Every Word is a Pearl

Every Word is a Pearl

When you are "in the middle", every word is a pearl.

You try not to hope for too much, but you never stop hoping...

You temper your expectations, but you work so hard to bring the language.

Your favorite stories are the ones where other parents with autistic children say, "Oh, my Johnny didn't talk until he was 7, and listen to him now!!"

You look around at your fellow parents with autistic kids and envy the ones whose children are communicating and pity those with nonverbal children...

My son is using some phrases, but it's mostly words...let me tell you how they thrill!

We were riding down the road the other day, and Tommy said "Hangooger!!"
For the first time ever, he said, "Hamburger!" to indicate that's what he wanted! Excited as can be, I drove STRAIGHT to MacDonalds...always, to show him, the power of his words.

I found an amazing book of poetry recently that had the poem that we all dream about. The poet is an Atlanta native, Elizabeth Newman. I had never read poems that described my feelings and Tommy's state of being so perfectly. The poem about language coming made me cry and strengthened my state of hope and longing. Here it is:

Can This Be True? by Elizabeth Newman

Can this be true?

It is almost too much to believe,these seemingly sudden turns.

She has changed her pattern of being so unexpectedly

that I have yet to change my own habit of mind.

She speaks to us in sentences, words of pure music, sounding strong and clear

like the bugle of a rescuing cavalry liberating our giddy ears!

She's moved from repetitive nouns and verbs to prounouns! prepositions!

articles and adjectives! which pepper her melodic phrases

with a scent we inhale like air itself!

She asks for hugs and kisses and gives them often with smiles and giggles

and baby arms wrapped tightly around our overwhelmed shoulders.

She laughs uproariously when we ham it up

and finds her own antics just as entertaining!

Well past seconds, now she spends long sweet minutes, even hours

engrossed in interactive games with eager playmates

She even Imagines monsters growling, owls, calling, and toys greeting her.

Such normal, everyday stunts for any young child.

But for our child these things are MOUNTAINS of accomplishment.

They are hard-earned trophies she presses into our hands,

inflating our hopes, filling our hearts, enlarging our lives!

Can this be true?

For ours is a child who once proteced her delicate senses

by covering her ears from unknown sounds

humming to block out requests

sliding out of chairs to avoid looking at a puzzle

Walking in circles to create a meditative dance

climbing high to feel balanced and weighted

throwing, pulling, biting to fill sensory needs

and shunning interactive play

to avoid sensory overload

The SAME child now clamors for attention,

delights in the sounds and sights that surround her

mimics our words and intonations,

invites us to hold her lovingly,

to be with her in imaginative, playful ways!

The fog has lifted from her world!

Yet my head is still full of clouded memories,

silver-lined, to be sure

for she has chosen to come to us, as we chose to go to her.

And her coming, is an event of such magnitude

that I imagine I will spend years ahead

absorbing and drinking in

the fragile wonder of it all.

Thank you Elizabeth Newman, for helping me explain how every word is a pearl.

The Divorce Rate Among Parents of ASD Kids

The Stats are high...80%, 90%...as if the national divorce rate average of regular famililes isn't high enough, right? And you wonder why it gets so high with these parents of autistic kids.

Well, maybe scroll down to the blog below about behavior problems, costs, stress, etc. in our lives and you might start to understand these stats.

But honestly, to understand them, you have to BE them...which is very different.

You would have to have had the experience of watching your child develop and knowing that his development is wrong.and then having your spouse and most of your friends and family tell you you were being "neurotic"and to stop worrying. Then being basically alone in finding your child the help he needs...which more than anything, is the TIME and energy of those who love him to keep him communicating instead of spinning the wheels of little cars all by himself.(Not surpisingly,most of the stats show the spouse finding the speech therapy, OT, ABA, and Floortime, is the mom, just as the mom is the primary caretaker with typical kids)

Having to wait 8 months just to get in to see a neurodevelopmental pediatrician to have your child receive a more severe diagnosis than you expected.. and having your spouse at the MacD0nalds 20 minutes later yell at you for telling the pediatrician that there were 3 other cases in the family...you are reeling....and crying.....over this diagnosis and this spouse is ticked that his family history was discussed...ARE YOU KIDDING ME???(You had hoped friends and family were right when they told you not to worry, that you were being "neurotic" and that it was "your problem" You never hoped something so hard in your entire life)

But none of this should really be a surprise since studies show that most parents of children with autism don't recognize a problem until 2 years of age....so you spend 2 years blissfully thinking everything is fine.

