Sahara's Voice

Dear Friends,

My daughter, Sahara, is a pre-verbal six year old kindergartener… she has delays across the board developmentally and academically. Our family is still recovering from a 7 month unemployment situation caused by an agency wide down-sizing last year. As a result we, like many autism families, are unable to afford an iPad for Sahara. I am writing you to let you know how disheartened I am to learn that not all professionals see the obvious benefits of an iPad for autistic kids and what I want to do about it.

Let me start by telling you our story: I contacted our insurance company in early December to see if they would fund this much needed tool for her. I was pleasantly surprised to learn that all we needed to do was present documentation from her doctor and speech therapist stating that she would benefit from this assistive devise. If we could provide this, then they would put it before a panel that would make the ultimate decision… not a definite yes, but a better answer than I expected.

I inquired to our speech therapist about writing a letter on Sahara’s behalf. She was pleasant about it and said she would do so over the holidays. Well, the holidays came and went and no letter arrived. Finally, 7 weeks later I called to ask where the letter was. I was stunned to get the response that, “I can’t … it is unethical.” She continued to tell me that there was no research or proof that an autistic child would benefit from such a devise. (I am pretty sure she is living in the Stone Age!)

I am even more certain this response is political and follows a money trail. She was initially more than happy to comply during our first conversation and now was saying it would be unethical to recommend an iPad for an autistic child with gross language , communication , social and academic delays? To further illustrate my political theory, let me share that she also refused to work with another piece of equipment we have immediate access to. I informed her that I have a friend willing to GIVE me a Tech-Speak and she refused to work with Sahara with this equipment too… well, that is unless we completed an assistive technology evaluation through her agency. She then proceeded to tell me that this is a “very expensive” evaluation which “most likely will not be covered by insurance.”

Now, I understand that this $2000 Tech-Speak will not have all of the apps the iPad offers. In fact, I am pretty sure its capabilities are inferior by far. From what I understand the iPad does have a multitude of applications that can help aid in language & communication, academics, social stories, scheduling and so much more. I know from watching Sahara on the computer, that she is technology savy… must take after her father!! In fact, she can navigate through files on the computer almost better than I.

So, what do I do?

To make a long story short, I have decided to hold a fund-raiser to raise funds for the iPad. I hope that I can raise enough money to not only fund the iPad and applications for Sahara, but for other autism families with economic hardships. I am wondering, does any know if Apple ever offer discounts in such situations? So many families are struggling like ours… 1 in 91 kids today have autism… how can we get this equipment into the hands of those of us who do not have access to extra funds for this essential technology?

If you would like to donate to this fundraiser, you can do so HERE or you can send a secure “gift payment” directly to us through paypal via ladysusan@sbcglobal.net.

If you would like to apply to win a iPad through this this fundraiser… we are creating an application for you to do so. Once we raise enough money, we will post how many we have available and how you can apply.

We are raising funds until April 15^th… in hopes that we can have the iPads by May 1st.

Thank you,

Susan, Jim, Emily and Sahara

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Dr. Temple Grandin: Animal Behavior, The Autistic Brain and Inspiration!

Many people get excited about meeting their favorite rock star or movie star… not me, I wanted to meet a livestock behavior expert!!

You may ask, ‘Why on earth would Alterna-Mom, a mid-west special needs mom, be interested in livestock behavior?’. Well, I am not. And yet, ironically I completely am. See, Dr. Temple Grandin isn’t just the world’s most famous animal expert and livestock rights advocate, Dr. Grandin has also won the hearts of the global autism community through her self-advocacy and insights on how the autistic brain works. … yes, that is right a DOCTOR of animal science who has autism!! She unknowingly paved the way for many of us to see that our children and loved ones are exceptional beyond labels and can achieve anything they desire.

BUSTING MYTHS

Dr. Grandin was diagnosed at age 3 ½ with non-verbal autism (infantile schizophrenia). The doctors wanted to institutionalize her, because, frankly, that is all they knew how to do back then. In her generation, it was common to ship off the children that were ‘different’, however having an independent thinking and educated mother who saw potential when no one else did, Temple was given proper early intervention and support which has cultivated a drive within her like none I have seen. Temple is a confident, successful and witty business woman and autism/animal rights advocate.

