Hello my friends, wishing you a very happy autumn weekend! So I haven’t shared much about Hudson here for a while now and I’ve got a few things on my mind. (Hudson’s our little boy. He’s 6, cute as a button, mostly non-verbal and has Down syndrome.)

Our littlest soccer fan Hud – 2014  (Photo creds Designs by Linda Nee)

(If you’re new here I post recipes during the week and muse on the weekends.)

As you may know we have four boys and so you might think there’d be a lot of similarities among them. But the truth is, each one is different and unique with a personality all his own. The one family member who draws all our family together is Hudson. While he has very few words, he manages to get his point across quite nicely in a number of ways – pointing, gesturing, laughing or crying. He’s also very needy. And it’s that needy-ness that draws our family together as we pitch in to love and care for him.

One of the most frustrating things about caring for Hudson is his inability to communicate with words. It’s something we’ve all struggled with because he’s made so little progress in this area. While he understands many words, there are just a few that he can articulate clearly. One of them is ‘help’. He uses this word mostly when we’ve started a DVD for him and it’s gone through the previews but pauses because the movie play button needs to be pressed. He also says ‘ilk’ for milk.

And he’s been doing/saying this with me for years now:

‘I’ (we point to eyes) ‘ove’ (we cross our chest) ‘Oo’ (we point to each other.) I love you.

Some good news is he had a third consult last week re:a portable communications device. Finally. The tech felt he was a good candidate for a particular kind that is similar to the size of an I-pad. I won’t pretend I know exactly how it works, but it has words and symbols and he presses a symbol on a touch screen and it says the word out loud for him. He’ll have to learn what each symbol means one by one to communicate with it. He’ll have a thirty day trial first to see how it goes. Meanwhile we’ll attend a training session to learn how to use it best and add symbols and words so he can master new ones. All the paperwork is turned in and now we wait. (What’s new?)

One of the sweetest words I’ve ever heard from my children’s lips is the word ‘mom’. But Hudson hasn’t said that word yet. And that’s hard. I don’t know if the ‘m’ is a particularly hard consonant for him or what. He calls Charlie ‘Lee’ and his daddy – ‘Dee’. (Do you see a pattern here?) And Jacob has been ‘Ub’ for some time now.

#13 Ub, airborne. (Photo creds – thanks Shelby Purtell)

Last weekend Jacob (16) and his teammates were playing a soccer game. The teams were pretty evenly matched and it was a hard, physical game that they ended up losing 3-2. After each game, the team runs in a parallel line across the field as a unit towards the fans so they can cheer. Then the team runs back parallel to meet with their coaches on the opposite side of the field. This is always Hudson’s favorite part of the game.

Well as Jacob’s dejected team comes running across the field last Saturday I hear two little hands next to me clapping fiercely. Hear a husky little voice yelling ‘Yay Ub, yay Ub.’ I look down to see a very excited little figure cheering on his big brother.

It’s hard to articulate my full heart on hearing those words. This precious little person, overjoyed to see Jacob, stringing his first two words together all by himself for maybe the first time ever.

Hudson was desperate to follow the team back across the field when they turned back. He wanted to get to his Ub in the worst way. Finally he broke free, and you know what? We just let him go.

And every ten feet or so, he stopped and looked back. Waiting to see if we were coming after him. And just this once, we didn’t. He made it all the way across that enormous soccer field all by himself, stopping and starting every little bit. Until he finally found his Ub in the team huddle and crawled up into his lap. He was a welcome visitor for sure.

The future is bright for our little Hudson, and I look forward to many more sweet words to come. Even sentences.

But the word I look forward to hearing most?  ‘Mom.’

You may also like: Saturday Morning Snugglebug Alarm Clock

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Jump In With Both Feet: Hudson Taylor is an endearing little person. It’s not that I’m biased or anything. (I’m just his mother.)

I love writing about the tiny details of Hudson’s quiet, unassuming life. His little triumphs and challenges.

Maybe I love writing about him so much because he has precious few words of his own. And when I write his story, he gets a voice too. Maybe.

Speaking of voice, some of you have asked whether Hudson has gotten his communication device yet. And the answer is no, he has not. Bleh. More testing is scheduled and there are many choices, so the techs want to be sure we choose the right one. So hurry up and wait. (Story of my life.)

I’ve told you before how much Hudson fears water. And how just a few weeks ago in July he was so brave when he shocked us all and climbed into a kayak with his daddy at my aunt and uncle’s house at the Cape. And no tears.

Children are intuitive, and I think children with siblings who have special needs are even more so. You may not know that my oldest sister Elisabeth has Down syndrome too. There seems to be a protective gene that God gives the family members of special needs children.

We haven’t spent much time at the water over the past few summers because of Hudson’s water fears. It’s too bad, because I love the water. And when it’s hot, there’s no place I’d rather be.

But you can imagine it’s no fun sitting on the sidelines in the sweltering heat with a whimpering child time after time while every one else cools off in the wet. No fun for him either.

