LIFE IS A SPECTRUM

25000pyramid

Bad hair! The Bee Gees! A calendar of 1979

... to bring you an episode of the $25,000 Pyramid. Remember that game show?

Well, apparently Willow was Dick Clark in another life, because she remembers it too. Wait, Dick Clark is still alive. How old is that man anyway? Like 150?!

But I digress ... So Willow cuddles up in bed with me for a few minutes each morning, and she tells me things. Usually, it's just words she knows. Lately, though, she's been categorizing them. She'll sit on my chest and and recite, "Pink ... bwack ...white ...yewwoh ... orange..." and then wait.

My job is to respond, "Colors!"

Then she'll do another one: "Carrots ... peas ... ice cream ..."

"Food!" I'll guess, and if I get it wrong, she keeps going:

"Fry-fries (French fries)...eat-dog (hot dog) ..."

And I've got it: "Plastic food in your toy kitchen!"

MandiBOoboo_S

Bingo. Then she starts again: "Mama ... Daddy ... Bee-dah (brother) ...Nan..." and so on.

She loves this game. I feel like that at 22 months, categorizing words like this is a sign of unadulterated genius, but since I've never seen a normally developing child acquire language, this is probably totally normal. Everything she says seems like magic to me.

But this morning she stumped me. After we went through "Animals," "Flying stuff" and "Shapes," she came out with this list:

"Five ... car...Tar-Brown (Charlie Brown) ...eight ...Corny-corn (unicorn) ... Tar-Brown..."

Any thoughts?

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Best TV Show Ever

I really appreciate all the votes in favor of Willow's genius. I've decided that her last mysterious category was her list of the elements in the best TV show ever. She has developed an affinity for Charlie Brown second only to her brother's passion for the blockhead, and her unicorn is never left out of any game. Plus, she loves counting stuff more (The Count was a good shout!) more than anything else. So a show in which two Charlie Browns and a unicorn got together to count stuff would be BEST.SHOW.EVER!

@BigDaddy: Some seriously bad things HAVE been done to that unicorn. We will say no more.

@Ashley: I know what you mean. I spent about three years in search of a "label" (Dx) for Billy, and now I find myself in a place where the only label I care about where my kids are concerned is that they're MINE :-) Love both of them and their unique brains.

@Maura: Yes, indeedy: "Yewwoh" is just about my favorite word. Also, "Wiwwoh," which both of my kids say for "Willow." I will kinda miss it when they can both say Ls properly.

@Jenny and @Kristina: I have been told by many a speech therapists that girls chatter earlier, in general, than boys. It all starts to level out in elementary school, but typically, little girls learn language faster, because our brains are wired for communication. Now Billy's has been obviously been more delayed than most, but I thought it was interesting that there is such a known difference between boys/girls.

Your daughter is a total genius! My 23-month-old started saying mama and dada at the typical age, but then stopped. Then he started just grunting and pointing. He has now progressed to incessant babbling of many different single-syllables, but mostly he'll just work on one at a time over and over, with his voice raised, lowered or enunciated at certain points for emphasis. He is supposedly a "normally developing child"...

Things that rhyme?

(and yes, I know Five Car, Charlie Brown and Unicorn don't really rhyme... But she *is* only two years old)

Yewwoh

In my book, Willow gets the "genius" vote!

How much does your heart melt every time she says "Yewwoh"? Each time Ollie says, "Mama, will you pway Wegos wif me?" I drop everything, because how could I ever say no to a sentence like that?

Henry learned how to pronounce his "L"s in September, the week he started kindergarten. Next stop: learning to pronounce "th".

Snippets 'N Stuff

Not a clue! Chances are you'll figure it out someday :) My daughter is pretty good at figuring out Cody's puzzles when I cannot. Sometimes it takes team effort! Good luck and keep enjoying her!

Maybe it's a new recipe. As I recall, the unicorn was in a stew recently. That recipe may have needed a little more roughage.

My thoughts are that I just want to squish those adorable cheeks!! She is too cute. I love that she wants to play games. I'm continually surprised by what my daughter does/says. I can't tell if it's because she's a girl, a 2nd baby, or NT, or all of the above but she keeps me on my toes!

Sounds like a genius to me!

Total 14 comments

Slow-Poke-AHontas2

Slow-Poke-A-Hontas: So named for the speed with which she moves when we are trying to get anywhere quickly.

I took a vacation today. Nowhere fancy, and the stay wasn't long, but for about two hours, I took a vacation from special needs parenting.