Imagine, having 3 other relatives in the family..with autism...imagine screaming at your spouse after being told you were being "obsessive and neurotic" for noticing something was wrong...I remember shouting..."What is wrong with you people? Do they have to have it stamped on their foreheads, for God's Sake?" And still, he did NOT acknowledge the diagnosis or take the actual prescription seriously (25 hours a week of one-on-one communication)until a neurodevelopmental pediatrician told him to!
So until that time (September 11, 2006) I really was ON MY OWN in a way I've never known before and hope to never know again... It was the hardest time not only in my marriage, but in my whole life..very difficult, and very isolating.

Those times are past, thank God, and the people who didn't understand before, do now..and we are a happy, healthy, well-adjusted little family--we made it. Mark and I made it. And he is the most loving father. He loves Tommy completely and tenderly with amazing patience.

Autism is mysterious, hard, and unpredictable....70% of cases don't become clear until age 3...maybe that's why our hearts break so much harder at that time...after spending almost 3 years "in the clear. Hard on the parents hearts, and hard on a marriage, as the statistics so clearly show us.

However, some studies have also shown that the marriages that do survive become even stronger..that the love and care of the child, as well as their love for each, wins in the end.
And when I see my husband with my son, my heart is glad.

Count us in the 15%, please. Love really does conquer all.

A Random Act of Kindness On Easter

Tommy and I experienced a random act of kindness on Easter. It was at the famous Callenwolde Egg Hunt...a beautiful old mansion in Atlanta where hundreds of kids come to meet the Easter Bunny, have their faces painted, and of course, score massive amounts of Easter eggs. Some parents of kids with autism get so tired of the panic and anxiety that their kids display in new settings that they just give up on doing new things...it's exhausting and for some, embarrassing. But the way I see it, I'm an adventurer and somewhere in his heart, despite the anxiety and the autism, he is too! So we choose the path of desensitization and experience rather than the path of doing what's easiest for him....which is spinning stuff at home. We'd practiced enough that he knows Easter Eggs have "skittles" in them...and that Easter Egg Hunts are A GOOD THING. We parked on Virginia Avenue and walked to Callenwolde....the traffic jarred him, but he hugged me and said, "I want EGG!" We powered on. When we arrived, we had to wait in a long line to go to the bathroom. It was in a dark corner...he doesn't like buildings without windows...so he threw himself on the floor and screamed, and I waited calmly while holding him in place. In the bathroom, he threw a fit, bit his wrists and said, "Seatbelt on!" (which means-Take me to the car)....I found beautiful, empty rooms and we explored the building. We went outside to the small fountain, which he then tried to jump in and I restrained him and we quickly moved on to the "bunny room"... In the Bunny Room, there were about 10 rabbits in cages hopping around looking cheerful...Tommy did well petting one bunny, but then just needed to get out of that building. I hesitated too long and he completely freaked out, fell to the floor, and kicked a bunny cage, knocking its food and water out, and getting the attention of everyone in the Bunny Room. I quietly dragged him out, and he sifted the gravel he found outside (sifting things is the BEST!) We needed the bathroom and found, with our Irish luck, an old, antique beautiful one in the upstairs of the mansion. Miraculously, it had an amazing view of the front grounds, an aerial view of thousands of Easter Eggs and hundreds of 2-3 year-olds waiting to get them....we heard the whistle and watched the action. I saw a light-bulb go off. THIS is an Easter Egg Hunt...this aerial view of it, such a gift. We headed for the "6-year-old" area....ready, set, go!! Tommy set off and got one egg..."No parents allowed on the grounds" the speaker blared...Tommy then freaked out and threw himself down because he couldn't get the egg open...I called out, "Get more eggs, Sweetie!"...he ran to me and had me open the egg and the candy...but he didn't like the candy, threw himself down about that...I felt myself starting to decompensate a bit.."Dangit, Chill Out!" I said, to the glares of several nearby parents who no doubt thought me a hag. He went on, though, and did see what was going on around him, and was excited by it, ya know? Understanding it more. So at the end, we walked away with our one egg. He was slightly jarred from all the noise and excitement, but glad in a way. We walked toward the shade of the 7 60-year-old magnolia trees with kids climbing in the branches. And this little family saw him with his one egg...and they saw that he has some challenges that other folks don't....and without a word, they had their 2 beautiful daughters hide about 10 eggs in and around those Magnolias...and those little girls had a terrible time trying to get Tommy's attention, but THEY DID IT! And with their help, in his own time, in a different area, he found 10 more eggs. And I watched with a tear in my eye and thought.....THANK YOU ALL SO MUCH!!!! And Lord, thank you too. How wonderful, this precious, perceptive, dear little family at an Easter Egg Hunt. Tommy left his "second" egg hunt with confidence and at least a couple of pieces of candy that he actually liked. And I left the second Easter Egg Hunt thinking that no matter how crazy this world is that we live in, no matter our differences, we must still be good to each other...by practicing random acts of kindness.