So here’s the intuitive part. After we got back from the Cape a few weeks ago in August, Charlie (10) suggests we go to the nearby pool. It’s a super hot day and we haven’t gone in some time. I really just want to stay home in the AC because I know I won’t get anywhere near the water with Hudson.

But Charlie is absolutely convinced Hudson is hot too and will really want to go in the water today. He says he just knows. Well I have my doubts, but it’s sweltering and Charlie desperately wants to go.

The funny thing about Hudson is he has routine. And he doesn’t break it. Sometimes for years. For instance, the only fruit he’ll eat is a banana. And all I can say is – thank God for bananas. Because if it weren’t for bananas, Hudson wouldn’t eat any fruit at all.

So I’m incredibly grateful for bananas. This has gone on for years and years. (Believe me, we’ve tried other fruits – many many times.)

So one day this summer we had a fresh berry salad with dinner. As usual, I put a spoonful on Hudson’s plate even though I know he won’t touch it. (Or if he does, it’s only to pitch it, I’m sorry to report.) And halfway through dinner, I see Hudson in my peripheral vision reach out and pick up a blueberry.

He doesn’t chuck it, he tentatively puts it in his mouth and slowly chews it. And then he reaches for another and another. And by this time the rest of us are in major shock around the table. (Hudson’s eating blueberries, pass it on!)

When Hudson does something new and fabulous like eating a fresh blueberry, we pretend not to notice. Ignore it. Play it cool and suave. I see nothing, I hear nothing. That kind of thing. I know, the psychology sounds odd. But if he gets sudden attention, Hudson immediately stops whatever he’s doing and hides behind his hands. And then that’s the end of that. So by now, we all know not to stop a good thing in progress. (Though he hasn’t eaten a blueberry since.)

So back to that hot afternoon and the pool. We arrive, and in time Charlie coaxes Hudson to the pool’s edge which is a miracle in itself. And then something really crazy happens. Hudson holds both Charlie’s hands and jumps in the water. He doesn’t even dabble a toe. He just JUMPS IN.

It’s amazing and I’m in shock. And of course Charlie isn’t surprised at all because he knew Hudson was ready. (!) And suddenly, it’s a wonderful, wonderful hot August afternoon. Hudson keeps jumping in. Charlie’s thrilled. I’m thrilled. Hudson’s thrilled. I text pictures to his daddy and older brothers and they’re all amazed and thrilled too. It’s life changing for all of us.

And we visited the pool nearly every day after that until it closed for the season.

Hudson Taylor is an endearing little person. It’s not that I’m biased or anything. (I’m just his mother.) 

He’s full of surprises, and I wonder what trick he’s got up his sleeve next.

I believe that people with special needs are far more like the rest of us than they are different. I came across this short video clip by BBC entitled “Things People with Down Syndrome Are Tired of Hearing” a few weeks ago. It made me smile and laugh out loud. (The girl with the red hair totally cracks me up, she’s awesome.)

Have a fabulous weekend my friends!

You may also like: Are You My Mother?

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If you’re new around here, you might not know that our littlest boy Hudson was born with a surprise diagnosis of Down syndrome in 2010. (Catch up on his birth story here: Can’t Buy This)

We were told a lot of information, machine-gun-style in the hospital following Hudson’s birth: mostly what he couldn’t or wouldn’t be able to do.

Here’s what They Didn’t Know about Hudson:

• That he’d light up a room just walking through the door
• That he’d say “wow” with genuine excitement each time a light flicks on

2013

• That he’d make us proud learning the alphabet at three
• That he’d demand “ick” (music) every time he got in the car. (And cry if it didn’t happen fast enough.)
• That he’d love to play with balls

2011

• That he’d wake up each morning with infectious joy
• That he’d adore music, singing and dancing

Nellie and Hudson, good friends 2013

• That he’d love life
• That he’d love listening to stories, looking at books

Happy 2nd Birthday dear Hudson! April 2012

• That he’d foster love, kindness and compassion in others
• That he’d make friends everywhere he goes

2011

• That he’d so beautifully complete our family
• That he’d love his little classmates and going to school
• That he’d sign “I love you”
• That his bear hugs would melt our hearts

Freeze!

• That his unique little personality would be funny, mischievous (and stubborn)
• That he’d crawl in our bed each morning, looking for snuggles

2012

• That he’d be a little love bug, steal his mama’s heart
• That he’d have a million dollar smile

They Didn’t Know that Hudson would be mesmerized by his own reflection. That his best baby friend would be that other little boy he sees in the mirror. That he’d catch glimpses of himself in the kitchen appliances, have daily animated conversations with these little friends too….. Stove Baby, Dishwasher Baby and Stainless Steel Trash Can Baby.

Hudson, having the time of his life  

Summer 2013

You can see why this visit to the Children’s Museum was one of the best days of Hudson’s life!

(Tears and tantrums when it was time to wave goodbye to all his little friends.)

Related post: Glimpse of Sunshine

The post They Didn’t Know appeared first on Through Her Looking Glass.

Hi friends and a very happy weekend to you! Just last Monday our family returned to the scene of the crime in Stalker: the lovely New Castle Beach in New Castle, NH. The following post recounts my little Hudson’s beach adventure last summer. (Hudson’s six now, has Down syndrome, the youngest of four boys.)

