Light It Up Blue for the Stimming Beetles

Autism Speaks Light It Up Blue

April is Autism Awareness Month. A group called Autism Speaks initiated a campaign on World Autism Awareness Day on April 2 each year to “Light it Up Blue” (#LIUB). The idea being, “Thousands of iconic landmarks, communities, businesses and homes across the globe unite by shining bright blue lights in honor of the millions of individuals and families around the world affected by autism.” Home Depot even has a #LIUB display featuring blue bulbs with proceeds benefitting Autism Speaks.

As a proud Autism mama, I was determined to #LIUB, and dutifully set off to the Home Depot to purchase my blue bulb for our front porch. After hunting (and finally asking), I found my $2.99 25w blue bulb and checked out. The hubba hubba replaced our old bulb with very little prodding. So I was quite happy when evening arrived and I got a chance to turn it on.

And then it happened.

The hubs and I were enjoying our evening relax routine on the porch when we heard it. Buzzzzzzzz. Tink. Buzzzzzzzz. Tink. Buzzzzzzzz. Tink.

It seems the neighborhood beetles are drawn to the shining blue light. … Not unlike some our visual kiddos…

Buzzzzzzz. Tink.

Then I started thinking… what if some poor crazed person thinks the blue light is actually a police call box and comes running towards our house.

Buzzzzzzzz. Tink.

What if it’s against the law to have a blue light displayed outside your home? Any form of blue light on your car is against the law. (Says the girl who used to play with her car Fast & Furious style…)

Buzzzzzzzzz. Tink.

Does anyone even know what the hell this little 25w blue light is for?!

Buzzzzzzzzz. Tink.

In the end, the hubs and I had a wonderful laugh, and in my heart I hope just one fellow Autism family drives by, sees it, smiles and thinks, “Yay! Autism awareness! We are supported!”

Buzzzzzzzzz. Tink.

 

Wordy Wednesday : 10+ Ways to Practice Speech On the Go

10+ Ways to Practice Speech on the GoWhere do we, as caregivers, spend most of our time? My guess is one of three places: doctors/therapists office, the car (because of all those appointments), and home (because you have appointments there too!). We’ve covered some waiting room activities to help keep everyone out of trouble, so let’s zoom along to the car.

The car is a great place to practice speech. After all, your charge is strapped in and can’t run away!

1. Play “I Spy” or “I See” : Depending on their speech development you can point out different objects with “Look! I see _________!” or play a more genuine came of I Spy using descriptive words to see if they can identify what you’re looking at, “I spy with my little eye… something red. Shaped like an octagon. On a pole. Beside the road. etc.”

2. Sing : Keep the radio turned off for simple, favorite duets (The Itsy Bitsy Spider never gets old around here.) or crank up the radio and sing along at the top of your voices. Practice is practice. Use karaoke tracks for extra fun!!

3. Talk : I love me some quiet time in the car, but, again, it’s a great place to practice speech with a somewhat attentive audience with no where to go. The obvious topic is what did you do today or what are you going to do today. Action Jackson gives very vague, random answers, so I’m usually prepared with more questions such as, “What did you have for lunch?” “Who did you play with today?” “Did your class do anything special today?” Talk about where you are going, and what you are doing. Tell jokes. Catch up on favorites (colors, animals, games, etc.).

4. Tell a story : You can tell a familiar story or make one up as you go along. You can have them chime in with the next sentence or throw in a question (i.e. One day, the farmer was out walking his… Hmmm… What was he walking?).

5. Play Virtual Hide & Seek : Pick any place in your house to hide. The other person asks yes/no questions to figure out where you are.

6. Listen : Put on an audiobook so you increase word power!

7. Read : Give them a book to look at or read. They can read aloud, or, describe the what they are seeing, making up a whole new story as they go along.

8. Silly Voices : Talk only like a pirate. Maybe you’re a cat?! Make up voices for different emotions. What do colors sound like?

9. Alphabet Games : Any version of the alphabet. Sing it. Name animals/people/places/foods that correspond to the letters. Name anything that starts with the letters.

10. Practice : My least favorite of my options is to simply go over whatever targeted sound Action Jackson is working on. It seems the speech teacher at school has been working on /L/ forever and a day… lollipop, lung, lace, llama, lock… Say the word and have them say it back. Have them come up with words that start with the sound.

Taking advantage of time together in the car is such an easy way to get in that extra speech practice. It adds up, and makes a difference. Do you have any fun car games for practicing speech?