Busting the myths of autism, Temple and her Mother, with sweat and tears, were able to give Temple the tools she needed to become all she is today:

"Dr Grandin obtained her B.A. at Franklin Pierce College, her M.S. in Animal Science at Arizona State University and her Ph.D in Animal Science from the University of Illinois in 1989. Today she teaches courses on livestock behavior and facility design at Colorado State University and consults with the livestock industry on animal welfare.

Dr. Grandin has appeared on television shows such as 20/20, 48 Hours, CNN Larry King Live, PrimeTime Live, the Today Show, and many shows in other countries. She has been featured in People Magazine, the New York Times, Forbes, U.S. News and World Report, Time Magazine, the New York Times book review, and Discover magazine. She has also authored over 400 articles in both scientific journals and livestock periodicals. Her books 'Animals in Translation' and 'Animals Make Us Human' were both on the New York Times best seller list. 'Animals Make Us Human' was also on the Canadian best seller list.

In 2010, Time Magazine named her one of the 100 most influential people." ~ Michele Gwynn

When a friend informed me that Dr. Temple Grandin, Ph. D. was coming to Ohio State University to talk about dog and horse behavior, I was determined to see her. This is my personal reaction to that evenings presentation.

LIVESTOCK, PUPPY MILLS AND ANIMAL BEHAVIOR

Dr. Grandin’s presentation on animal behavior was intriguing. Every insight she shared… seemed common sense. However, she diligently expressed that when we are in the moment of behavior issues with our pet and livestock it is hard to step aside and see the details that might be triggering the behavior. (Kind of like our kids, don’t’ you think? How many times do we find ourselves wondering, “That was so obvious, why didn’t I think of that?”)

The presentation covered the horror of Ohio being the Puppy Mill Capital of the United States (alarming!!) and that Ohio is 1 of 15 states where it is still legal to auction dogs (sad!!)… The take home message was this: DON’T BUY DOGS/PETS!! Go to a rescue or humane society to adopt… this will put puppy mills and breeders out of business. Aside the fact that we have too many dogs already in the world without homes, I couldn’t conceptualize why we purchase and purposely breed even more? This part of the night was shocking to me. The local groups that sponsored this event shared horror stories about puppy mills and breeding… I don’t want to share those raw details here, but it is down-right tragic and cruel!

Dr. Grandin talked about breeding and genetics. When we try to breed for the best and strongest genes/traits we also get unexpected discrepancies… the best way for me to summarize the ironic message here is that when we try to create superior breeds we end up with the weakest: physical and behavior issues are emerging at an all time high because of breeders interfering with and breeding for the best traits like blue eyes and fertility. Dr. Grandin says that if you want a fancy breed of dog… for instance the Golden-Doodle… Firstly, only get one from someone that can present the mother to you… if the mother isn’t present, don’t get the dog. Secondly, make sure it is a first generation Golden-Doodle… with one parent being a Poodle and the other a Golden Retriever.

The last take home message on this topic was too “test drive before you buy” so to speak. Just because some kids have had success with pets, doesn’t mean all will. Make sure the pet is a good match for child as well as the pet.

THE AUTISTIC BRAIN AND ENABLING

Dr. Grandin has raised the bar with animal care in the livestock industry and she has studied the behavior of animals most of her life. More amazingly, she has been able to give us a peep into the mind of an autistic. This has given Dr. Grandin the rare opportunity to educate the world about the similarity between thought patterns of autistics and animals.

Of course, I was pleased to hear Dr. Grandin talk about this topic (after all that was the main reason I wanted to come to this event). She talked about the autistic mind thinking in pictures and how the autistic mind, similar to an animal’s, categorizes everything. Her insights have helped me to understand my children better and left my tween walking away saying… you know that is how my brain works too. This opened the door to a fantastic conversation about the aspie traits we recognize within her and how this doesn’t change her core.

Dr. Grandin talked about how children today are not ‘pushed’ like she was. And although we have more supports and interventions than ever before, the parents and other significant others in the child’s life today, enable them use their condition as an excuse to not have responsibility and goals. She says that as long as a child can talk, make them talk for themselves. Make them get up at a descent hour and have a productive day. Make them accountable for all they do. Give them opportunities to cultivate the desires, interests and dreams. Don’t use the label “autism” for an excuse.