Translating Autism Studies into Practical Help for Kids with Autism

We have a great link on our "Favorites" that we look at about once a month (www.autismspeaks.org/science/science_news/index.php) It highlights the most important peer-reviewed studies on autism as their results emerge. As a parent of a child with autism, I read them with the eye of a teacher with great hope. A lot of the studies hit home to me and help me understand so much of why Tommy does what he does how he does it! How can I translate it into something meaningful for him NOW?? Here are my thoughts of those studies. And as they come out, I will add them to this blog.

A July 2009 study done by John Hopkins and published in the journal Nature Neuroscience showed that children with autism rely more on proprioceptive abilities than on visual input from their environment to coordinate motor movement and learning. The study also showed that the greater the reliance on proprioception, the greater the impairment in social skills, motor skills, and imitation skills. This study suggests that the theories on brain connectivity in autistic people are accurate in their claims that the short-distance connections are stronger than the long-distance connections (since proprioceptive connections are short and visual-motor connections are long-distance connections).

Layman's Terms: Wow! This is why I can't get Tommy to look at his socks and feet as he tries to put them on. He just won't! He does it by feel. This is why I have to tell him "Use your eyes" when he's trying a new climbing wall or motor action. This is why we nearly cried when we were trying to teach Tommy to ride a bike and he just wouldn't look at the path in front of him!

Advice: activities that make the child HAVE to look such as hiking on a really bumpy trail, riding a bike on a winding trail, climbing, walking on rickety paths, and for fine motor...drawing, writing (which many have a terrible time with), using utensils...

Study of face recognition deficits in children with autism - 1999, Journal of Autism and Developmental Disorders. This study found that children with autism do not distinguish faces well. Interestingly, this deficit was not related to cognitive deficits.

Layman's terms: They don't look at faces often enough to develop strong face-recognition skills.

Advice: The best teacher of eye-contact I've seen is Vincent Carbone. He teaches kids with autism to WANT to look at faces. Another suggestion is being in your kid's face when he's tiny, getting his attention lots. And how about making sure he sees lots of pictures of family members and friends faces from an early age? Yep, get him looking!

Study of Joint Attention, Gestural Deficits, and Later Language Development in Children with Autism, Journal of Autism and Developmental Disorders, March 1990. This study compared children with autism with children with mental retardation but no autism. It showed the deficits in gestures and joint attention (looking back at you and pointing to show is an example), sharing attention with you (they prefer to be solitary in their attention). A fascinating finding in this study was that later language development was shown to be more correlated with gestural non-verbal joint attention and less correlated with the variables of IQ and initial language levels.

