LIFE IS A SPECTRUM

I've been out of touch again because we've been on Spring Break. It wasn't that we didn't have Internet access; the condo where we stayed had wireless high-speed Internet. It wasn't that I purposely took a break from electronics in an effort to reconnect on a more personal level with my family – as much as I'd like to claim that as the reason. In fact, the reason I have not been blogging is #1 on my list of “A few things Mama learned during Spring Break 2011 ...”

SB_BillySmiles_beach

1. You have to be able to hear yourself think in order to write.

Who would have thought? I had all these wild and crazy ideas about our vacation at the beach ... before we actually left. As I packed swimsuits and running shoes and sunblock, I imagined myself starting each day with a meditative walk on the beach, followed by a trip to the spa downstairs where I would work out for a full hour before hitting the sauna. In my mind's eye, I topped off this indulgence in self-care with a full body massage and pedicure. Which brings us to ...

2. After 24 hours with my kids at the beach, I want to work out like a hole in the head.

And as for the sauna: HA! I was lucky to have time for a shower. The closest I got to a pedicure was rubbing my feet on the bottom of the pool while carrying a child on my back.

But it was phenomenal week. Last year at this time, we had a “stay-cation” for Spring Break. We just didn't feel that Billy was ready for sleeping overnight in a strange place. That was a great holiday too; we just stayed in town and “played tourists” in our own city.

This year, though, we took the next step: an actual week-long vacation. Number 3 on my list is something I've stated before ...

3. A year can make a world of difference in the life of a child, any child.

Please remember that -- and help me remember it -- when we get a bit down about the current situation.

We take so many things for granted now that were practically unthinkable a year ago: eating out in (certain) restaurants without meltdown, the kids (mostly) sleeping through the night, Billy being potty-trained, Billy enjoying the company of other children. It's important to look back and realize that, even if it seems slow sometimes, progress is being made. And speaking of other kids ...

SB_BillyPrances

Beach sand = yummy tactile input :-)

4. Sometimes when we back off for a little while, nudge our little birds out of the nest, they will make breakthroughs seemingly on their own.

I sat in rapt wonder at a playground this past week as Billy played for a good half-hour with another little boy. They threw a ball back and forth, kicked it (sort of) to one another, chattered away in their own little ways, laughed and had a big sporty little boy-time. He didn't need me to provide appropriate social prompts, encourage him to take turns or guide his behavior in any way.

Of course, this wasn't actually a miracle. It just looks that way sometimes. His devoted team of speech therapists, teachers, aides, behavior therapists, occupational therapists, and family members have been working towards this goal for YEARS.

So team, take a bow -- alongside Billy. Your hard work has resulted in one happy four-year-old enjoying a great day at the playground and making a new friend.

5. Vacation is no time for flashcards.

Willow_partyoutfit

Of course, that didn't stop me from packing them. I broke out the sequencing cards one morning (3-step cards to help him learn “first, second, last” storytelling), and asked Billy about one simple picture story depicting a boy getting a book off the shelf, “Billy, what does the boy want to do next?” Instead of picking out the picture of the little boy reading, Billy replied, “Go to the beach.” And I got the message.

As a mom, I have to work on “going with the flow” a little bit. It's tough. If you read this blog regularly (and thank you, if you do!), I'm a control freak. I readily admit it. I spend so much of my time trying to be three steps ahead of every meltdown that I forget to relax and let my kids be kids sometimes. I used to have “Every moment can be a learning moment,” as my mantra, but my new mantra is, “Every moment doesn't HAVE to be a learning moment.” Chill out, mom.

6. It's Willow's vacation too.

Wait a minute, I have another kid? Sometimes, it still kinda surprises me, because so much of our planning goes into giving Billy the support he needs in any situation that I forget that Willow has "special needs" too. Even her birthday party gets planned around Billy's schedule, challenges and preferences. She's NEVER managed to blow out her own birthday candles without him getting there first.

Condo_party

Cool digs, huh? Thanks, sis!

Willow's few needs are for a moment of individual attention each day, a handful of birthday cake, and then she's good to go. The rest of the time, she's happy to make it all about her “Bee-dah” too.

7. Billy is pretty funny.

This isn't a revelation, but I was constantly reminded over the past week. One day, he was passing a stone-shaped speaker by the condo pool, he stopped pointed, and said, “I think that's ROCK music!” Then he nearly fell in the pool he was laughing so hard at his own joke. It was a pretty good joke.