She further illustrated this point by acknowledging that as a child she loved going to the beach and letting sand drip through her hands… this simple, almost hypnotizing action, focused and soothed her (sound familiar?). However, she stated that if that was all she was allowed to do, then she wouldn’t have been giving the opportunities, skills and determination that lead her to the events in her life that brought her on the stage talking to us that evening. Because her mother pushed her beyond the stimming, she was able to become the successful woman that she is today.

TECHNOLOGY & SERENDIPITY

At one point, Dr. Grandin told several aspies in the audience to use the power of “Google” to open avenues for their own hopes and dreams… she said today’s generation have it very easy in comparison to the what it took her to accomplish her goals. Dr. Grandin said that with all the technology we have today (and gave credit to all the aspies who made THAT possible) that anyone anywhere could open doors easily. She referenced what I term as ‘serendipity’. She said to go out and meet people on social networking sites and present your own work and portfolio. She was adamant that if you met the right person doors would open for you…

(Side bar plug: So, I hope an editor or publishing house sees my blog/writing and someday picks me up… )

Speaking of plugs, Dr. Grandin talked about her HBO movie, Temple Grandin. I loved her enthusiasm and the beam in her eye when she relayed that every fact presented in the movie was accurate; if you want to know how an autistic mind thinks, watch her movie; if you want to know how a cattle chute or livestock yard is run, watch her movie; if you want to know her life story up until she was 30, watch her movie… I believe from observing her body language and the enthusiasm in her voice that she is very proud of not only this movie, but having had a hand in the making of it.

Another thing Temple was vocal about was her drawings. She adamantly stated that it took her 3 years of practice to draw cattle chutes in the manner that she can. And that the drawing in the boardroom during the movie, is an actual drawing of her’s.

CURE VS. RECOVERY

One mom in the audience even thanked her for the insight and inspiration that she offers so many of us! There were several apsies in the audience, one in which asked her about organizations like Autism Speaks. Dr. Grandin didn’t directly answer the question, but instead gave a 5 minute impromptu lecture against the curing of autism spectrum disorders.

She ended the mini lecture with 2 points:

1) If you cured every person who had autistic traits, we would no longer have any scientists or computer geeks to advance our world.

2) If you cured a person of their autistic traits, you would take a component of who they are at the core of their being away.

I have thought a lot about this point over the past 6 years. I do not want to cure my child of the unique abilities and attributes that make her her, but I do aim to soften the challenges that make life difficult. I want to address her functional expressive and receptive communication skills, her dietary needs, her delayed motor skills, her sleep disorder, her raw frustrations, and to curb her inherent need to flee to protect her from bodily harm. (… this list could go on.) However, beneath these challenges, there is a core within her existence… a witty, funny, determined, moody, intelligent, confident little girl that without a doubt will use some of her autism attributes to define her persona and create an exceptional woman who can and will be able to accomplish anything she so desires.

DIFFERENT, NOT LESS

I imagine this is what Temple’s mother meant when she said, “different, not less.” And as I watched this magnificent woman on stage talk with us, I saw how she was different; her rigid body movement, her deliberate gestures & need to put her hands in her pockets at specific moments, her articulation of words, her ability to recite the lecture she certainly was reading from the pictorial memory within her brain, her obsessive passion for animals and the consistent ability to relate the animal behavior to that of the autism. But, I also saw this woman who had a charming sense of humor, a passion for her animal mates, a sense of confidence as she articulated her mastery of the subject at hand, a sense of pride about her artistic skills, and the desire and ability to engage with the audience. Most importantly, I saw a woman (whom I respect and adore) present herself with all her little quirks and nuances with an aura of being exceptional beyond the label of autism.

I am proud to have Dr. Temple Grandin be a role model for my young girls. She was everything I expected her to be and more.

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Lost And Found at the Library

We have worked really hard at trying to integrate our six year old daughter who is diagnosed with Infantile Autism Spectrum Disorder into the community. We have come a long way, but have an even longer way to go.