We had such a gorgeous Sunday afternoon a few weeks ago and headed for the mountains beach. Sure do love a late afternoon beachscape.

Not too hot. Not too cold. Juuuuuuust right. (Goldilocks approved.)

So we’re walking onto the beach to set up our stuff, pass an abandoned beach blanket, chairs, etc.  Also a plastic bag of picnic trash, all tied up, sitting in the middle of the blanket.

Oh, and a very clever, greedy Mr. Seagull burrowing through the plastic, enjoying a late afternoon snack of Doritos and whatever other remnants he can scavenge.

So suddenly my boys want to offer him snippets of our picnic lunch. Whaaaattt??? The chicken salad sandwiches I slaved over, not to mention homemade cookies and Avocado Lime Black Bean Dip? Crazy kids.

Sure, and while you’re at it – send an open invite to all the seagulls in NH. Your mother’s not so generous as that, kids.

“Nada nada,” said I.

Gets his wet chewy tube (therapy tool he hopefully chews on instead of his thumb) in the sand, then returns it to his mouth. Gets sand on his hands, puts them in his mouth and eyes.

Doesn’t know how to spit yet, so you get the picture. Think sand. Choking. Stress. Yeah. And let me add that he drinks from a sippy cup with a straw, then with utter abandon cheerfully hucks it into a sand pile.

Now here’s the heaven part. Hudson’s a Stalker. Yup, heaven. (!) I never knew when I dreamed of having all my sweet little babies that I’d bring a Stalker into this world.

Hudson, my little seagull Stalker. And seriously, it’s the funniest thing you ever saw. He gets real quiet and stealthy, sneaks up on ’em.

Of course they’re hoping for food, so they don’t move a muscle as he approaches. Give him that creepy gull off-in-the-distance stare…

Hudson’s often bored at home, asks for a “show”, looks for attention throwing things, even refuses to play with toys often. Yup, our sweet little Hudson does those things. But take him to the beach, and he forgets about the shows and throwing stuff (well, not the sand) and busily occupies himself stalking gulls.

And just when he gets close enough, and it up and flys away, the stalking begins again in earnest with another bird. The only problem is if someone (or something) is in his way. Like a sunbather. (Oops.) Or an occupied chair or beach blanket.

Yeah, that’s a real problem. Because Hudson’s focused, sees nothing but the gull, eyes glued to that elusive dirty grey bird. (Sorry birdie.)

Hudson’s determined to get that bird.

Makes me think perhaps a bird might be a good pet for Hudson. Come to think of it, a parrot. Yes a parrot could be perfect, a little extra speech therapy on the side. (And let’s hope it’s a nice parrot?)

Wish I had a video of Hudson gull stalking for you. Because you’d really get a kick out of it. Mama’s Little Stalker. He never tires of it.

So here’s a funny twist. The stalked becomes the Stalker. You gotta watch this short funny clip. A shoplifting Dorito stalking seagull. You gotta see it to believe it! Too funny.

Wishing you a beautiful summer weekend, friends!

You may also enjoy: Just Like Billy

The post Stalker appeared first on Through Her Looking Glass.

Something sweet happened today. Very sweet. I know I told you I pressed the pause button on my weekend musings this summer, but I’ll just tell you. Real quick.

So today (Thursday) is my Hudson’s last day of school. (Hudson is six years old, youngest of four boys, has Down syndrome.) The truth is, I didn’t even know it was his last day of school. I thought tomorrow (Friday) was. But this morning, Hudson’s morning bus driver kindly tells me to have a great summer. And it sounds so final.

Confused, I say “You too, will I see you in the morning?” And sadly, that’s how I learn it’s the last day. Ouch.

(Yeah, so I won’t get Mother of the Year award.)

That afternoon, the Little Yellow School Bus for special needs children arrives to drop off Hudson. And as the double doors swing open wide, the afternoon driver, she smiles. But she’s different today. Her eyes, they’re red and wet. And as Hudson slowly makes his way to the front, I see the big hot tears roll down.

“Are you ok?” I ask. Because she worries me.

“Don’t mind me,” she mumbles. “I’ve been like this all day.” Pause. “I’m really going to miss these kids.”

Now I’m the teary one. Speechless. Me. Well, almost. And husky-voiced, I whisper, “Thank you. God bless you for loving our children.”

Read on to learn more about Hudson, his beloved Little Yellow School Bus and a few of the very wonderful people that spin his world.

Dear friends, I know many of you like to stay updated on our little Hudson. I haven’t filled you in since the cardiology Heart Hudson post nearly a month ago. Last spring I’d hoped to write about Hudson and the Little Yellow School Bus but it didn’t happen. He just started back to school again. A big boy, in kindergarten this year.

So last fall Hudson started pre-school. The pre-school’s only ten minutes away, but with the school bus traffic and car line, etc. it morphed into a forty-five minute drive there and back. So driving it twice for drop-off and pick-up, I was driving an hour and a half for him to be at preschool for two and a half.