 

What Autism Looks Like

We all know the story… Random person says, “But he doesn’t look like he has autism?!” I have people tell me often, “But he’s so sweet,” “But he’s so funny,” “But he makes great eye contact.” Yes, yes, I know. They mean well. They don’t know what to say. Having children with special needs, you become painfully aware of cliches and the triteness of our society. You watch other couples have date nights and vacations. You see other children running circles around your own child’s milestones. You notice the stares. You hear the comments, the whispers. They mean well. They don’t know what to say. It repeats itself again and again. To you, on the other hand, it’s part of every moment, so woven into the fabric of your life, sometimes you don’t think about it. You’re too busy doing it. It’s part of who your child is. You ask yourself is it the diagnosis or is it just inherently part of their personality? You begin to tell yourself the things “they” say — he’s so sweet, so funny, and there’s that dang eye contact. There is a line, there is no line. Wait. I’m tired. What were we talking about?

Dr. Seuss Read Across America Day was last week. I had planned to go to Action Jackson’s school to read to the kids (Green Eggs and Ham in case you were wondering), but still had a horrible cough from being sick so stayed home to keep my cooties to myself. The teacher sent an email with pictures from the morning. I always search for Action Jackson’s big bright smile peeking out from behind a classmate. I combed through each picture looking for his red-striped shirt, and was beginning to think he wasn’t in any of the pictures. Suddenly there he was. My sweet, sweet boy so serious with his big, bright yellow ear muffs clamped down tight over his ears. And suddenly, there it was. The Autism screaming through the din of noisy children. I felt the tears start to roll as I sat in front of my computer.

What Autism Looks Like

I often take pictures when the A rears its ugly head. I document. For myself. For the doctors, especially the ones who don’t believe me. For beauty. Because it is beautiful in its design. Such a different way of looking at and experiencing the world. And no matter how much you try to reason that every person is different you know in your heart this is really different. I long to understand, to be let in, to see the world the way he does. I want to help. I want to make it easier someway… any way. My photos are a deliberate attempt to capture it, to examine it, to understand it. The tears came out of sadness, but also out of joy… perhaps someone else sees what I see.

I’ve only “accidentally” captured the big A one other time. It was at his best friend’s birthday party. A bubble machine and music were turned on, and the children began to dance and play amid the bubbles. Jackson tried to join the group, and I was busy snapping pictures. Later, when we got home, I saw this one, and my heart broke. Amid all those happy, celebrating children there was my Jackson, looking as though he were reaching out for help. I didn’t see it at the time, but it was plain as day and all of those other beautiful cliches. Sometimes it’s all just too much; other times I don’t give it a second thought.

What Autism Looks Like

So what does our everyday Autism look like? It looks a lot like this…

what autism  looks like
The summer the band-aid obsession reached new heights.
what autism looks like
Meltdowns used to be a very common occurrence, complete with head banging.
what autism looks like
He’s in his own world when this look in on his face.
what autism looks like
Drawing the trucks and tractors he’s so fixated on with his pal Bunny close at hand.
what autism looks like
He enjoys lining things up, especially things he likes.

what autism looks like

what autism looks like

But it also looks a lot like this…

what autism looks like
Taking care of his chickens.
what-autism-looks-like
With his brother Dyl Pickle who happens to have Down syndrome.

What does Autism look like? Autism looks as different as the people who have it. It’s day, it’s night. It’s happy, it’s sad. It’s yin, it’s yang. It is a whole new kind of love, patience and being. It looks like everyday.

Friday Freebie : FREE Music CD for Special Needs

Free Music CD for Special Needs EducationI’d ask the question, “Who doesn’t love music?” But can answer my own question. Action Jackson. From early on, he’s always been very sensitive to sound and noise. On the other hand, Dyl Pickle rocks it like nobody’s business, loving everything from swing to country. Music is fantastic for special needs kiddos, turning on all kinds of synapses and other important brainy things I’m not even going to get into.

I recently found Tuned in to Learning: Music for Special Education, and they have some great FREE resources on their Web site, including activities, printables and a free nine-song CD you can order here. I look forward to giving it a listen.

Quick Tip : A Squeeze Pouch Helps the Medicine Go Down

Use a squeeze pouch for easy medicine deliveryWe all have tricks we’ve figured out to help our hooligans take their daily doses of medicines and supplements. A nurse once told me a puff of air in the baby’s face will make them swallow. That works sometimes for me. A friend adds Hershey’s chocolate syrup to her kiddo’s meds insisting it completely masks the taste, and, you know, who doesn’t like chocolate. Bottles and cups are an obvious one. But I recently discovered another quick, easy way to get the medicine to go down… a syringe and a squeeze pouch.

Dyl Pickle takes his daily dose of anti-reflux med with no issue despite the overtly pepperminty flavor. He’ll even huff and puff for his inhaler without issue. But give that child an antibiotic?! Heaven help you.