At first, I didn't know where I was. I mean, I realized that I was at my daughter Willow's preschool for her first-ever Halloween celebration, but I missed the sign that said, “Now entering the Normal Parenting Zone. Please stop hovering.”

School volunteering is old hat. But I'm always there as “Billy's shadow.” I'm so used to running interference, making apologies, settling Billy down, explaining why he doesn't want a candy cane or anything yellow or pudding to eat, that it truly didn't hit me until 30 minutes into Willow's party that she is FINE.

And I felt then what I'm feeling a little of now: Disloyal. The disloyalty came after the overwhelming relief but it was there, surprisingly, under the surface.

I felt like I had defected to another country. In this country, parents don't keep their hands on their children at all times. They stand back against the wall with their cameras, smile at their kids' shenanigans and occasionally glance at their watches.

There were occasional tears or tantrums, but looking into the faces of the parents consoling those children with a slight upturn at the corner of their lips, I saw no sign of the panic of the special needs parent. No, these tears were normal. These tantrums age-appropriate. No one was darting scared, paranoid glances around the room, afraid to see judgment in the eyes of other adults.

Standing there among them, taking occasional snaps of my child participating in the singing and dancing, sitting with her class, eating her snacks and fighting briefly over grapes, I allowed myself to take a few deep breaths and let my heart rate decrease.

There it was. The guilt. I felt guilty that I was enjoying this party more than I had ever enjoyed Billy's school parties. Not that I don't enjoy hanging out with my son – far from it. But school parties are rarely fun for him or us. Crowds of new people, an upset in schedule, weird food, a strange set-up to the room – it can spell disaster.

I felt guilty not just for Billy's sake, but on behalf of all my friends in the special needs parenting community who would never have this experience. I don't think for a moment that they're looking at my normally developing child longingly (particularly when I have two screamers at once). But this morning I felt like I needed to call each of them up and describe the sights and sounds of this whole new world, the way you might describe your first view of the Eiffel Tower or the first time you see a McDonald's menu written in French.

Slow-Poke-AHontas_Dance

Like it or not, I'm a special needs parent who happened to then have a normally developing daughter. Billy made me a parent. He molded my parenting style years before Willow completed our family circle. He taught me to be a better person and showed me that I'm stronger than I believed possible.

Because the demands of parenting my autistic child are so great, Willow rarely gets the undivided attention of either of her parents. She tags along to Billy's school parties, his therapy, most of his play dates, and they do Kindermusik together. And she loves it. There is nothing in the world she adores more than her big brother, her “Bee-dah.” But today, it was just the two of us, hanging out in Normal-town and site-seeing together. Because growing up with her unique brother means that she's just a stranger in this un-strange land too.

We haven't emigrated. At 2:30 this afternoon Willow and I will pick Billy and head to his group therapy. She will squeal with delight at the sight of him. And he will watch the videos from her Fall Festival party, with equal delight, over and over and over again.

For a couple of hours this Halloween, ever so briefly, I dressed up in the guise of Normal Parent. It was fun to wear a costume for a little while. But I know that it's not me.

Reader Comments

Oversharer over here too!

Wow Amanda! I love your writing style. I also love the fact that you embrace the oversharer title as I do! Hello Soul Sister!!

Congrats on a successful Halloween weekend. My heart goes out to you as a mom who shares custody with my former spouse. I am familiar with the feeling of being in one place but feeling a bit of guilt for not being in another.

Keep the stories coming!

I don't think any guilt is necessary - just enjoy the moment for what it is.
Life is filled with unique moments and special blessings - each of them different, but equally important.

this post touched me to the core. I love the way you captured the feelings of all special needs parents. No one is normal...most people's abnormalities are hidden and the Perfect Posse are just good at disguising their kinks.

Adorable! She has fantastic moves! Glad you got to have such a special day with your daughter. I'm sure you both needed it :)

How do you treat a person with a disability?

The above comment reminds me of a PSA from the '80s that said, "How do you treat a person with a disability? Like a person."

How do you treat the parent of a person with a disability? Like a parent, who's presumably doing the best he or she can. If they're obviously struggling, ask if there's some way you can assist. To those who say outsiders are not looking down on these parents, well, many aren't, but enough are to keep us on constant high alert whenever we take our children in public. If you doubt that, search "smockity frocks" AND "autism". She has since apologized, but there are millions more like her. We can never get away from them entirely. Imagine living in fear that someone would call the police and report you for child abuse every time your child ran a fever. Well, the neighbors have called the police on us because our son was having a meltdown, and meltdowns are far more common here than fevers.