Layman's terms: Wow, the language deficits could be more related to this lack of desire to share experiences (share their attention with you) than with their cognitive deficits... They are wired to not really be social! This one is quite tough. And yet it's not. Relationship-based, affect-filled communication that begins with following their lead.

Advice: Do everything you can from very early ages to get them to share their attention with you and make it fun! Give them lots of praise for looking at and experiencing emotions WITH you! Have lots of fun together and comment excitedly that you are seeing these things TOGETHER. And follow his lead and his interests and comment excitedly about all the things (no matter how odd) he is doing! Get in his face, man. Share life.

Study showing that children with autism were not interested in the social aspects of animated characters whereas typical kids looked more at faces. This study (2009 NIH) showed that the children with autism were more interested in audio-visual sychronization. (sounds that were matched by motions). It might also explain why children with autism tend to look at mouths instead of the eyes of the person speaking to them.

Layman's terms: They like the sound to match the motion

Advice: music, rhythm could be used in teaching anything...what about a cartoon character whose eyes made sounds?? Or whose nose did? How to get the attention to the face?

July 2009 - Journal of Child Development. This study said that in the past decade scientists had located a group of regions in the brain that is used specifically for social cognition. These areas may be developed by age 6, but between the ages of 6 and 11, they become much more specialized. The study showed that children with autism had deficits in thinking about and understanding the emotions, thoughts, and wants of others.

Layman's terms: They are not wired to understand the emotions and wants of others.

Advice: Teach emotions, actions, wants, and hopes of others from early ages and never stop including it in your child's curriculum, especially before the age of 6. When someone is sad, point it out! Explain why! Teach your child to recognize emotions. Use real people and pictures of real people. Give your child a pet to take care of and teach your child to notice when that pet is happy, sad, hungry, thirsty...wow, so much of this research seems to warrant relationship-based approaches!

In the first truly randomized, controlled study of an early intervention for autism, the Journal of Pediatrics reported in November 2009 that indeed, it does make a huge difference, the intensive early intervention group made huge gains over the children in group situations in public placements. It is critical to point out that the intensive group received a play-based, relationship based intervention (not table drilling) and that the control group received public special education with much less one-on-one.

Advice: Get that one-on-one for at least 25 hours per week and make it fun! Get the speech, ABA, and OT you can from the schools, get extra private, and put on your mommy, daddy, aunt, and friends boots and provide the rest! Everything under age 8 that encourages communication, eye-contact, affect, and skill-building is worth its weight in gold. JUST DO IT!

A British study done at the University of Cambridge in December 2009 revealed that on top of not understanding the emotions and wants of others (which has long been known), that the autistic brain also struggled to process information "about the self". In the control groups, neuro-typical people's brains became more active in the ventro-medial pre-frontal cortex when asked about themselves than when asked about "The Queen"....the autistic subjects (no pun intended) had the same level of activity. Michael Loub, who lead the study said that this proved that people with autism are not egocentric, as once was thought. they have trouble making sense of themselves and relationships between themselves and others.

Layman's Terms: Wow! Sigh. Help!

Advice: Help them know themselves by commenting often on things and people that they like and dislike. Help them understand their relationships with others through comments and photos about friends, relatives, hobbies. Help them see the interests they may share with others. and build relationships as strong as you can. Help them have friends and spend time learning about themselves and others. Help them understand themselves while also looking outward at otheres.

According to the chief science officer of Autism Speaks, Geraldine Dawson, 22 well-designed studies between the years of 1982 and 2007 have proven the benefits of vigorous exercise in decreasing repetitive behaviors, hyperactivity, self-injurious behaviors, and aggressive behaviors in children with autism and in improving attention, general motor function, general levels of happiness & self-esteem and social outcomes. Vigorous exercise was defined as cardio-vascular exercise for a minimum of 20-minutes straight per day.

Advice: She recommended including a rigorous exercise program in the student's IEP. For parents, obviously all the fun physical activity you can get into their day, the better. And the hard part is getting school personnel to follow through, but possible peer buddies can help your child get the exercise he or needs during his school day. It is so important for ALL kids, but doubly so for ones with autism who have difficult behaviors to overcome and severe attention problems. SOS!