8. Autism can still surprise me. And hurt. And confuse us.

pirate_sloaniebear

Are these the "captains" that have so terrified Billy? Possibly.

pirate_booboo2

Out of nowhere, Billy became incredibly fearful in the middle of our vacation. He suddenly balled up in a corner, with his fingers in his ears, screaming, “I'm so scared!” He stayed that way, off and on, for most of the next 24 hours. When we coaxed him into talking to us, the most we could get out of him was, “I'm scared of captains.” He had seen some cartoon about pirates, and we had been to a restaurant called “Peg-legged Pete's,” neither of which seemed particularly scary.

All we could figure was, like his fear of kangaroos, the fear of “captains” really means something else, some mystery made up of sensory overload, unpredictable schedule and general weariness born of several days of non-stop activity. All we can do sometimes is sit close to them, talk softly and wait it out.

Or, in Dave's case, promise Billy that if we see any captains, we'll “kick them in the peg leg and laugh.” I don't know what sort of effect this is going to have on Billy's ability to empathize with disabled mariners, but as Dave pointed out, peg legs are a bit thin on the ground these days. And it did make Billy laugh.

 

9. Sometimes autism's surprises are really good ones. For instance, even a naval air museum is fun, exciting and hilarious when viewed through Billy's eyes.

SB_Billy_Cockpit

Let's just say that on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation. The idea of spending an afternoon touring various types of aircraft is likely to send me to my bed with the vapors.

DSC_0420

Until I visited one with Billy. He went completely monkey-poop over the National Naval Aviation Museum. He danced around under the giant planes and literally trembled with excitement. He hugged the end of one plane or jet or whatever you call it and said, “I hug you! I love you, big jet!” Then he tried to insist that I close the ceiling bubbly thing over the driver's seat so that “Billy can fly. Billy can FLY!” Dear lord. I don't think so. The sight of an old bi-plane made him fall on the floor in hysterical giggles. Really?!

The museum was free and had an awesome kids play area with a kiddie aircraft carrier, complete with slides (Are there slides on an aircraft carrier? I'd like to think so.) and little helicopter that the kids could sit in. Willow quickly took command of the ship and bossed around children twice her age. I think she has a scary affinity for the military.

So it was a great Spring Break, despite the fact that I never darkened the doors of the spa or the gym and my toes still look like they've been mauled by beavers. As usual, I learned at least as much about myself and what I need to work on as what I learned about Billy. Which brings me to the end of this year's list ...

10. I should really stop making lists.

Who am I kidding? That's never gonna happen.

Reader Comments

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Welcome back to Blogland, Amanda! It sounds like you guys had a fun vacation!

"on a really really good day, when I'm in a great mood, I'm faintly ambivalent about naval aviation." Best. Line. Ever. I feel the same way! A couple of summers ago while visiting my brother, he decided it would be a good idea to tour the Diefenbunker, which was built during the Cold War to house the Canadian government if there were a nuclear attack...it is now a museum. Let's just say the kids faked interest as long as they could...

I'm a control freak too, but I almost never make lists...

Wendy

I like your lists!

Especially when they're like this! Loved this post - keep 'em coming!

So much better than our Spring break...

Sounds like a great vacation! I agree with your husband...I think peg-legged pirates should be the one prejudice that Billy is allowed. So awesome that Billy has made such great progress! That spontaneous play date is like a dream come true!

I needed to read this

#3 really hit me between the eyes. Right now I'm so wrapped up in the "what we can't do's" that I can't even fathom the future. Thanks for giving me hope!!!

Oh..and my little one has the weirdest fear of cows (cartoon and real). Makes every Ipad game with animals fun. And Chik fil A is on the banned list right now! ha! Glad we not alone in fears of things that have no rational explanation.

Sounds Like a Great Vacation!

It sounds like you had a great time! I'm so glad. Billy's progress is also fantastic!

Lists

A year can make a huge difference. Last year I couldn't stop making lists. This year - not so much.

All things considered, sounds like a great vacation was had by all.

Looks like a really great trip! Beautiful pictures. Have any tips/tricks for the car ride there and back? I think that's our big hang-up. Our kids (both of them) do not do well for after about 40 minutes. We do fine once we're there, but good grief it has to be a great place we're going to make it worth the hours in the car!

I enjoyed this post... I have a daughter who is a list maker and used to be a control freak. That has been adjusted since baby #1 came and she's the one that is due with baby #2 so her grip on control has slipped significantly. My favorite line in this is " toes still look like they've been mauled by beavers." LOL. I'm with you.

Total 9 comments

footstepsbeach

As I write this, it's the middle of the night – about 2 a.m. – and I can't sleep because my nose is stuffed up and I have this annoying scratchy cough. We've been through several restless nights now, with one child or the other unable to sleep due to this nasty cold. Now I have it.