How do you treat the parent of a child with a disability? Like a person.

jeanne @ inspiring ideas

What a sweet visit to "Normal Town." Although with kids, I'm not sure "normal" exists anywhere! :-)
I love the brother sister love relationship! What a lifelong bond that will be - invaluable.

This was a beautiful post. I don't have a special needs child, so this was a rare glimpse into something I know nothing about. I hope I say this right and I don't unintentionally offend anyone....

When I hear about parents with special needs children I wonder how I'm supposed to feel. Am I supposed to feel bad for the parent? For the child? Am I supposed to realize how incredibly lucky I am for having a "normal" child? If I feel lucky does that imply that a parent with special needs is not lucky?

I think this post helps clarify that "normal" is really just a relative term. And that we're all lucky, no matter what the circumstances because we have a child(ren) that we love regardless of anything.

FINALLY ...

...someone made fun of the song to which my daughter is bustin' out her Step Up 2 The Streets dance moves for. She seems oblivious to the fact that "backin' her booty up" in a song about "Jesus in the Morning, Jesus in the Noontime" is probably not appropriate. At one point, she kinda started doing karate, so I'm not sure what's going through her head.

And DJ Lance is totally awesome.

Total 21 comments

willow_armyhat

Willow re-enacting the Normandy invasion in the back yard.

While I wasn't looking, my daughter became a friggin' genius. At least, that's how it seems to me. Everything comes so easily to her: words, numbers, letters, imaginative play. I'm so used to the feeling of working so hard to help Billy accomplish those normal milestones that when Willow does something completely normal it seems like magic. Like a miracle.

She's known her alphabet for months now. You know, the little ABC song. But then about a month ago, she started to show us that she knew letters out of context as well. And she knows most of their sounds. When she's in a really good mood, she can count to sixteen (I don't know why sixteen; maybe she's already counting the years till she can drive), sing six or so songs, name every member of our family, half a dozen colors and use a few short phrases: “He sweet.” “I hold this.” “Read it.” “No more letters.” And “Wucky. It stinks.” That last one was her review of broccoli.

She even happily asks to brush her teeth with her Hello Kitty toothbrush: "Teeth! Teeth! I hold Tooth Cat." (Hello Kitty is now and forever always "Tooth Cat" in our house.)

Did I mention she's nineteen months old?!

I know I sound like I'm bragging – and I am a little – but her precociousness kind of terrifies me. It's like she has Billy's memory but without showing any of the autism traits. At least, not yet.

And I know that makes me sound crazy. But I can't help it. I scrutinize every little behavior to try and see any signs of ASD. Is she shaking her whole body in some stimming behavior? Oh wait, no, she's “wiggling” because the Little Einsteins are telling her to wiggle. Did I mention she's also really good at following directions?

Occasionally, I'll get worried that I'm not giving her enough undivided attention. Even though she's home with me during the day, I spend a great deal of that time dealing with Billy's therapy appointments, planning after-school learning projects for Billy, emailing Billy's teacher, writing about Billy ... meanwhile, she's over in the corner teaching herself French and playing some elaborate game like “United Nations Economic Summit” with her dolls and nobody's noticing.

Any day, I'm expecting her to come up to me and say, “I've finished your taxes and paid the bills. If I program some new widgets into your website will you sit down and blow me some bubbles?”

Even her birth and the months right after are a blur to me. Long after I finished off the bottle of Vicodin that came with the C-section I was walking around in a bit of a fog.

That was the same time we were getting Billy's official autism diagnosis, and though I didn't realize it at the time and though I was deliriously in love with my baby girl, I couldn't allow myself to get lost in the joy of our new little person.

The upside is that she's been there right alongside me throughout Billy's therapy, and she has definitely benefited. She sings songs from the early days of Music Therapy that she hasn't heard since before she could talk.

And I've become a better communicator because of Billy's therapy – better able to encourage communication in both my children. I wish all parents could have a good speech therapist, occupational therapist and behavior therapist on staff, because there are so many wonderful things to learn that really can make a difference in everything from talking to tantrums.

Try as I might to turn blogging into a learning activity for her, she's not buying it. And I'm starting to get more and more freelance work – the money of which we can really use – so she spends more and more time playing at my feet. In fact, the other day I found her beating my keyboard with one of her dolls and saying, “Working! Working! Working!” Either the doll was supposed to be me typing -- or Willow is starting her own blog about what an a-hole of mother she has.