Roses are red, violets are blue

The perfect day is one with you.

Let's travel the land and have such fun!

I feel so lucky to be the one,

to have your company, joyous and true,

Mommy & Daddy & Maggie & You!

To My Friend Apache

Oh How I Love to be Up High

Riding you while I look at the sky.

Your motion gives me peace and joy

You know me as a little boy.

With you there is no stress or fear

You carry me with love and cheer.

You see me in a different way....

And bring such warmth to any day.

Hurray, an unconditional friend I've found!!

To ride and feed and walk around....

Love ,

Tommy

Let the record state that BAD ABA therapy for a child with autism IS WORSE than no ABA therapy.

When I tell people we're in the public school system, we sometimes get these "Looks"...like how could you choose public school for a kid with autism who needs so much?

Well, I guess it's time to share about our experience in a PRIVATE school for autism. Let's see, where do I start? Do I start with the fact that the school he entered did not even do their own evaluation of his abilities? (No ABBLS, no formal test, nothing-what arrogance!, what cheapness! What sloth!) Do I tell you that they charged $75 an hour, claiming a 1-2 adult-child ratio that never happened? Do I tell you that they used an old-fashioned style of Lovaas ABA that made my kid 1. temporarily lose his personality 2. lose the spontaneous language he had (data chart to show this, want a copy?) 3. Have severe diahrrea for 40 days out of 9 months because they told us the lunches (of the 7 kids in the class) were refrigerated daily in the morning when they were not? (Monday nurse reports at 1:00 to show you...is that enough time to catch it from a classmate?)

Or how about walking up behind a therapist who did not know you were there and who said sternly your your child 3 times "Look at me"....then you see your child whimper, and this assistant jerk looks at another therapist and says, "Well, at least I got some eye contact out of him...."

When I look at their "data sheets", I want to cry...he learned nothing....during the time he was there, he learned to answer the questions, "What is your name?" and "How old are you?"...guess who taught him these? ME, the mom! They promised they would potty-train him, and didn't even start to try. His pretend play skills basically disappeared, and he developed scab marks around his knees from biting himself to escape the TOTALLY INAPPROPRIATE GOALS OF numbers, letters, and colors that they chose for a 3 YEAR OLD. Hello, how about teaching him to WANT to communicate...oh NOW you tell me that you don't like DIR-Floortime...then why is it in your add? Wow, you don't have any kids? Hmmm, neither do any of your therapists...

The director favored certain parents...they were the ones with money...the corporate lawyers, the business owners...the rest of us, and our kids....she basically ignored. And she did not want to learn anything new like (HELLO, YOUR METHOD OF ABA SUCKS AND IS ARCHAIC, or HEY, WE DON'T THINK IT'S OK THAT YOUR THERAPISTS SLAM KIDS DOWN IN THEIR CHAIRS TO TEACH THEM TO SIT...AND YOU WONDER HOW THEY END UP UPSTAIRS IN SECLUSION?) The rest of us were left to hope we got a nice therapist, but as we all know, shit rolls downhill, so if the boss is a jerk, she will likely hire in kind, etc.

So those of you out there who think private schools for autism are a better bet for your kid, think again, do more research, find out what type of ABA they espouse, find out if they are open to DIR-Floortime, talk to the director and find out if that person is a jerk. The county schools might not quite have it together, but at least in my county, they are finding people with hearts and minds to move forward using the type of ABA that not only teaches skills, but teaches children with autism that communication is FUN....so where we live, we'll take the county over the private crap any day.

OR you might end up hooking up your pop-up camper, taking your funny, communication-challenged child into your vehicle, and doing the best thing you could possibly do for him: give him all-day communication and experiences that are not repetitive. Give him explanations for the emotions he and you are feeling...pause and wait for the eye contact that will change his life if he can make it a habit...teach him as many words as you can.

and get the heck away from the buttheads!!!!