great example of "life is therapy"... visit Marie for more "Life Is Therapy."

I just realized these photos will fit my interpretation of the Crazy Hip Bloggers Take It Tuesday Theme of "Winter Blues"...we did get some snow a few weeks ago, and the weather has been too cold to do anything outdoors...and the kids were climbing up the walls. Sunday's forecast called for rain, so this is what we did to beat those 'winter blues' and do something fun!

Life Is Therapy - Roller Skating

Every once in a while Kayla brings home a flyer from the PTO about "Family Skate Night." I've never gone because I thought it would be a waste of time and money since Kayla's never even been on roller skates before - so what fun would that be if she couldn't participate?

Um, hello!? What was I thinking? Or not thinking as the case may be.

If I never take her, then how will she ever get a chance to try out roller skating?! And I remember going to roller skating rinks when I was a kid and loving it.

Ever since Kayla was born I've always been about providing her with all those 'typical' experiences and just getting out in the community and trying things and doing things.

So when the flyer came home in Dec I thought, "Why not take her? She might like it, or it might turn in to a disaster...but I won't know unless we go."

They had the plastic beginner skates that go over your shoes (why have I not bought these for her before? I don't know, I guess I didn't think she would have the balance or coordination for skating...I know what she's getting for her birthday now!)

We started off going around with me holding her hand, then she held on to the half-wall and 'walked' herself around.

Her favorite was when the lights when down and the disco ball came on. She let go of that half- wall and made her way to the middle of the rink. Once in the middle of the rink she kept going around in little circles (without holding on to me) and was so, so, so proud of herself. She kept saying "I did it!"

There was falling...a lot of falling. But she got back up each and every time and giggled through most of it.

There was even the limbo. She did the limbo. The first time going under the bar I held her hand and went through it with her and I knocked the bar down; so next time around I let her go by herself :) She made it through 3 rounds of limbo.

We tried the regular skates but I think they were too 'heavy' feeling on her feet and the wheels too fast for her, so back to the plastic skates.

So the verdict? She loved it! Absolutely loved it. The next morning when we were putting our shoes on to go somewhere she asked me if we were going skating again - so now I can't wait for the next flyer to come home and go do this again.

Photo and video editing at www.OneTrueMedia.com

If roller skating isn't fun therapy then I don't know what is!

Visit Maria for more Life Is Therapy posts.

Snow Fun

We're going to have a White Christmas this year! With all the snow we got on Sat it'll be hanging around for several more days!



I thought I had some helpers with the shoveling, but they didn't last too long!




Why shovel when you can go sledding instead?


Then there was a wipe out:


But all was good because they got right back on:


Someone was happy to play in the snow:


and our "Osty Noman" (as Lucas pronounces it)



I think snow fun is a great example of Life Is Therapy - in Marie's words..."learning can and does occur most effectively through everyday life experiences at home and out in the community--for children with both typical and special needs."

Playing in the snow fits that description! Tactile and sensory exposure by touch and taste, and physical therapy by shoveling, walking in it, and building snowman, occupational therapy by using those hand muscles to make snowballs!

Take It Tuesday theme of SUN and SNOW!

My First Brain Box

Marie over at All Access Pass To Jack has a series called Life Is Therapy - this product is a great example of an every day life experience that doubles as therapy; and fun therapy at that!

Last week we received My First Brain Box from Timberdoodle.

My First Brain Box is geared towards ages 3+ but Lucas was interested in the cards and would point to objects when I asked him, "where are the birds?" or answer "what is this?" questions.

I like this game for Kayla because it helps with things she's working on in speech therapy and the classroom - like improving sentence structure, using longer sentences, visual memory, and observational skills.

Included in the box are 55 picture cards with 6 questions on the back, an hour-glass sand timer, and a die.

To play the game you study a card for 10 seconds, flip it over, roll the die, and then answer the corresponding question number for your card. If you get the answer right you keep the card - the person with the most cards wins.

Right now I'm starting off holding the cards up for Kayla to look at while I'm asking her the questions like, "what animal is the giraffe looking at?" and then we'll work on the memorization and recall skills.

Besides asking the questions on the back you can also have your child look at the picture and then tell you a story about what they think is happening; great for emerging imaginations.

This is a game that both Kayla and Lucas can even play together - just by looking through the cards with each other and talking about what they see on each card. I'm even planning on grabbing a handful of cards when I know we'll be out somewhere and I need something to keep them occupied.

The cards come in a sturdy box and they'll grow with your child as their skills and age increase - as I mentioned, I can use this with Lucas now for identifying objects, colors, and counting...and then use it as the game when he gets older.

There are also other versions of the "Brain Box" - US Presidents, USA, Animals, and World.

The folks at Timberdoodle also threw a Hot Rocketz in our box. I haven't tried it out with the kids yet; I'm sure they are going to fight over it! So I'm going to order another one and give them as stocking stuffers. They are made of soft foam so they also float; I'm sure Kayla and Lucas are going to love playing with this. You can receive a free Hot Rocketz with any order by using bfreerocket at checkout; add the rocket to your order and then add the coupon code - good until Dec 21st.

I received My First Brain Box and Hot Rocketz from Timberdoodle for a review with Mama Buzz.

To Be A Kid Again

Marie at All Access Pass To Jack has a series called Life Is Therapy that I'm linking this post with. Because life is full of 'therapy' moments, when you don't even realize it. Jumping in leaves provides physical therapy, raking leaves in a pile provides occupational therapy, throwing leaves provides tactile and sensory therapy, and laughter provides 'feel-good' therapy!

I'm also linking this to Just For the Joy Of It because kids really do find such joy in the simple things - like jumping and playing in a pile of leaves!

We had nice weather on Sunday, (they didn't need hats, but they wanted to wear them). I raked up a pile of leaves and the kids just had fun jumping, throwing, and burying themselves in leaves.

Joy in the little things!