All of this is the long way of getting around to a big admission: We're going to put Willow in preschool. I will miss her like air, but I know she's going to love it. She needs friends – besides this big, old one who can only blow bubbles so long before needing an oxygen mask. She needs structure. And she deserves to have a day centered around the sorts of things she enjoys: music, dance, art, and lots of learning.

She's going to a great preschool. In fact, it is such an adorable, joyful place that I always feel like I've walked into Santa's workshop when I go in there. That is, if Santa relocated to Florida (which, let's face it, he ought to do). I wish they'd let me enroll.

We haven't set Willow's official start date yet, but it's coming soon. I haven't had an empty house during the day in over four years, and the thought kind of terrifies me. Would love to hear thoughts from those of you who've pushed your last little birdie out of the nest (at least during the daytime). Did you feel guilty? How much did you worry? How did you handle it?

Meanwhile, I'm going to assuage my guilt by joining Willow, Paddington Bear and The Little Einsteins in a game of Parliamentary Procedure.

Reader Comments

“Working! Working! Working!”

Wow! A smart and beautiful girl, your Willow! I love that she calls Hello Kitty her "tooth cat." Brilliant!

My heart felt a little stab of pain for you at the “Working! Working! Working!” thing. I can really relate to that. The other day, Henry asked me why his friend Charlie is always with his mom. I said, "Charlie's mom doesn't go to the office the way I do." And Henry said, "Does that mean she loves him more than you love me?" OUCH!

Don't feel badly about sending Willow to preschool. We sent Ollie to preschool at two, and he got so much out of it! He's a very shy child, so I think the exposure to other children has helped him out a bit with that. Not to mention that he's surrounded by super cool cars and trucks and playdoh and paints, plus a spot on the storytime rug with his name on it. Willow's going to simply lap up the learning opportunities awaiting her at school. Good luck!!! :)

Hey, are you going to the Blissdom blogging conference in January?

Pre-School is Great...

Don't feel guilty, Amanda! Willow will love pre-school...she's smart, and will enjoy the stimulation that she'll get there!

I've been a working mom through all three of my daughters' lives...was able to stay home with the first two until they were eighteen months old (and then they went to private day care). For the third, I was a single mom, and was forced to go back to work when she was six months old...that was hard! I was still nursing and got up at 5 a.m. to pump...Hope is 12 now, and the most outgoing of any of the girls...

Wendy

Yes, She is Genius...

(and the sweetest cuddle-bug!), but she did not get there all by herself ;). You and Dave deserve credit for encouraging her potential, despite the neverending distractions since her birth. It will be an adjustment to send her to Good Sam, but she will be in the environment that she would have had if only she had been born before 1980 (meaning, most mothers stayed at home full-time and there was always someone around to play with or to help watch your kids). Good for you and good for her! She is so like you in that she seeks out new experiences and new company like oxygen; she has a innate joie de vivre (OMG, I am speaking French, it must be Friday!!) that lets her enjoy any environment that she is in. Not everybody is like that, but she is, and kudos to you and Dave for having the courage to let her go and have those new experiences.

You talked in your vlog post about becoming inhibited by your fears . I would argue that may be the case in some areas of your life, but your willingness to let W. go to Good Sam shows that you are NOT afraid to do what is best for your kids. Both of them!!

What a Smartie!

Wow, she really loves to learn things! My daughter was like that too (still is, actually!).

It sounds like you do have a genius on your hands!

Who the hell is Willow?

This is an outrage! You have another child?!?@?? She is soooo cute. I have friends in the same boat...with a boy on the spectrum and then a typical girl, and believe me they were all hawking over every little thing that that little girl did. On the one hand, we are all so shell-shocked about the whole autism thing and hopefully #2 won't get too screwed up over it. On the other hand, so nice for you that you get to have the typical parenting experience as well as the special.

Another Product of the Letter Factory?

Congrats to Willow! And you should brag...that's way cool! I recognized the song you were singing as one from the Leap Frog Letter Factory DVD that my kids LOVED. They learned their letters and sounds early, too, and I credit it to that DVD. Maybe they have a Leap Frog periodic table DVD? ;) Bring on the next challenge!

wow, you daughter is a genius! That's great. Found you on SITS. BTW-My nephew is autistic too. We do the autism walk ever year in hopes of finding a cure someday.

Total 7 comments

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