Bedtime Stemming and Emotions

The clock flashed 1:11 am....

My ears had been listening to the non-stop vocal stemming for 4 hours now. My eyes could barely stay open. I had tried every trick I had up my sleeve; brushing, reiki, floor-time... This was just something we had to ride out.

1:24 am...

I was tired, I knew we had a busy day ahead of us; Music therapy, occupational therapy, physical therapy, and speech therapy. Mondays are our busy days... coming off of a 3 week bout of the kidney stones my mind and body was tired and weak. So tired! Patience has been drained from my essence... I snapped in a voice that must have seemed ferocious to her, "SAHARA, PLEASE GO TO SLEEP!!"

She started to cry. Not a tired cry, but a pissed off 'you hurt my feelings kind of cry!'. She was screaming on top of her lungs this dramatic forced angry cry!! Then she yelled, "I HATE YOU!" (pause) "I HATE YOU!"

I was stunned!!

I laid there in disbelief, not sure if I should cry or laugh. I rewound to the moment my older daughter, Emily, uttered those painful 3 words. I remembered the devastation in my heart and felt a twinge of motherly pain.

1:28 am...

I wasn't sure how to respond, so I laid there listening to the screams and cries of her processing the foreign emotion of being pissed off at her mother. I felt bad I raised my voice. I felt guilty knowing she couldn't control the stemming. And I felt helpless in the knowledge that if I interrupted her, she would have to start all over resulting in a long sleepless night.

1:30 am...

Part of me was quietly relieved as I reached over to rub her warm back. She uttered those hateful words! This had huge significance! It meant that she understood she was pissed off and she understood she was pissed off at me... not the stemming, not the autism, but at her mother for losing her patience. She had come out of her stemming and appropriately experienced her emotions.

1:34 am...

She rolled over into my motherly arms and rest her head upon my breast. She whimpered as she fiddled with my fingers. "Sahara, I love you," I gently whisper as I stroked her tears away. "I love you more than the infinite universe."

1:36 am...

All was quiet. I heard the rise and fall of her exhausted sleep. I brushed away my tears and sighed, "I am so sorry."

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A Year of Leap and Bounds

As the yellow school bus pulled up, I felt a surge of excitement… I couldn’t contain my childish smile!

All day I wondered if Sahara would get that it was her last day of school for summer break... Or would she wake up on Tuesday wondering why we were out of routine? As the bus neared, I could see this smiling little face peering through the bottom of the 3rd window back; a spark was in her eye and she appeared to be rambling on about something that she probably only understood.

As the bus came to a screechy stop, I swear my heart skipped a beat…. Summer was here! My girl exited the bus bare foot and ready for our summer adventures. She turned to the bus driver and aid to say, “Ba-Bye…. summer”.

YES, SHE KNEW IT!!!

We skipped across the yard to the house without any worries of the week to burden us. Once inside she dumped her red backpack and carefully went through each item; sharing memories of a year of huge milestones, growth, and companionship.

This year she was able to make her first meaningful friendships with her little classmates, Ray and Addie. They were true friends as friends should be complete with purposeful play & interaction, consoling of boo-boos, and the excitement of seeing one another tomorrow. I am so pleased that she can experience the satisfaction of having true social interactions – that alone will inspire the natural desire and shift to want more of the same.

This was a year of leap and bounds not only socially, but academically as well—She had learned to print letters and write her name; sing her ABC’s as well as other songs; match colors, shapes, and animals; follow routines, participate in circle time, art, occupational and speech therapy activities,; all of her goals on her IEP had been met or close to it! She had worked hard and we have seen the fabulous outcomes for it….

I say ‘she’ because the teachers, therapists, and I had given her the space and guidance to blossom while she did all of the work. Yes, I give kudos to myself and the staff; each of us offering our unique skills and patience… but it was Sahara who demonstrated her determination to succeed. I hope inside she recognizes that her efforts and willingness to enter our world are acknowledged and seen as astounding!

I am sure that there are children who do not have the support to come out of their perceived fog… I suppose it is easier for some parents just to turn on the TV and let their child be consumed by the electronic babysitter… Or some teachers who lose sight of the quite child playing quietly in the corner…Maybe the green therapists who just don’t have the skills yet to know what to do with the ‘child that is hard to crack’. But Sahara was (and is) fortunate, she didn’t have those obstacles at home or in this school setting.

Sahara has learned naturally how to begin to foster relationships and develop cognitively. This summer will be full of adventures and learning. Integrating what she has learned this year within her natural home setting will only foster further growth.

So, as we sat there with purple hands and bare feet, I realized that it wouldn’t be long before we were able to remove the labels that some have insistently placed upon this bright little girl. I look forward to that moment about as much (probably more) than waiting for the yellow bus to arrive bringing us summer.

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$3,000,000...A Call To Action!

I just wasn’t sure what I would write on “National Autism Awareness Day”, but just as I was in the height of getting the girls ready for school my sister called. She was watching Good Morning America; she was telling me about how it costs $3,000,000 dollars to raise a child with autism. Catching my breath from having helped Emily change 15 times for picture day, I said, “I know”.

I started to think about this $3,000,000!! I googled around to find out how much it costs to raise a typically developing child and that number was still quite high – averaging around $235,000.