 

I knew three nights ago that I was going to catch this thing. Willow straddled my chest at 2 a.m., nose running, unable to sleep, and after counting my eyes, ears, nose and mouth, she leaned her face very close to mine, took a deep breath ... and sneezed.

 

Ah, well. It's a mom's job to inhale the germs, gather them in our arms and walk the floor with them all night long, if necessary.

 

I wish I'd known about the headache a few nights ago. I should have given Willow Tylenol, in addition to the Vick's Vapor Rub. She couldn't tell me that her head hurt, but if my symptoms are anything to go by, she had a killer of a headache.

 

If Billy wakes up, should I give him Tylenol? I could ask him, “Does your head hurt?” But then again, I can't really rely on his answers for accuracy. Half the time, he repeats whatever words I put his mouth: "Does your head hurt?" Billy: "Head hurt."

 

If I get sick first, I have a better idea how they're feeling when it's their turn. I know what to watch for, what to medicate, how to empathize. I understand why they're cranky and sleepless and angry, because I've been there.

 

It's late at night and my mind is wandering; I'm tired and I've just taken cold medicine, and I'm wishing that autism was something I could catch for a few days. I wonder what it would be like to walk in Billy's shoes, live in his world, feel what he feels even for just a few hours.

 

Maybe if I could think with his brain for a day or two, I could learn to speak his language. And better teach him how to communicate in mine. Maybe I would understand his fear of kangaroos and feel the pain he feels at certain sounds.

 

And food: Is it the smell or sight or texture of some things that makes him physically sick? I would gladly be sick like him to feel what he feels and just be able to tell him, like I do when he has a cold, “I know. Here, this will make it better.”

 

I would love to understand his anger. He is a joyful child, and sometimes his anger surprises and confuses me. It seems to come from nowhere, but I know that's not true. Inside his mysterious and beautiful mind, there is a hidden source of his unhappiness, and I'd like to climb inside there, hunt it down, and deal with it, like I try to deal with the sadnesses and angers and unhappiness that I can see.

 

But most of all, I would like to feel his joy. When he closes his eyes, scoops sand between his fingers, lifts his hands to the sky and belly laughs as the grains filter back to the ground, I would like to inhale that happiness. I would like to dream what he dreams and catch a little bit of the giddiness that bubbles up in him so strongly that he wakes up literally in the middle of singing a song.

I can't walk in shoes. The best I can hope for is to stay close, walk alongside him, so that should he need me, all he has to do is reach out and take my hand.

Reader Comments

Sending You Hugs...

I hope you and your wee ones are feeling better soon...this piece moved me to tears, Amanda...

Wendy

The Guilt

You are so right about the guilt. I hate it. At least when we are ill first we have an idea. I hate second guessing. I am from the UK and my son Ben is 7 and a half years old and severely Autistic. He is non verbal, has challenging behaviour, is aggressive, self harmer etc etc. Over Christmas he was ill and he was really poorly for 2 weeks. I medicated him (we can only use suppositories) and I chose the middle strength. Later my Husband and Daughter were as ill and all they kept saying was how bad their heads were and there aching bodies, that they never felt as ill in their lives. They were diagnosed with flu and I hated myself. I get the same thing with new shoes. Bleeding blisters that I didn't know were happening as there was no wimpering or limping and worst of all he almost choked on Monday ....

Love this blog (I found you on Twitter) and have been reading it as have been up since 3am with Ben.

Karen xxx

So beautifully written. Very touching. I hope you feel better soon. That funk has gone around town at least 17 times already. It needs to go visit a new town. Loved the part about Willow sneezing. Caleb has learned to use his cough as a weapon of mass destruction. He actually premeditates a coughing attack aimed right at your face. It's horrible. I wonder if that's something ABA could address if we ever get our referrals out... =)

Walking with them

@Maura: You're absolutely right my friend. I have friends who have had to walk with their kids through unimaginable pain, all the while, praying that they could take it on themselves. My walk doesn't begin to compare. We all have those moments, though, like you said, when we wish we could take the walk FOR them.

@BD: As my mom says below, we're hoping that Willow has that kind of connection with Billy. She adores him so much, and as I was saying to someone recently, she's the best therapist that money can't buy. I'm waiting for her to get to the point that she can explain the kangaroo thing to me.

@Jen: I feel your pain. It would be great if we could feel theirs. It seems the least we moms of kids on the spectrum should be able to expect is a little bit of telepathy.

@Gina: Thank you for your words. That means a lot to me.

@Nan: Billy's lucky to have you. I've met so many parents of kids on the spectrum who are doing it alone, and I'm very lucky too to have a mom who has been walking with us all the way.