Come January, I started thinking perhaps I should consider letting Hudson ride on the special needs bus to pre-school. It’s a Little Yellow School Bus operated by Easter Seals of NH with a chaperone on board for the children. My concern about him riding the bus is that he’s mostly non-verbal.

Not only can’t he tell me how his day went at school, he can’t fill me in on the bus ride either. As my chauffeuring continued through the fall, I thought more and more about what a few extra minutes in my schedule might mean. (Guaranteed shower? Flossing my teeth twice a day?? Ha.) Swallowing my fears, I finally signed him up to ride the bus one way to school.

The big day finally arrived after Christmas break, Hudson’s first time riding the bus. If you don’t know Hudson, anything new is a significant challenge. Food, sippy cups, car seats, videos, people, music, books, places.

You name it, any change is tough for Hudson and he cries often. So I was apprehensive about how he would do getting on the bus the first time.

Unfortunately it was a frigid day. (And what January day isn’t around here?) The snow piled three feet high on either side of the driveway, as tall as Hudson. Just a narrow single file passage to squeeze by the suburban.

The bus was supposed to arrive at 12:15, but at 12:00 I heard a honk outside. Oh no, the bus. Early. They told me they’d honk and wait up to 3 minutes, then drive on.

Well first of all, Hudson does NOT like putting a coat on. Period. Doesn’t like to be hurried either. They say every person has a correlating animal.

Hudson’s is a cat.

Rush him, and he plants himself, plugs his mouth with a thumb. Ignore him, and he’ll be your best friend. (Incidentally, he also loves unwinding yarn balls…)

Back to the bus and the honk. So I rush around grabbing Hudson’s hat, coat, mittens, boots etc. His backpack. The elusive mittens are nowhere to be found.

By now, Hudson, sensing the hurry, has firmly planted himself on the kitchen floor. Refuses to budge or be rushed. Throws off the ski hat not once or twice, but three times. Tick tick tick….how many minutes have gone by?

Finally I give up on the mittens, pull his long coat sleeves down, tuck his little hands up inside, pull on his hood. Hoist my little eskimo and walk through the mudroom, out the door, and down the steps.

Setting him down outside, thankfully he decides he’ll walk. But in retrospect, I really wish I’d just slowed down.

Because the world would’ve kept turning had we missed the bus that day.

As we squeeze between the suburban and the snow bank, Hudson slightly behind me but hand in hand, he trips. Falls directly into that mile high snow bank. Snowy bare hands, snowy overalls. Tears. (Hudson, not me.) Poor little guy. (And of course I feel like the worst mom ever.)

I hurriedly brush him off and we keep walking down the driveway. The bus assistant, a cheerful older man, is waiting at the end:

“Heya Hudson! How ya doin’ there buddy? Do you like the yellow school bus?” he bellows.

At that moment, Hudson’s not doing so well. Pink nosed, teary eyed and sniffling. Not to mention a suspicious look for the bus assistant.

And my thoughts : “Oh. No. This man’s too loud. Too scary. This will never work long-term for Hudson.”

Well somehow, Hudson climbs the stairs of the bus with Charlie that day. He looks unsure, nervous. But he goes. And he’s not crying. And that, to me, is nothing short of a miracle.

Over the next few months, Hudson came to look forward to the school bus arriving. It didn’t happen overnight, it took weeks. But I think it was mostly that he loved seeing that gregarious Charlie.

And every time we’d come out the door to get on the Little Yellow School Bus, Charlie would shout up a noisy greeting. Patiently wait as we carefully navigated the door and stairs. Meet us halfway, carry Hudson’s booster seat and backpack.

And Hudson would beam. Absolutely BEAM!!!! He loved that man. Despite my fears, Charlie turned out to be a beautiful gift.

Over the summer Hudson attended a morning pre-school during the month of July. Charlie golfed every chance he could summers, so he didn’t help on the bus route anymore.

Seems there were always different drivers and helpers. And while Hudson got on the bus without tears, there wasn’t anyone quite like Charlie. We’d come out of the house, and I could tell by Hudson’s expectant face, that he was looking for Charlie. He truly loved Charlie.

So last week it was time to get back on the school bus again. This year Hudson’s a bigger boy, riding both ways. And it’s a brand new Little Yellow School Bus with tinted windows. The drivers and helpers have been so kind. The first morning we go out to the bus, and a lovely older lady introduces herself as Gigi.

Well that works perfectly, because Hudson’s grandmother is Gigi. He climbed the stairs happily, and I wave goodbye.

Several days later, the bus comes to drop him off after school. I wait and wait at the bus door for Hudson to get off. The sweet bus assistant, a different lady from the morning route brings him up.

“He gets so excited to see you through the window. Smiles and waves. It’s hard to get him out of his seat because he’s so focused watching you through the window. He’s absolutely adorable.”

I just can’t see all the joy because of those tinted windows…

Hudson has a little ritual he began over the summer. He stands in the driveway, watches as the bus drives away. Waves and waves ’til it rounds the bend and he can’t see it anymore. Then clearly says two words:

“Bye bus.”