One of the things I have done to help with this is to take her to the local public library for brief visits. In the beginning, she would run up and down the stacks… I can only recollect once that a staff member got coy with us. However, I believe it was because my older daughter was trying to catch her for me (which could have appeared to be horse play).

Like I said, we have come a long way! Today started off like a typical day for us… We returned our books and movies, and then said 'Hi' to the front desk manager as we headed for the computers in the children’s section. My daughter loves to play Freddie the Fish while I quickly get my reserves (less than 30 seconds). I usually put my stuff on reserve so I don’t have a need to go into the stacks. I then take them over to the computer checkout near the table she is sitting at. This gives her a little autonomy while I am able to get my task done too.

But, today I broke routine... I decided to get a few books that weren’t on reserve. My daughter was sitting quietly on the computer engrossed in her game just like she had in recent visits… I knew I had about 10 minutes before she lost her attention span (or so I thought.) I asked a librarian to help me find a book on pioneers for my other daughter. I was in a stack just 5 aisles over for less than 20 seconds … and she was gone! I even took a double take!! I spun around in a circle and she was no where in sight.

In an instant I decided to go immediately to the front desk, “I can’t find my autistic daughter…. She is 6 years old. I am going to the parking lot to look.” I can’t remember the librarian’s exact response but I am sure it was something like, “I know who she is… Go, we will look inside.” And then I was bolting out the door!!

I ran to the jeep and scanned the entire lot… she wasn't there. I was relieved for a split second, and then more fear filled me. As I ran back towards the library I saw a staff member at the door gesturing to me as if to ask if I found her. When I shook my head ‘no’ she hurried away!

As I reentered the building, I was amazed; every staff member had been notified and they were looking for her in the bathrooms, meeting rooms, stacks, under tables and even around the perimeter of the building. The manager told me to stay by the front door to be sure she didn’t get past us… I told her immediately, “She has on a red Hanna Montana shirt with a purple skirt and has short brown hair”. The next thing I knew I heard my words echoed by 5 people… “She has on a red shirt with a purple skirt and has short brown hair.”

Time was suspended as I watched the staff work together! I found myself thinking about that GPS Locator I got in the mail yesterday… it was still sitting on the charger. (Mental note to self: get that up and running ASAP.) Then my mind wandered to the worse scenario… so I told the manager I was going to go look in the parking lot again. She told me it was best if I stayed where I was at the entrance (the only way in or out of the building).

I took a few deep breaths to center myself and agreed. Then out of the corner of my eye I saw my daughter walking beside a staff member towards me….I ran to her as she looked at me like, “What?”

She had been sitting on the ground safely looking at videos the entire time. After I thanked everyone, my daughter guided me to where the staff member had found her. Apparently, while I was initializing a full fledge search for her, she had been innocently looking for a video to check out. She picked up her video, went to the check out counter, and then walked calmly beside me to the jeep as if nothing happened.

As I sat there for a few minutes, several thoughts came to mind about what I did right…

1) Instead of looking for her by myself, I went and got help. This was difficult to do. My urge was to run through the stacks and start yelling her name. However, when your child is non-responsive verbally this would have done us little good.

2) I gave the staff a description of my child. Due to sensory issues my child changes her clothing daily dozens of times. However, I am always keenly aware of the last change of clothing… just in case!

3) I didn’t panic. Again, when you have a special needs child this is easy to do. When I did begin to have racing thoughts… I remembered to deep breath.

4) I listened to instructions from the manager in charge. This is difficult to do when you are used to be the ‘driver’s seat’ with all aspects of your child. But, by listening to her I knew that one person was in charge and that they were following an obvious protocol.

5) I stayed at the entrance. There was no way she was going in or out of that building with out my knowledge.

(A special thank you to all of the staff at The Columbus Metropolitan Library - Hilliard Branch where I, also, host a monthly Autism Support Group.)

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Autism and Elopement: Finding A Sense of Hope

Wandering

Elopement

Running

Flight Risk

If you have a child on the spectrum these words might elicit strong emotions within you ~ No words can completely grasp the sinking sensation within your being when you cannot locate your non-verbal child!