Bump the squeeze pouch on the counter a few times to settle it the bottom. Blow a quick puff of air in it to “pouf” it out. (Yes, I said pouf.) Take your syringe of medicine and shoot it slowly into the pouch. You can put the top back on and mix it in, or, I just give it to him like that. I love the face he makes knowing something is amiss, but not quite sure what. In a moment he’s on to his food, and life is good.

Smart mommies win.

So what tricks do you use to get your hooligans to take their medicine? A spoonful of sugar?

Add It To Your Arsenal : Yak Saks

Yep. I’m telling you about vomit bags. When Action Jackson was younger, he often gagged and often vomited on food, during meltdowns, and sometimes just because the sky was blue. I’ve seriously cleaned up more vomit in six years than anyone should have to. My life changed a couple of years ago when a nice nurse handed me a stack to take home after surgery. I started keeping them everywhere… in the car, in the diaper bag, tucked next to his bed… and they saved the day more times than I care to count. Vomit bags. Get you some.

I’m Baaaaaack

BackInTheSpecialSpotSaddleAgainDidn’t really mean to disappear on you, but ended up taking an extended hiatus for various personal reasons including but not limited to learning Dyl Pickle (my two year old who has Down syndrome) can’t really see and can’t really hear, fighting with Medicaid to get his glasses and hearing aids, wrangling Action Jackson (my five year old who has Autism) through the first half of the school year in a TYPICAL (Woot!) five-year-old kindergarten class, helping my hubba hubba get his own business up and running (The Family Handy Man if you’re local!), and dealing with some of my own health issues including postpartum depression. In case you didn’t notice, we really know how to party at my house.

That being said, there have been a lot of awesome positive things happening too. Dyl Pickle is WALKING and is now finally using a sippy cup. Action Jackson is getting lots and lots of smiles on his behavior reports. The hubs business is growing. And I’m finally getting the help (and meds) I need.

There are lots and lots of great things coming to Special Spot. We’ll soon be moving to our official domain and WordPress blog. There are going to be some fun giveaways. I have lots of great businesses and organizations to tell you about that will help. We’re going to be scheduling some fun meet ups. I’ve been learning so much, and can’t wait to share it all with you.

Saddle up and come along for the ride!

Motor Monday : 15+ Indoor Gross Motor Activities for Yucky Days

15+ Indoor Activities for Gross MotorI’ll take a rainy day anytime. We go OUTSIDE. We stomp in the puddles, make mud pies, catch raindrops on our tongue. Outside is a goldmine for a sensory kid, especially on a rainy day. But what do you do when it’s 100+ degrees outside and the mosquitoes are swarming like locusts?

I keep my boys moving any way possible, and have invested in some indoor equipment to help such as a trampoline, wiggle seat, balance board andexercise ball. My youngest son has an assortment of ride ons, push and pull toys, and even a set of borrowed parallel bars. (In case you’re wondering, yes, my house is a cross between a gym, playroom and classroom.)

But what if you don’t have that stuff or don’t want that stuff (as I feel many days)? What are your options to get them moving?

  1. Simon Says
  2. Charades
  3. Dance
  4. Move like animals (Use a book about animals to get you going.)
  5. Lay sheets of construction paper around the house like a maze. Use die from a board game to move. The pieces? Your body! Write silly movements on various pages. Have a prize at the end for the winner!
  6. Go bowling with plastic bottles and a soft ball.
  7. Play “basketball” with a laundry hamper and balls of socks.
  8. Use a sanded 2×4 or other similar piece of wood as a balance beam.
  9. Host a indoor safari. Hide stuffed animals around the house. Make a list using words or pictures of the animals that need to be found.
  10. A rousing game of the-floor-is-the-ocean-and-there-are-sharks often does the trick as we hop from pillow to cushion to chair.
  11. Push a ball back and forth on the floor. (Beach balls are great for indoor play!)
  12. Play balloon ball either with just a balloon or get really fancy-schmancy and make paddles with a paper plate and a popsicle stick.
  13. Kitchen hopscotch with painter’s tape and a bean bag.
  14. I’m a big fan of housework as gross motor activity, too. (Win, win. Hello.) Even littles can empty the dryer or drag a basket. Cleaning the shower, scrubbing windows, mopping, vacuuming… all “heavy work,” and all good gross motor movement.
  15. Try ice skating — socks for hardwoods or tile and plastic bags taped over socks for carpet.
  16. And, finally, because I think this just rocks… here’s an incredible FREE printable list of gross motor activities from 3Dinosaurs.com.

How do you keep ‘em moving?

Random Thoughts from the Front

I keep disappearing, realizing summer was not the time to launch a blog. Action Jackson pulls me one way, Dyl Pickle another … and so on … and there’s so little of me left to go around. I am NOT giving up on my dream! Way too many signs from the universe, way too much love and way too much to share to walk away now.