(That counts as a sentence, don’t you think?) And then he’s happy to go inside.

This past Tuesday morning Hudson is all dressed to beat the band, ready for school. There’s still fifteen minutes before the bus arrives. All on his own, without prompting or mention of the bus, he races to the door, yells, “Bus, bus!”

I’m telling you, he loves that Little Yellow School Bus. I click on Curious George to pass the time. Fifteen minutes comes and goes and still the bus doesn’t show. Finally I call Easter Seals to see what’s up, if they’re coming.

“No school in Manchester today,” she says. “It’s voting day for the local primaries.”

Right. I knew about the primary, but somehow missed the no school memo. Then Hudson comes back in the kitchen, looks for the bus again. And I have to tell him no bus today. He plants himself on the kitchen floor. Tears and thumb.

Know what? Those tears make this mama very happy. Because they tell a story my little boy cannot: that he’s happy, loved and well-taken care of on that Little Yellow School Bus.

Tears of joy. (Me.)

You may also enjoy: Glimpse of Sunshine

The post Hudson & the Little Yellow School Bus appeared first on Through Her Looking Glass.

In the distance, footsteps. Faint, intentional tiny footfalls on stair treads.

By the stairs, the hallway door creaks slowly open. I don’t see, only hear.

More faltering little steps, coming down the hallway now, making their way towards me.

A little someone fumbles clumsily with the knob, the knob to my bedroom door.

With great difficulty, the door cracks open. Slowly my eyes open, adjust to the low light.

Expectant, a tiny face peeks through the crack. A little someone peers around, looks for me.

And then a delighted chortle. Success.

The door swings open wide. A short, barefooted and pajamed little figure slips through, purposefully turns to shut the door.

Pushes hard. No click.

And again. No click. He waits a moment, musters all his might, shoves his whole little person up against it hard.

And the door, it clicks tight. Finally.

Slowly he turns, a grin splashes. Success.

Got his mama all to himself. Doesn’t happen often.

On cat’s feet he approaches, tries hoisting up. No success. Again.

A thin, unhappy wail. Pouty face.

Untangling from bed sheets, my hands help drag him up, over the edge.

And now, pure ecstasy on that little countenance.

Burrowing under the covers, he crawls in close, face down on the pillow beside me.

I pull the covers tight around him, snuggle in close.

Little kicking legs, like treading water. He turns my way.

His face closes in on mine. Closer, inches away now.

He hones in closer still, eyes locked. Lash to lash, he stares me down with twinkling eyes.

Thumb sucking, flutter kicking, snuggling little Snugglebug.

My arms close tight, bear hug this little person, this precious little gift.

This little Snugglebug alarm clock who hunts me down each Saturday morning.

Dearest little Snugglebug Hudson:

Six years ago you arrived on April 19th. Your extra chromosome surprised us all, but mostly me. Not only an extra chromosome, but you came with extra love too. Tentatively we welcomed you. We didn’t (how could we?) know then what we know now:

That love doesn’t count chromosomes.

Such a precious gift you are. Each day we realize a little more. We sure are lucky God chose us to be your family.

Remember all those special things you want to tell us. Because someday you’ll have words, and we can’t wait to hear all about it.

Keep smiling. Keep shining. Keep spreading sunshine wherever you go.

And don’t forget to come snuggle with mama on Saturday mornings.

You may also like: Can’t Buy This

The post Saturday Morning Snugglebug Alarm Clock appeared first on Through Her Looking Glass.

Today I want to tell you about a crazy new game Hudson devised: Off Beat Musical Chairs. But first, it’s been a little bit of a crazy time at our house recently with all the busyness of Thanksgiving and Christmas. Then one of the kids ordered basketball shoes on the web. The highly anticipated shoes finally arrived: one a size 9, the other a 12. And two left feet. No joke. (Hopefully not an omen of the coming b-ball season.) Later in the week I poured toilet bowl cleaner down the shower drain thinking it was Drano. Yep. Distracted. I did that. (And I haven’t exactly mentioned it to Jon just yet. I did, however, run lots of water.)

People ask me why I write about life and family here on weekends. Thought about it, and there are a few reasons:

• #1- I have a brain like a sieve. I want to remember the little things (usually the most important) that happen. I want to remember them for longer than five minutes. Savor them. And knowing I’m going to write about the little things helps me pay closer attention, live in the moment.
• #2-  Brings me great joy to write about life and family.
• #3 – Uses up some of my 10K daily words writing here, gives my Jon a break. (You’re welcome honey.)
• And finally, if you haven’t noticed…. I particularly enjoy writing about my little Hudson.

Photo courtesy of Designs by Linda Nee

Why? As many of you know, Hudson’s five now, has Down syndrome. Life with a child with physical and emotional disabilities can be joyful. Also a strain, and difficult on the family. Simultaneously. Writing about Hudson helps me focus on the positive things that happen. The tiny milestones and progress. Also the average person has no idea the challenges of living with a special needs person. It’s a mystery. And the unknown can sometimes seem weird, strange. I find myself in a very unique position to write about mothering a little boy with Down syndrome.