I hear autism parents chuckle all the time that they are the only ones who lock doors to keep their children inside, instead of intruders out. It is true. If Sahara gets away from me (inside and out) she will not respond to the question, "Sahara, where are you?" We have resorted to chains on doors to give us some peace of mind... that is until she learned how to use the broom to unlatch the locks. She is not only intelligent, but cleaver!!

She has left the house at night once and it was horrifying!! But, it is just as alarming during day light. One time we found her in naked in a tree house near a neighbor's pool. Your stomach falls and panic fills every cell within you. You aren’t sure if you should run in to get the phone to call 911 or if you should start running through the neighborhood. (I have done both!) When your autistic child is non-verbal and out of your sight it is an indescribable experience!

There are horror stories in the news almost daily: Autistic Adult Missing, Austistic Child Found Alive in Swamp, Autistic Resident Found Dead In Van… these are the headlines that keep me up at night (and I mean that very literally)!! This is a constant fear in the recess of my mind and of the mind of many parents with children on the autism spectrum!!

In fact, just before I sat down to write this blog today, I read a news article from Wichita, Kansas where a 5 year old autistic boy was found in a neighbor’s pond, just 30 minutes after his adult sister noticed he was missing. He was in critical condition, but later died. Tragic!! I pray for this family as they go through the unthinkable!

And I pray for all other families that are on the spectrum facing this manifestation of autism!

This is the kind of story I shared with my daughter’s school during our last IEP meeting. I was attempting to make a case for a one on one paraprofessional for safety purposes (in addition to the academic needs). The school is situated near a busy road and there is a pond on the property. The teacher said, “Well, I know you have problems with that at home, but at school she has never tried to run.” Aside the obvious contempt and judgment within her statement, the fact is it only takes once for a tragedy to occur!!

I decided that if the school wasn’t going to cooperate with us, then we would take matters of safety into our own hands. I started researching GPS locators… they weren’t cheap! (Remember, hubby was downsized and we had had no income for 7 months!) So, I called my daughter’s Developmental Disability Case Manager and inquired about funding… she said the family respite services would fund it!! The Caveat…. we would have to forfeit her music therapy allocations for the whole quarter!!

Well, that wasn't a viable option.

At about the same I happened to see a contest posted on facebook via the Autism Women’s Network. They were giving away a GPS locator and one year’s worth of service to an autism family. What could it hurt to try to win this, right? So, I emailed them at info@awn.com to tell them our story.

Our life possibly changed completely via one phone call this morning...!!!

I just sat down with a cup of coffee this morning as the phone rang. Of course, I cannot find the receiver… welcome to the world of tween-dom. The machine picks up and I hear an unfamiliar voice, but immediately recognize the name, Tricia Kenney with the Autism Women’s Network. I sprint to the living room and find the phone on my daughter’s desk… and answer.

I WON THE GPS LOCATOR FOR SAHARA!!

I am not even sure what I said to Tricia this morning. I was stunned. This is a VERY VERY EMPOWERING FOR ME, SAHARA, HER SISTER AND FATHER... THE WHOLE FAMILY!!

As I sat in the lobby of Children's Hospital this morning (Sahara was in thearpy), I thought about all the places and things we could do...

THE ZOO

COSI

FRANKLIN PARK CONSERVATORY

LIBRARY

FAIRS

THE MALL

GROCERY STORES

PLAYING IN THE BACK YARD

TAKING A WALK

PARKS

FRIEND'S HOUSES

SCHOOL FUNCTIONS

VACATIONS

... and the list goes on.

I think about how much we don't do in the community, because of fear of losing her in public! The stress we have between my husband and myself because we are under the constant stress of who is 'watching' Sahara. The sleepless nights because of the fear that she will walk out of the house. The obvious unjust responsibility that her sister burdens. The gut wrenching agony I have when I worry about someone nabbing her.... or worse!!

And as I think about what this simple, yet phenomenal devise will offer us.... I am filled with hope! I am thinking today about how we will be able to teach her better community skills and how we will be able to have more childhood opportunities and fun as these raw fears vanish.

Even the basic ability to be in a different room from her gives me relief... not only for my sanity, but for her personal growth and autonomy. When we were kids we went outside and we learned boundaries, we explored our environment, and we developed real self-regulating skills. Sahara has never had that opportunity... nor has her sister for that matter. Wow!! I am eager to see how this will play out...

