Thursday, April 26, 2007

The Signs - Part Three!


When Paige was about 3 or 4, I started having concerns about her development. At two, she had Speech Therapy every week. She was repeating sounds, and filling in the blanks on songs when we stopped…like Old MacDonald had a ….she would sign an animal and try to copy that sound.

She had words, and even though there were not many clear ones to anyone but us, they were purposeful and meaningful to her.

Today, she doesn’t even seem to connect with the idea of repeating after us for words. She still has a few words, perhaps 5 or so. But, they come and go. She will have a couple of words that stay for 2 or 3 months, and then, they are simply gone.

She also has a very “sing songy” voice – not the typical deeper voice you sometimes hear from a child with Down syndrome. Its lilty and sweet – one of my favorite things about her. And one of the things that led her doctor to diagnose autism.

She is a “singer” – she loves to hum, and play sound games, she will sing “dee-ah” or “nay-nay” or combinations of sounds as she entertains herself. These sounds she will repeat when we say them. Again, these groups of sounds change, and when she loses them, they don’t return through any prompting by us.


Paige has very scattered skills, as opposed to just being slow to acquire skills. Apparently, children with T21 will typically gain skills in relatively the same order as other children, albeit a bit slower.

When Paige was 2 or 3, you could put 10 videos on the floor; she could pick the one she wanted out, put it in the VCR (now the dvd player!), change the channel on the tv to the “video” and then push the correct buttons to start her video. She had favorites and knew how to use the fast forward or rewind button to get to the exact spot in her movie that she wanted to see.

Although she liked watching TV, she had favorites, and nothing else seemed to catch her attention. She loved “Who Wants to Be a Millionaire” and we swore that she would recognize the words on the top of the screen as we were flipping channels before the show actually came on.

She also loved watching bowling and golf on TV – go figure!!!

Since she was a tiny, tiny baby, she has never once looked at a book upsidedown. Even at 5 or 6 months, she would turn a picture book up the right way before she would look at it.

Although we don’t *think* she can read much past sight words at this point, she love, love, loves books, and will look at magazines for hours. Her favorite…a phone book or an encyclopedia.

Paige can conquer a wooden puzzle very quickly. She understands that toys need batteries replaced, and that you need batteries and a screwdriver to fix them.

She has some music toys that are her favorite that she will play over and over again – some of them have dozens of songs on them, but she knows just how many times she needs to press the button to get the song she wants to hear—and she will choose one or two favorites and listen to them over and over again.

She conquered "" very easily - she could very quickly match letters, drag them to where they belonged, etc. She is very good at the computer.

But, at 10 years old, she still is having a very difficult time identifying simple body parts, like her nose, her eyes, her mouth. No matter how many ways we try to teach that to her, she just doesn’t seem to be able to connect to that.


When Paige learned to crawl, I used to take her to a play group. The room had a vinyl floor on it, that was white with intermittent black squares. We used to laugh at how Paige would only crawl on the white squares – how the black ones would stop her dead in her tracks and she would go around them.

She does that with my tattoo too – she will touch 2 of the ladybugs, but will not, not, not touch the third one.

She had some sensory issues as a baby – she hated to have dirty hands, and the tiniest amount of food on them would mean she would not eat another bite.

She also was very temperature sensitive to food – she drank her milk warm until she was probably 5 or 6 years old.

However, she is not a picky eater now, she eats a very good variety of food.

She has a thing with lights – certain lights in our house have to be turned off – she doesn’t like them on at all.

She has always loved her hands – she will “talk” to her hands and just put them up in the air and stare at them for a very long time. We have pictures of her doing this throughout her lifetime. She loves touchy things and will take the corner of a blanket and run it up and down her arm for comfort. She will also take one of my fingers and do the same thing.

She also loves playing in the sunshine as it comes into our windows, and will position herself throughout the day in the sun rays. She loves holding her toys or hands up and making shadows. She can do this for a long time - two hours at a time sometimes.

She has favorite toys that she will be very attached to for weeks at a time. Again, when she is done with them, she is done. It always takes her a very long time to like a new toy that we introduce.

She has never spinned toys or played inappropriately with toys, but she is a spinner herself. We have timed her spinning in a circle for as long as a half hour, humming, listening to one of her music toys. When she stops she is not even remotely dizzy.

But, even with these kind of strange things, she never has really insisted upon anything…she has never thrown a temper tantrum because her routine has changed, or ever appeared to get upset because we tried to distract her from what she was doing.

In fact, it has really been just the opposite – even when she was a baby, it was hard to find incentives for her – she could be playing with her favorite toy and you could walk along, take it away from her, and she would just get another toy.

Some of the real “eye openers” for me in talking with the doctor were what he described as “indiscriminate affection” – she is affectionate and lovey, and huggy with everyone…something I thought was a SURE sign she was not autistic.

She also asked if she cried or laughed frequently for no apparent reason. Paige never cries. I cannot even remember the last time she cried. But, she does have giggle fests that sometimes last a half hour or more. And we don’t always know what triggers them.

When she was about 3, we couldn’t even turn on “Who’s Line Is it Anyway” as that show for some reason sent her off into a giggle fit that would make her have to lay down to catch her breath, and give her hiccups.

Looking back, the very strange thing is, we would have to actually skip the channel, as, like I already said, it seems as if she would recognize the show from the words at the top of the screen, before the show even appeared!

Who knew! I thought she was just a happy kid!

Another question that really threw me was the doctor asking if she came to me for comfort when she was hurt.

Honestly, I cannot remember a time that Paige has displayed pain since she had her gallbladder out at 2 or 3 years old. She has such a high threshold of pain that even when she has had surgeries, the surgeons are amazed at how little pain medication they have to give.

I was kind of stunned at that one – she has never been hurt – she has never fallen down and cried, never seemed distressed, etc. She has had ear infections so bad that her eardrums burst, and she happily played and acted normal the whole time.

Still, she was, what I thought, atypical of a child with autism…she is so easy going, so friendly, so happy all the time. She is not adventurous, or a risk taker.

She can entertain herself for hours on end. I dare say we could leave her in the living room for 4 or 5 hours and come back and find her quite happy and content, playing with her toys (not that we ever actually do that, lol!!)

I will add more things as they occur to me.

What a kid she is!! So cute, and so very loved!


mum2brady said...

Thanks for sharing your experience and advice with us Betsy. Paige is beautiful, and oh so loved, by her family and her online T21 family! I love to hear about her - and hope that someday we can all meet up :) Thanks for sharing your beautiful, wonderful, sweet, smart, fun girl with us!

Nicole said...

I have spent a lot of time reading about your girl Paige. Thank you for sharing your experiences. As I embark on a journey of caring for a little girl with DS - I am eager to learn as much as I can. Thanks again!