Because not only does my little Hudson have Downs, but my oldest sister does as well, putting me in a rare category. Think about it: I’ve never known a day without an immediate family member with Down syndrome.

But being the sister and mother of a disabled person are two very different things.

The difference can be summed up in a word: responsibility.

Being mom to this very special little boy has had its highs and lows, joys and disappointments along the way. We deeply love and accept Hudson with our whole hearts, and yet his diagnosis changed our family and our family’s future. Forever. There have been countless physical, medical and communication challenges on the journey. Not to mention many precious and poignant lessons we could’ve would’ve never learned without Hudson joining our family.

On this blog I attempt to peel back the curtain just a tad on one little family that deals with disability daily. Mine. So you can see it’s not scary. Or weird. (And if it seems weird, don’t blame Hudson. Blame me.) Our family isn’t superhuman. We’re living life much like everyone else, just a few extra challenges thrown in on a daily basis.

I’m hoping to be one more positive voice towards loving acceptance of people with disabilities. Realizing these special people are far more like the rest of us than they are different. Dreaming of a kinder, gentler more accepting world longterm for our Hudson and many others. Striving to help humanize mental disability through writing about our typical everydays.

Jon and I were told numerous times after Hudson’s birth we were the perfect family for him. Really? I couldn’t see it at the time. I know they meant well. My thought in retrospect?

I think Hudson was the perfect child for our family.

Make sense? There’s a subtle difference there. Children with disabilities are needy and need to be served. That’s the honor, privilege and weighty responsibility our family is entrusted with: to care for Hudson and his many needs. For always. And Hudson in turn has been the catalyst for much of our family’s growth, stretching us, teaching us the meaning of true service. With a lot of joy thrown in along the way.

I shouldn’t write posts when I’m sick. (I’m sick.) Because I write (more) emotionally with a fever. But the reality is I wouldn’t get much writing done if I didn’t, because I’m sick a lot. It’s not that my immune system is weak or anything. It’s that Hudson’s is. He catches anything and everything. Also a master at spreading the wealth. See, he’s got no inhibitions about sneezing or even throwing up. On me. Or his dad or brothers. Doesn’t cough neatly in his elbow. Nope. Hudson has little awareness of needing to blow his nose or wash his hands. Might even stick those hands in his diaper. Yup. He does that occasionally. Hudson’s nearly six and still in diapers. And no sign that’s gonna change anytime soon either. These are just a few of the realities that many families with special needs children face daily.

So I told you I’d tell you about Hudson’s new game, Off Beat Musical Chairs. He came up with it all on his own, loves to play. There are two players. Hudson. And me.

He first showed me Off Beat Musical Chairs last week when he was home sick from school. Started on Monday and continued all week long ’til he went back to school on Friday. Now he comes home and plays it in the afternoons after school.

It goes something like this. But first, many of you know Hudson’s a thrower. Meaning he enjoys throwing objects like a tiny toddler would. His cup. Food. A lamp. My computer. CD’s. Yeah, you get the idea. We’ve worked and worked and worked on this bad habit to no avail. So in time, almost unconsciously, we’ve all become masters of placing valuables/breakables just out of Hudson’s reach. That worked for about four years, as long as we remembered to put things up high.

So last Monday, Hudson had a big breakthrough. He finally realized that if he got a chair, he could climb up onto that chair and it would elevate him enough to reach all those tempting things. CD’s, DVD’s, books, electronics, vases. You name it. Quickly realizing his new game, I told him to get down of course. With a little coaxing he did. This went on for several hours. Over and over and over. Hudson getting a chair, climbing up, being asked to get down. Finally I corralled all the stray movable chairs throughout the house in the dining room. All eight of them.

And just as soon as I get the last chair secured in the dining room, Hudson comes around the corner through the other doorway, retrieves it. Resolutely pushes it back around the circle into the living room again. Firmly sets his jaw, climbs that chair, reaches for the forbidden. And the whole game starts all over again. Now press replay about a hundred times. Stubborn he is. But so am I.

Last week when he was home sick, unless he was watching a DVD, he played this new game Off Beat Musical Chairs for hours. Many children with special needs do things like this almost compulsively. Over and over and over. Some open and close doors. Or make unusual noises. Or spin things. Or stick out their tongue. Or do other compulsive things. Like push chairs around the house and climb them for hours at a time. Giggle.

I’m grateful to report that Hudson was well enough to return to school again this week. So his hours to play Off Beat Musical Chairs were significantly reduced. Meaning I might keep my sanity.

The silver lining? Hudson’s learning to problem solve. And that, is progress worth celebration in the midst of the daily musical chairs insanity.

Dear Santa:

Hudson’s been a good boy this year. But no matter how much he begs or pleads, DO NOT bring him a step ladder. And if you and Mrs. Claus need a few extra chairs at the North Pole, we’ll leave some (8) by the chimney. One each for Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner and Blitzen.

Merry Christmas,

Hudson’s mother

P.S. We’re putting up our Christmas tree tonight and it just occurred to me that Hudson might want the angel topper. Could be a really long game-filled December. (If you know what I mean.)