@Domestic Goddess: Tru dat.

@Jen: You bring up a very good point. I would hope that I would be able to relate more, but if there was nothing I could do to help, that would be a curse indeed.

I really appreciate all the support and feedback. It's been a long week ... but I know we all have those :-)

FYI, Today was the 14th day since I emailed Disney about our New Year's Eve troubles at Hollywood Studios. I received the automatic response saying that someone would contact me within 14 days, but as yet, I've heard nothing else. Watch this space ...

Guilty

I recently had a similar experience with catching a cold after the kids. It was a nasty one and I felt terrible for being so frustrated when the kids weren't sleeping! Oh well, there's always something to feel guilty about :(

To be in our kids' heads even for a day - I think it would be a blessing and a curse, especially if there still wasn't anything more we could do for them after.

I'd do anything, ANYTHING to get inside my kid's head. Just for five minutes. Just so I could understand.

FWIW

GL always denies pain. Even post-surgery, he insisted he had no pain. But when he is angry for no apparent reason, it's amazing how often Tylenol improves things. I figure when he's showing signs of distress of unknown origin, the recommended dose of Tylenol won't do any harm, and might help.

Beedah's 6th sense

I've always said that Willow will be Billy's best teacher/friend/guardian as they grow up. She adores her Beedah (brother) and makes every step with him. In time, she will be a big help to him and to you in understanding him, I'm sure. You are an outstanding mother.....and writer.

Total 12 comments

coffeemug

COFFEE!

  1. Take my son to the potty and back to bed.
  2. Repeatedly tell him that “What is the opposite of elephant?” is not a question I can answer before finally answering, “Dog,” just to get him to go to sleep.
  3. Repeatedly curse the Baby Bumblebee “Opposites” DVD.
  4. Fidget nervously in bed for so long that Dave, still sleeping, literally kicked me out of bed.
  5. Change my clothes three times. What outfit says, “Take care of my baby. I'm right across the street?” I assemble an outfit. Then change again, because I realize I look kinda like a ninja. Sundress it is.
  6. Drink a very large cup of coffee.
  7. Fueled by caffeine and nervous energy, update my Facebook status twice, tweet about the joys of coffee, and write about 40 million posts on MomsLikeMe.com (sorry, ladies). Expect to receive a couple of calls and emails later questioning my mental stability.
  8. Drink two more very large cups of coffee.
  9. 10 minutes until wake-up. I rearrange some of the living room furniture. And then put it back because I can no longer get to the bathroom.
  10. Wake Billy up for school! With the song “Good Morning To You.” His response: “Please stop singing.”

    Happy first day of school!

Reader Comments

love it

lol I love it! I look forward to our first day of school in a couple yrs!

1st Day of Pre-K

You're a great mom. Billy will be fine. Put your feet up and relax. Take a nap when Willow naps. Our boy will meet and greet you with a huge smile on his face. No doubt! But, the minute you get him home.....CALL ME!!

First day of school - thumbs up!

Thanks for all the good wishes! It turned out REALLY well ... Ms. Jade said he had a very good day, and while he was very tired by the end (he was too nervous and excited to sleep much the night before), he really participated in almost everything. He was talking about one of his friends from class last night. We're looking forward to Day #2 being even better. He slept MUCH better last night.

First Day of School

Hahahahhaha! Awesome. I'm with you on that Baby Bumblebee DVD.

So how did it go? And I'm not just asking about Billy, I'm asking you, too? How'd you do with the drop-off? :)

Hugs to all our babies. How lucky are we to have a front row seat as we watch them grow!?

FDOS

Haha... Super funny... I know that feeling-what should I wear?!?- so well. Glad Billy had a great first week!

Total 5 comments

 

This Friday, I find myself unusually broken and battered. None of these injuries is particularly bad, but I can imagine, if my body was a corpse on CSI, they would instantly recognize me as a mother of small children because of the following:

 

mama_babies_bday

They look so innocent here. They are not.

5. Two bite marks that are healing: Willow has discovered her weapon of choice.
4. Repetitive stress injury in my shoulder from pushing 75 pounds of kid around in the double stroller.
3. Lower-case-i-shaped bruise on the bottom of my foot from stepping on a #%*@! piece of the magnetic Leapfrog alphabet in the dark.
2. Twisted knee from slipping on the kitchen tile after Billy discovered the ice maker and left a puddle of melting ice in the middle of the floor.
1. Bitten tongue from being tackled unexpectedly from behind after an inexplicable scream of “Get the bumblebee!”

Reader Comments

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Total 3 comments

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