Summer has been rough for Jackson. He thrives on the very established routine of the school day, and seems to sink when that very established routine disappears. “Well, then, keep it up,” the uninitiated might say, but for those of us living with Autism we know it’s not that simple. Turning your life into one big very established routine is my personal idea of hell. As it stands there’s far more rut to my life than I’d like because that’s what it feels like to ME. To Jackson, those routines and patterns make life make sense; they are the thread holding it all together for him. Of course, we try to stick to routines as much as we can because, truly, it helps keep the peace, but I can’t help but wonder if this morning’s change of schedule was the catalyst for meltdown after meltdown today.

The change stands to benefit Dylan and I after school begins — shifting therapy appointments to the early morning time slots to free up our days for more fun (and blogging!) while Jackson is in school. “How mean!” No, how practical. Dylan can have his therapies without constant interruption, and can relish in the activities he enjoys such as music and books (activities his older brother can often live without). Because, yes, two kiddos with special needs takes some juggling. Hell, having one takes juggling; having two takes SKILL. I don’t even know about three. Wizardry? Witchcraft?

It’s not the kids though sucking it out of you. At first, maybe you think it will be. Surely having a child with a disability will just be nothing but work. But caring for your child isn’t really work after all; it’s called parenting. Although breaks are appreciated! But the paperwork, the barrage of doctors’ appointments, the revolving door that replaces your front door, the waiting, the rearranging, the not knowing… those are the bits chipping away at you — or who you used to be — every day.

I feel like I woke up one morning in someone else’s life — someone else’s skin. Who’s this ragged woman with dark circles, baggy clothes and missing teeth (that’s another story)? Why does she do the same thing over and over each day? Why is she always at the flipping doctor’s office? Then it hit me in one of those shining slap-yourself-on-the-head moments.

SHE IS ME.

I am her. We are the Walrus. Having children with special needs isn’t a death sentence, and neither is the life that goes with it. I’m tired of the negativity! I want to celebrate and be happy and love every minute round this rock. And, with that, I’ve been slowly waking up. Realizing I don’t have to sacrifice everything I once loved (writing, art, puppetry, etc.). It simply looks different now like that woman in the mirror.

I’ve always stood by the statement that I simply cannot relate to parents who say they grieve a child they lost when they have an awesome kiddo right in front of them. I’m NOT invalidating parents who feel that way. I never felt that way away my children, but WOW have I felt that way about myself. Amazing things happen when you give yourself permission to change the rules. No, I’m not the mom I thought I was going to be. Turns out maybe soccer isn’t our thing, but we can rock a trampoline like nobody’s business. Perhaps I’m not the calmest mom I could always be, but my kiddos now enjoy a very large vocabulary. Yes, we often eat breakfast, lunch and dinner coated in chocolate, but it’s organic and fair trade.

At the end of the day what matters most is that you and your child are present. The devil is in the details. And so tonight I celebrate by going to my first ever Mom’s Night Out. Thankfully, they’re moms of children with special needs, too, so no one will even look at me funny when I start snoring.

What’s for Dinner? Chicken and Cabbage Asian Salad

Some Every night you just need a quick, easy healthy meal everyone can agree on. This one even got a nod of approval from Mister-Don’t-Let-The-Three-Things-I-Eat-Touch-Each-Other.

dinner chicken cabbage asian saladCHICKEN AND CABBAGE ASIAN SALAD

Get a ridiculously large bowl and make your dressing first by whisking together:

⅓ cup soy sauce (I use gluten-free Tamari)
3 tablespoons sesame oil
2 tablespoons rice vinegar (I’ve also used umeboshi vinegar)
1 teaspoon lime juice
pinch fish sauce (If you have it or if not just skip it)
1″ piece ginger root, peeled and grated (You can use 1 teaspoon ground, but the taste isn’t the same)
½ teaspoon kosher salt

Add to the dressing:

Shredded green cabbage (Use 1 medium-large head or buy preshredded — you’ll need two bags — like for slaw to save time)
1 cup shredded carrots (You can buy preshredded to save time or buy the preshredded slaw that includes shredded carrots!)
2 to 3 large scallions white and green parts, thinly sliced
⅓ cup finely chopped cilantro
10 to 12 large basil leaves, chiffonade cut
2 cups cooked, chopped or shredded chicken (You can use rotissere, but I prefer to cook up about four chicken thighs — fat and skin and bone and all for flavor — and chop it up myself.)
⅓ cup roasted cashews, crushed or chopped (SKIP if you have a nut allergy.)

Stir it all up good and serve cold (better if you let it “marinate” a bit). And this is also tasty heated the next day for a few minutes in the microwave and thrown over some rice.

ALLERGY GUIDE: This dish is dairy free, egg free and gluten free. It can be made nut free by skipping the cashews and vegetarian and vegan by skipping the fish sauce and substituting tofu or similar for the chicken.