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(Hudson’s my youngest, 5 years old now. Hudson has Down syndrome.)

Hudson’s adored music ever since he was a baby. I didn’t catch it at first. He was maybe 8 months old and we’d get in the car. I nearly always play music in the car. But every once in a while for one reason or other I’d forget to turn it on. And we’d drive for a minute or two, and Hudson would cry. I soon figured out that when I turned on the music, he’d be happy happy again. Worked like a charm.

When Hudson was just a little little baby, I’d sing Twinkle Twinkle Little Star to him. Often. We spent seemingly days rocking together. First in the NICU, then afterward in his nursery rocking chair. From the very beginning, when all else failed, Twinkle Twinkle could solve anything. It even worked in the grocery store aisle when, as a toddler, he lion roared at every Tom, Dick and Harry we passed. (Read here: Shut Up and Listen) Hudson’s five now, and we’re still singing Twinkle Twinkle. He never tires of it, always delighted anew to hear his favorite song.

Hudson’s attended music therapy since he was eighteen months old locally at the Manchester Community Music School. He’s  even famous (ha!), featured in their on-line digital view book. (You can see more of the view book here.) He gets really excited about going to music therapy each week. Learns all kinds of educational things set to music. Colors, rhythm, tone, speech, etc. And he also gets to see his beloved music therapist Christina.

It just so happens that Twinkle Twinkle and the Alphabet song are both the same tune. Did you know that? (Sure you did.) I’m embarrassed to say, and especially as a former early childhood Kindermusik educator, how late in life I realized that. But I think my singing Twinkle Twinkle so often somehow unwittingly set Hudson up for early success with his ABC’s. Because by the time Hudson turned three, he knew all his letters and sounds. He still can’t articulate many words, but he’s an ace with letters. Hudson loves the alphabet. And Hudson loves Twinkle Twinkle.

They say music is the universal language. And maybe Hudson’s love of music stems from being the youngest in a musical family. But it seems that children with special needs in particular, have an even deeper connection to the expressive. Music, art, dance. It seems to be a vital part of their communication, a deep connection to a world they can’t always communicate in conventionally.

A friend was telling me about taking her little granddaughter to a dance recital last weekend. Her granddaughter is five years old, also has Down syndrome. This little girl was riveted, “danced” in her chair the entire recital, nearly an hour and a half long. Towards the end, she got out in the aisle, danced along for the last ten minutes or so. Can’t imagine too many people watched the recital on stage with such an expressive solo recital in the aisle. Neither she nor Hudson have many words, but music and dance are beautiful ways they express themselves.

So last week it was Charlie’s piano recital at the music school. It started in the evening right at Hudson’s bedtime. Sadly Hudson’s been sick for weeks now…heavy congestion that just won’t quit. (We’re working with an ENT for answers, but none yet.) Jon and I were debating whether both of us should go to the recital. Usually one of us misses for this very reason. Hudson doesn’t do well sick and up past his bedtime. But we took a gamble, decided to take him. Had plan B, an extra car, in case it didn’t go well. Hoped for the best. Especially for the performers!

Charlie’s up first, plays The Flight by Faber. All goes well. (With Charlie and Hudson.) The next few pieces go ok for Hudson, but he gets a little antsy. Squirms, needs a nose wipe, makes occasional Hudson noises, etc.

Then comes “the” moment of the evening.

A tiny little girl by the name of Edythe marches to the grand piano. No sheet music, she climbs up on the piano stool and boldy plinks out her piece. Loud, authoritative.

Twinkle Twinkle.

In my peripheral vision I see Hudson straighten up, pay attention. His face lights up like the new dawn. This is it. Grinning from ear to ear, Hudson is in his element. He knows this piece, every note, backwards and forwards. The final note echoes, then that brief milli-second of silence before the bow and applause. Eyes sparkling, Hudson peeks at me, then Jon. Arms stretched wide, poised, ready to clap, cheer. So excited. He claps longer, louder, more enthusiastically than anyone in that recital hall. He’s her biggest little fan. Hudson lasts just one more number that night and then Jon takes him home. But it’s a magical night all the same.

As I write now, Hudson sits on the sofa, listens to his favorite Kindermusik Fiddle Dee Dee CD.

“Ick, ick.” That’s how he asks for music.

The song playing is the operatic Meow by Rossini. Hudson’s laughing hysterically, giggling, hee heeing. The funniest thing he’s ever heard. (Tickles my funny bone too.) Hudson loves this song too, loves music.

Keep shining, keep twinkling my littlest star.

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I got the biggest charge the other day, went to download pictures from my phone for the site, got quite a surprise. Oh yeah, Hudson was involved. Let me back up.

You remember Bil Keane’s Family Circus comic strip, right? I sure do. Sunday mornings were always exciting when I was little. Why? I’d like to say it was because of church and all, but truthfully it was because the Sunday paper arrived. And tucked inside, with all the advertisements, coupons and Parade magazine, were the comics. Yes, the comics. Exciting to that little person. (Me.)

