Monday, August 2, 2010

Say "Here I Am!"

I've been having a hard time writing this entry because it's really emotional. All melodrama aside, I seriously think I have a touch of Post Traumatic Stress Disorder. But this may be my most important blog written and I hope you will remember it if G-d forbid the need arises.

LM ran away last week.

The boys were watching a show on Saturday morning. DH went to get a haircut, I was doing your usual weekend house stuff. I went downstairs to get the laundry, came back up and started to fold - glanced into the den and only saw Bear. Did a double take --- called him. LM? Went into his room, into mine ... LM? LM? Nothing. And then I just got that feeling. I can't really describe it ... almost like it's too quiet or calm and I just know he's not in the house. Our back door is double locked on the top but our side door he can open. So I run out the side door into the front yard. I don't see him. LM! LM! I'm starting to panic. A million things are going through my mind, but since he's not in plain sight out front I decided to go back into the house and look again. Now Bear has picked up on my panic. I'm yelling for LM and Bear is echoing me in his little voice ... lm! lm! ... I look in every room, in closets under beds. LM's not really a "hider" - he's never ever done this before. The reality hits me. He's really not in the house.

Now I race outside .... I see my elderly neighbor across the street in his front yard. I don't know him - I've lived here 6 years and know many of my neighbors very well, but I have never actually met this man. I run across the street (only at the last second remembering that Bear is running 2 steps behind me and pause to scoop him up) ... "Have you seen my little boy?" He politely says no but goes back to his garden. I run back to my house, go to my next door neighbor's house - we are very very close with them and I know they are not home - Maybe LM went to see if they were home? But we share a front lawn - he would be in plain sight.

And then I see that their back gate is open. And they have a pool. (This is where I'm stopping again because it's too hard to relive this moment.) So in slow motion, or maybe it's in warp speed - I don't even know... I'm in their backyard screaming LM's name. There's a gate around the pool and its still locked. There's a solar cover and it looks undisturbed, but still I know I have to look. I can honestly say it was the worst most sickening moment of my life as I lifted the cover and looked for my baby at the bottom of the pool. THANK YOU LORD, LM was not there.

It's been 10 minutes ... maybe 15. The elderly neighbor had walked down the street and asked our other neighbor if she'd seen LM. This neighbor knows us well, knows LM has autism. She's running down the street toward me, her teenagers are running the other way. We're all calling LM. I can't even breathe. She says we need to check my house again. She goes inside I go in the backyard. LM! LM! She's on the phone with 911 - I need to come inside - she needs to know what he's wearing. This can't be happening.

She asks if I'm sure he's not hiding. I tell her he never has ... and then I remember what we used to do back when he had very little language. Like most children with autism, one of our first indicators was that he didn't respond to his name. We made up a little game. I would say "LM! Say Here I AM!" and wave my arms wildly; and he would answer "Here AM" (or it sounded like it) and raise his hand - and we would make a huge deal over it and give lots of positive reinforcement. And so I shout "LM! SAY HERE I AM!" I say it again.

And we hear him. From in the backyard I hear "Here I am." He was in the backyard. I had looked. We have a 6 foot gate that is latched from the inside and is heavy. Somehow he managed to open it and close it and relatch it again. He was sitting on the side of the deck and looked like he was scared that he was in trouble. And then the hysterics started. I held him and sobbed and kissed him and sobbed. Bear held us both tightly and we all cried. I managed to thank my neighbors. This was the scene that DH came home to. By the Grace of God he didn't come home to an ambulance or police car.

I learned a lot of important lessons. Here are 2 of them.

1. I'm pretty certain LM heard panic in my voice and thought it was anger. He didn't want to answer when I called because he thought I was mad. Or possibly he was distracted by something and couldn't process his name being called. We'll be practicing the "SAY HERE I AM!" game a lot more. And we'll absolutely be including it in the La La Language and Social Circle curriculum. It's too important to overlook. Many young children don't know that they should answer to their name - how would they know to say "Yes?" or "What?" Please teach them! If they wander in the store or are hiding in the house - call their name and tell them how to respond... to say "HERE I AM" It's a little game now, but might really help if you ever need it.

2. I need to know ALL of my neighbors and they need to know us. I need them all to know what it means to have Autism or Aspergers - why LM might not react like a typical almost 6 year old.

I'll end with this -- LM is high functioning. I've heard so many stories of kids on the spectrum who have wandered, some with tragic endings. I didn't think it really pertained to us. Now I know that it does. ANY child can wander, stray or hide. I'm so very blessed that this story has a happy ending.

Stay safe.


Saturday, July 31, 2010

Sensory Saturday: Sailing!