Then it dawned on me, as I prepared Sahara’s breakfast of a GFCF smoothie, that her specialized diet alone was capitalizing on our single income. And what about the clothing that had to be a certain fabric because of her sensory issues; just yesterday I had to resort to turning her leggins inside-out to avoid the seam against her skin. And the kooshi balls, tampolines, the sensory box, the pecs... the list of home aids is just innumberable.

All of this and the speech and occupational therapies, food, specialists, supplements… swirled in my head. The thought of it is enough to overwhelm even The Donald. But all of these things have a place, something we learned to adapt to.

However, what I don’t grasp is the $2200 neurologist bill that arrived in our mailbox yesterday; he was only in the room 20 minutes— tops! Or… what about the autism specialist that is charging $300 an hour, excluding the lab work or treatments/supplements in which insurance won't touch, does he have a right to exploit parent’s hope - because of the almighty dollar?

Autism is a viable industry, just like cancer. I try to avoid downer feelings of capitalization taking advantage of the families and children faced with this epidemic, but sometimes it is difficult. There are so many things available for the proactive parent; but not always the means to pursue it. Certainly, $3,000,000 is not just sitting in an account waiting to be liquidated. I really feel for the children whose parents are not even aware that a GFCF diet can be helpful to some of these kids, that the county will pay for some of the therapy or that floortime, a no cost approach, can effectively be used in your own home.

I suppose that is why I started this blog, to educate all parents that there are rays of hope in their future. With the new administration more hope floats into my essence than before. I pray that they can comprehend the desperation in the 1 out 132 children’s families who are experiencing autism and faced with a $3,000,000 persoanl deficit. More so, I hope the recognize that the wisdom of the universe can help guide us to create a more prosperous life for these kids; one of hope, productivity, and meaningful relationships.

Recently, I recieved an email stating the Obama Administration did ask some of the "Evolutionary Leaders to communicate about what is transpiring on the planet, and how we can change the course of the unprecedented events that are challenging this planet. "

I think now more than every that we need to let our leaders hear our voice. Please join me, Deepak Chopra, Gregg Braden, Michael Beckwith and many, many others, in showing this administration how many people are in favor for

* Building a global community and creating a culture of peace.* Restoring ecological balance to nourish all life, and mitigate the effects of climate change.* Engaging in social and political transformation by calling for a more conscious democracy.* Promoting health and healing by acknowledging the profound mind-body-spirit connection.* Supporting research and education that optimize human capacities.* Encouraging integrity in business and conscious media.

The Evolutionary Leaders are also asking us to sign a petition to show the Administration how many people are in favor for these changes to occur. They need 100,000 signatures. The petition link and a discription of their recommendations can be found here:

http://www.thepetitionsite.com/takeaction/248704259

Please consider taking action. This stance will help our leaders see that there has to be another way to afford health and peace for all of the children of this world.

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Floortime Approach to Autism

As a parent of a child with ASD I found it frustrating to implement some of the behavioral directives in treating a young child with autism. I wanted to find a way to have meaningful interactions with her that were not conditioned. This frustration ignited me to continue researching other viable options and that is how I stumbled across Engaging Autism: Helping Children Relate, Communicate and Think with the DIR Floortime Approach. This book was written by Dr. Stanley Greenspan after successfully working with children with Autism Spectrum Disorder.

Written in manner that it can be used as a tool for parents and providers, this book offers theories behind the causation of autism and strategies to help create meaningful interactions with a child with ASD. One of the things we were able to implement immediately was a concept within the Floortime Approach that allowed us to enter our daughter’s world in order for her to begin to enter ours.

The process was quite simple: Stop, observe the child, and then think of a creative way to be present in her activity of choice. This could be as simple as observing the child rubbing a blanket corner, then you sit down quietly next to the child and begin rubbing the blanket next to the child’s fingers. Observe the child, does she acknowledge you? If yes, even if it was a slight glance, you just engaged the child! The protocol guides you to do this type of interaction numerous times a day.

I was amazed that she responded immediately. I saw my daughter fiddling with the remote control of a fire engine, so I came down onto the floor with in the space she was playing. I “walked” a 3 inch baby doll closer to the fire engine; she spontaneously picked it up and started to move the baby up and down the fire engine ladder. WOW, she rarely used imaginative play!

I sat and watched her for a few minutes then picked up a small mommy doll and had her stand at the bottom of the ladder. My daughter stopped and looked at me, then moved the baby up the ladder and yelled, “Help!” I responded, “Baby, are you okay?” To my surprise she answered me, “Yeah, I ok.” This went on for about 15 minutes. Our first interactive play ever!

I found entering her world this way to be easy. Since that day we have had many meaningful play interactions through my entering her world through her interests while following her lead. I have found this to be a great technique with my older child as well. When she is doodling or journaling, I will sit down next to her and start doodling too... before I know it we are writing notes to each other or drawing on a single piece of paper. She is more apt to open up to me and share when I use this approach.

So often I see a therapist come in with an agenda. My advice to therapists, educators and to parents, whether you are interacting with a child with ASD or a typical child, try entering their world and see how much more you can accomplish.

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