Thank you Sharon Da Vanport and Tricia Kenney of AWN!!

Thank you Autism Women's Network!!

Thank you LifePROTEKT!!

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A Song Reveals An Amazing Gift

Amazing!

I was looking for a song to post for Father's Day on Facebook for my wonderful hubby... being he has 2 fabulous daughters, I immediately went to you-tube looking for Paul Simon's 'Father and Daughter'.

As I listened to the words, "I believe the light that shines on you, will shine on you forever" .... "There will never be a father who loves his daughter, as much as I love you," I knew this was the song.

So, what is so amazing about that??

As I was listening to this song, Sahara booted up the computer, went to the right drive and selected our backup file for The Wild Thornberrys Movie. Firstly, we have 4 drives on the computer with 100's of files. She was able to pick the appropriate drive and find this file among all the others with zero assistance. Amazing!!

Secondly, If you don't know... Paul Simon's song Father and Daughter is the theme song for this movie. So, not only did she find this file, she found it because she recognized it while I was listening to videos on you-tube.

Amazing!!

I have to wonder... is she reading the words on the computer files or does she have them pictorially memorized? She is just entering the world of communication and although I read to her I do not think she can read.... or she can and I don't know it yet?

Any way it is amazing... if this child can memorize this many icons and files and know where each is categorized... what a gift she possesses. I think this is an answer to my question... should we revisit her picture communication program? This is a most astounding YES!

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The Coffee Klatch presents Temple Grandin

The Coffee Klatch (TCK) is a real time twitter chat room founded and moderated by Moms of special needs children. TCK brings knowledge and empowerment into front rooms across the globe. I have found other mothers (and fathers) to be my best resource in advocacy, education and support; and TCK ranks up there with the best! Visit their web site for more information and transcripts from former shows.

Last night TCK had TEMPLE GRANDIN as their guest! I have posted some of my favorite tweet-quotes from the interview below. I do not intend to take away from the whole interview process nor do I mean to take anything out of context, but wanted to pull out some of the concepts that seemed to me to be important to emphasize. Please note, I still encourage you to view the Full Transcript from the Temple Grandin Show here.

My Favorite Temple Grandin tweet-quotes from TCK interview:

ABOUT SPECIAL DIETS

"yes it cleared up my yeast infections - I hav ecut huge amounts of suger out of my diet - with success and I talk about it in "the way"

"Im doing wheat free myself"

ABOUT INCLUSION IN SCHOOL

"You have to look at your particular situatin in your school - you might want to look at "unwritten rules of social relationships"

"there are some aspergers kids that get tortured in high school and may need to be taken out but - I am much more of an advocate for inclusion for elementary school kids - I want to emphasis that decision about this depend upon many unique variables with particular"

ABOUT MEDICATIONS

"the big mistake with antidepressants in the autism spectrum is too high a dose. some need only 1/4 to 1/2 the starter does - they are microresponders and you need to read the book very very carefully"

ABOUT SIBLINGS

"Find shared interests that they can enjoy together like painting pictures playing games sports any activity they both enjoy"

ABOUT DSM IV & DIAGNOSIS

"Aspergers according to dms IV is minor autism with no speech delay - it is not a seperate disorder - autism is a continuum to veryfrom mild and a little nerdy to no language and severe problems - Einstein in todays school system would prob be labeled autistic"

"According to DSM IV guidlines I would be HFA because I had speech delay"

ABOUT SPEECH DELAY

"I recommend that they read the book "How can I talk if my lips dont move. It is written by a person that is non verbal with autism - written Tito anybody working with non verbals should read that book"

ABOUT THE DIFFERENT WAYS WE LEARN

"You need to build on the childs area of strength."