Ahoy! This week we were incredibly fortunate to set sail with The Heart of Sailing Foundation. Linda Johnson, the director for the program was one of my fellow Fortune 52 honorees. You can read her story here:

LM, Bear and I set sail on a beautiful breezy morning aboard the beautiful sailboat Tanzanite. Captain Joe and his crew were there to welcome us and give the boys a crash course in sailing. They were both little captains, taking turns wearing the captains hat and steering the giant wheel. LM was especially interested in the compass and learning how to navigate.

When it came time to hoist the sail, both boys helped pull the line (this puts the "heavy" into heavy work for sure!) -- with a look of pride they watched (and heard) the beautiful sail open and fill with air. We explored all the parts of the boat, the cool cabin, the helm and the bow. The wind was blowing, the waves were crashing ... the trip was perfect.

Towards the end of our 2 hour trip LM leaned over the side and watched the water as we sailed through. Completely relaxed, lying on his belly,the boat rocking, trailing an extended hand through the waves - this was the picture of sensory peace.

I expected to have a fun afternoon, but never thought it would be as therapeutic as it was. Linda was kind enough to send me a list of the therapeutic benefits of sailing. As you'll read - it covers ALL of the sensory bases! I can attest to each and every one. What a wonderful sensory experience this was!

Therapeutic Benefits of Sailing

reprinted from the Heart of Sailing Foundation


  • Improves balance: While adjusting to the motions of the boat, whether sitting, standing at the helm, moving around the boat, or bracing to hoist the sails

  • Improves strength: Through hoisting the sails; pulling lines to adjust sails

  • Improves fine motor skills: When learning knot tying

  • Improves eye-hand coordination


  • Provides vestibular stimulation: From the combined forward motion and rhythmic movement of the boat on the waves

  • Increases sensory awareness:

  • Auditory: Sounds of the engine as we motor out of the marina to the quiet of sailing under wind power; the soothing sounds of the waves lapping on the boat

  • Tactile: Feel of the wind; including determining wind direction with eyes closed; warmth of the sun; varying textures of the boat deck; close proximity to others in a relatively small environment

  • Visual: Focus on object on the horizon to steer the boat properly; attention to watch for hazards in the water; all the new sights of being on the water including the sun sparkling on the waves, shorebirds and fish

  • Olfactory: Well, sometimes you can smell those fish, but usually just the good old salt sea air

  • Taste: bring a snack along for this one (we did actually taste the salt water when it sprayed!)

  • Improves spatial awareness: Small environment in the cockpit requires awareness of personal space and boundaries; judging how far the sail is up when hoisting the sail; spotting objects on the horizon

  • Provides relaxation: The gentle rocking of the boat with the motion of the waves, the quiet gentle sounds of waves lapping and the warmth of the sun all stimulate the relaxation response


  • Provides social interaction

  • Provides experience with teamwork

  • Improves communication

  • Improves confidence/self esteem

  • Improves ability to transition to new experiences.environments

  • Provides atmosphere for family/group bonding


  • Improves focus and attention span

  • Provides environmental awareness

  • Provides sense of adventure, exploration and use of imagination

For more information on The Heart of Sailing Program visit:

Tuesday, July 27, 2010

School Transportation News Expo Educates Staff about SPD

Sensory Sensitivities on the School Bus

Kudos to the School Transportation News Expo for bringing in an Occupational Therapist to educate their staff about Sensory Processing Disorder and its effect on children riding the school bus. We are SO THRILLED to see awareness building!

"Sue Shutrump, an occupational therapist for the Trumbull County (Ohio)
Educational Service Center, gave attendees a better understanding of how loud
noises and the slightest touch can send some students over the edge and create a
difficult experience for themselves and their students.
By understanding how
some students might react to sudden sounds or even the slightest physical
contact, drivers can structure a bus environment that suits everyone’s needs.
But it is not always an over-response to stimuli that drivers must worry about.
Some forms of Sensory Processing Disorder, or SPD, affect children in a way that
causes them to have an almost insatiable desire for sensory stimulation. This
can cause hyperactivity, as they seek further stimulation, or even pain, as they
may be unaware of the pain as a result of SPD.
“Before they board the bus,
have them do some heavy work like chair pushes or push-ups against the wall”
said Shutrump during a workshop at the STN EXPO on July 25.
possible, Shutrump suggests making connections between successful sensory
experiences in the classroom or at home with those on the school bus. The use of
pictures to explain the rules can also help drive the point home to students.
But one of the most important tips was to make sure you never just tell a
student to “get over it.”
“With one student, we brought the safety vest into
the classroom, took photos of him wearing it, let the other students touch it
and then created a picture book explaining the procedure for him,” said
Shutrump. “Pretty soon, every student in the class wanted a ‘special vest’ too.” "

An incredible honor!