Just Like Billy by allie taylor

My favorite comic strip was Blondie, featuring that work-avoiding, sandwich-munching, nap-snatching, good for nothing Dagwood, along with Mr. Dithers and crew. I also loved Beetle Bailey. And the Family Circus. Little did I know how true to life the scenes in the Family Circus would prove to be one day. Ha. Lots of confusion, busyness, little boys and love featured in that Family Circus family.

My favorite scenes were the ones where Bil Keane tracked little Billy on his myriad adventures, like the mail box adventure above. The dotted lines revealed the rapidly firing synapses in that curious, busy little Billy mind. I remember sitting on the blue family room sofa on Sunday mornings, the one with the picture windows facing out back towards the plum tree and bird feeders. My feet not quite touching the floor, I’d carefully trace those tiny black broken lines with my pointer finger. Genuinely entertained by each little stop on Billy’s journey, what he was up to this time. Which was usually avoiding a task or job he’d been assigned. It wasn’t that he was necessarily naughty, he was just easily distracted from the task at hand. (Hmmm….nothing like that ever happens in our house. Sigh.)

So last week Hudson and I are home alone for a few hours and I have to go out later, so I’ve got to sneak in a quick shower. I put Curious George on for Hudson, leave the bathroom door cracked in case there’s an emergency. (Let me just say for starters that Curious George is probably not the best cartoon choice for Hudson. He doesn’t exactly need any ideas or encouragement.) No sooner is the shower going and I’m in, than I hear the bathroom door creak open. Oh great. I sneak peek through the tiny crack between the wall and curtain. Hudson hasn’t figured out yet that when the water’s running, there’s someone behind the shower curtain. He picks up a magazine, and that’s good too, because I don’t hear a bang or crash. (Hudson has history: Hudson’s Guardian Angel .) And I hope for the best. A few moments later I hear the door creak again and he’s toddled out.

So I get out fast, discover my phone’s missing. Aha. That’s what Hudson was up to, swiping my phone. I ask him where it is. He stares at me blankly for a second, ignores me, continues watching Curious George. If you don’t know, Hudson has Down syndrome. He just turned five, doesn’t verbalize much, though he gets his point across and understands a whole lot more than he can say. We do a lot of guessing around here.

I troll around the living room looking at Hudson’s eye level, try to imagine what I’d do with a pink iPhone-4 if I were him…and in short order I find it stashed under a living room chair, screen still intact. This time. (Wish I could say the same for my iPad.) Phew.

Fast forward to a few days ago. I go to download pictures from my phone. This is what I find.

I think his hand is over the lense.

Now it’s moving off the lense.

I know, would somebody please wipe this kid’s nose???

So apparently Hudson has discovered the art of the selfie. In all, he took 21 pictures, so I spared you the full photo gallery. (Your welcome.) These pictures are those little dotted lines revealing those firing synapses in that curious, busy little Hudson mind. Just like Billy.

Hudson makes me laugh.

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I witnessed something so incredibly sweet from my breakfast seat at the kitchen counter early this morning. So moving I knew I’d write about it someday. Well, someone beat me to punch line. Stole my thunder. Yeah, someone. My better half. Ha. He was also there in the kitchen this morning. Didn’t just witness it, he experienced it, picked up his pen and wrote about it. (Good for him.) So please welcome today’s post by Jon, in honor of our sweet little boy Hudson. (Hudson has Down syndrome.)

Two Words by Jon Taylor

This past Sunday we celebrated Hudson’s 5th birthday. People are often drawn in by his personality and comment, “He must be so much fun!” And I smile and say, “Yes, we have a lot of fun with Hudson.” And we do.

Hudson is also exhausting. He clings tenaciously to a routine, yet he can change it at any time. I put him in bed the other night and did the same things I always do: brush teeth, get pjs on, read a story, pray, turn on his music, tuck him in and say goodnight. In that order. He goes to sleep like clockwork. But that night I had left my wallet on his bedside table, and went in to get it after I left. That was all he needed. It threw off his routine, and Hudson got out of his room at least six times and has been doing that for four nights in a row now. He’s also been waking up 90 minutes early.

On Sunday while we were talking in the living room, he quietly went to the kitchen and polished off the leftover chocolate cake from church, spreading it all over the kitchen floor and himself in the process. These kinds of things happen almost daily.
 I tell you that to help you appreciate what happened this morning.

Hudson expresses his speech generally in a 5 second delay. So when you say something he responds 5 seconds after it would be expected. But this morning I was getting my jacket on, grabbing keys and getting ready to race out the door with the boys for school. Hudson watched me like a hawk and, when I turned to go, stood there and said, “Bye!” 
No delay. In fact, he initiated, said it first.

I swallowed him up in a big hug and stood up to go when he said, “Hug.”

How can you resist? 
It’s hard to imagine a human being wrapping my heart more tightly around his little finger than he did in that moment.

I can’t help but think that the apostle Paul knew someone like Hudson when he wrote, “But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God.”(1 Cor. 1:27-29)

Hudson preaches an amazing sermon in two words.

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