Last month I was so very honored to be chosen by Beverly Fortune of the Long Island Press as a Fortune 52 recipient. Beverly writes a weekly column highlighting women who are making a difference in their community. As you all know, Sensory Street Kids is a collaborative effort - it's our advisors, instructors, parents, supporters ... and most of all children who make this program a success, and they are the ones who truly deserve to be honored. If you missed our article, you can read it here:

Last night there was a networking event and dinner honoring the last 9 recipients. I'm very proud to be included amongst such an inspiring group of women. It was so nice to meet these ladies after reading all about their programs. I'll be sharing some of their stories with you throughout the next week. Some have wonderful resources that can be useful to our readers, and some should simply be applauded for the outstanding work they're doing.
THANK YOU Beverly for an incredible evening!

Sunday, July 25, 2010

Dr. Lucy Jane Miller discusses SPD

Hooray! More press for SPD - keeping our fingers crossed that SPD makes its way into the DSM revision as a stand alone diagnosis.

Saturday, July 24, 2010

Sensory Saturday: Rain, Rain, Go and Play!

We just got back from a week at our best friends' lake house - it was almost everything we hoped it would be ... Good Friends, Good Food, BAD Weather. Bad. Thunderstorms on the first day were actually beautiful and welcomed. There's something about sitting on the porch listening to the storm that had a calming affect on all of us. Lots of cuddling and even some hot chocolate in July. We had left realllly early so the boys were knocked out and took a heavenly nap. That was day one. By day 4 of the rain we were going a little stir crazy!
After three days of crafts, songs, movies, baking and indoor play, we were ready to kick the kiddos outside ... rain or no rain. Well, we did, and they had a blast! Here's a few of our new favorite Sensory Play ideas.

Puddle Jumping! Let a little boy outside during a rain shower and he'll find the puddles. Splashing and jumping took up the better part of an hour, but we got a little creative too. We practiced our animal walks and played "Mother May I" ... LM, take 3 giant frog jumps over these puddles. Bear, waddle like a penguin across this puddle. R, stomp like an elephant and swing your trunk through that big puddle. Who can make the biggest splash???

Mud Pies: We had all the sand toys out already, let's put them to use! We dug and squished and molded mud. Thick, squishy, messy mud. Pretty much anything we usually do with shaving cream we did with mud instead. LM wrote his name in the mud, we even "painted" the sidewalk with it. Added bonus: walking barefoot! Dig your toes in and pull them out for a satisfying "squelch" sound.

Nature Walk: While we're barefoot in the mud - let's take a barefoot walk and feel how different everything feels when it's wet. I told a modified version of "Going on a Bear Hunt" and we squished through mud, ran through the field and kicked through the puddles hunting for our bear. We also collected all sorts of little boy treasures in our pails ... leaves, worms, rocks and bugs.

Fill the Bucket: After 4 days of rain there was ALOT of water around. Garbage pails and flower pots were full. We gave each of the boys a sand pail and sent the on a mission: fill this giant garbage can to the top! They had a great time trying to carry full buckets (heavy work!) across the yard to fill the can. A little teamwork to build social skills ... LM and R carried buckets together by putting a piece of wood through the handle and getting on either side. LM ran right to the drain under the gutter and refilled his buckets rather quickly ... Bear stood still and tried to fill his pail with the drizzle that was still falling - he might still be out there ... lol.

How Wet Can You Get?: BY the end of the afternoon we had ditched the boots and raincoats and ultimately changed into bathing suits. One last mission ... get as wet as you can! "I'm getting wet under the trees!" "I'm getting wet in a puddle!" LM laid down on his back and let the rain cover him - Bear opened his mouth and tried to catch rain drops. All the boys "washed" the cars and splashed each other with sheets of water. We even pulled out the water guns.

Singing in the Rain: How many "rain songs" can you think of? We sang a lot! This was our favorite:

Bear is splashing in the water,
Bear is spalshing in the water,
Bear is splashing in the water ...
But he didn't get his bellybutton wet. Yet!
Drying Off: All good things must come to an end. Aunt Jenn was nice enough to put our towels in the dryer and they were cuddly warm when we stripped down and then wrapped up each little puddle jumper. Wrap them tight and hug them close - this was a day we won't soon forget.

Sing and Play the Sensory Way!
=D Lea

Sunday, July 18, 2010

NY Times Article on Speech Development

Excellent article I just came across, think it's important enough to pass along. When to Worry if a Child has too few words by Perri Klass, MD