"photo realistic visual thinkers like me are very good at art design drawing and graphics but I am really bad at algebra -some visual"

"the second type is the pattern thinker - or music and math mind - it is a more abstract form of visual thinking - these children may. thinkers can do geometry and trig"

"the third is the word mind - these children know huge amounts of verbal facts about their favorite subject "

ABOUT TEACHING

"Never taught in the abstract it has to be taught with specific examples"

"Mother told me to take my turn - turn taking was taught using board games -to understand the concept of turn taking I had to learn it"

"He took my interests and channeled them into motivating me to study - good teachers build on a child interests if a child likes trainsteach reading with trains math with trains - you want to use the motiviation of the fixation to motivate academics and career work"

ABOUT SOUND SENSITIVITY

"sometimes the sound sensitivity can be reduced if the child can get used to the sound on recording and the child can turn it up gradual"

"sound sensitivity - ear plug or head phones can be worn but - they must be off for half of the day to prevent the ears fromgetting more sensitive"

ABOUT TACTILE SENSITIVITY

"tactile - soft clothes that are well washed several times will be less scratchy"

ABOUT VISUAL SENSITIVITY

"two other things that help is using a laptop computer which does not flicker and try printing reading materials on pastel color papers"

"interventions- if visual some ppl find colored lenses are helpful - pale pink blue ligt brown and purple sunglasses"

ABOUT AUDITORY PROCESSING

"sensory probs are very variable - some have aud processing probs where difficulty hearing hard consentant sounds like D AND G"

ABOUT EARLY INTERVENTION

"keep the mind engaged"

"most imp is 20 or more hours a week of 1 to to teaching with an effective teacher. this is for very young children from 2 to 5 yrs old - not to stop at 5."

Full Transcript from the 3/28/10 Temple Grandin Show here.

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Back in the Saddle at Riverwind Equine

It had been four long months since we had gone to the horse barn… you could feel a calm excitement in the jeep on ride there. As we pulled up Sahara yelled, “There it is!!” Emily clicked off her seatbelt and eagerly reached for her helmet and bag of apples then disappeared.

As we walked down the broken concrete path, we were met by a wet, cold, muddy day. Nevertheless, there was complete life emerging before our eyes. New horses stuck out there heads and nodded at the new people that they had yet to meet. The old ones looked up with a certain relief to see that part of their herd had finally returned.

It did not go unnoticed that many things had been tended to throughout the winter; there was a certain sense of aliveness brewing on the land and within the structures. I immediately feel enamored by the beauty of the barn, the peace it emitted and the mindfulness of all the people that congregated on this land. Each of them have uniquely become a part of our family.

The head of the Arabian herd, Silk, was so pleased to see the children. He seemed to take extra care in his footing and movements today. Emily confidently started with a walk which quickly turned into a trot and moved Silk over the 3 poles with grace. Her cantor and post was shaky a first, but the concentration and determination paid off. As she dismounted Silk, I realized that I hadn't had to walk or look away once. This meant that I either found peace within myself about my child riding this one ton creature or they worked so well together as a team that fear did not beckon me... I suppose it was both.

Silk looked at Sahara with intensity when it was her turn. She mounted him and said, "Yee Haw." They walked a few laps and surprisingly I did not have an urge to nudge my husband to walk beside them. She melted into the saddle and had such poise; her body moved with grace with each step and bump. We all laughed as they rounded the gate and heard her say, "Run, run!!" As the horse came to a stop, she spoke fluently again, "More..... Walk On." Last year at this time, Sahara's expressive and receptive language was limited at a 12 month old's ability. To hear her request that she continue her turn and to give oral commands to this beautiful Arabian Horse was music to my motherly ears.

I whole heartedly feel blessed to have this horse in our lives and treasure the moments like this one that will be forever be embedded in my children’s childhood memories. I am sure that the girls will vividly look back to their horse barn days at Riverwind Equine Boarding like I do fishing on Lake Erie aboard the Sea Breeze with my father at the helm in his faded jeans, white t-shirt and red baseball cap while my mother sat in her chair at the stern with her oversized hat and sunglasses.

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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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F@#k You, Mommy.... a.k.a. I Love You!

I LOVE YOU... Three simple, yet complex words!

They may just be the most powerful words in existence; yet, so many take them for granted. How often do you utter them in auto-pilot? Or colloquial speech… Love Ya?

The first time Emily said “I love you” she used the wrong words; it wasn’t what she said as much as it was the tone, the face expression, and the endearment behind them that allowed me to experience what she meant as she uttered, “Fuck You, Mommy.”

SCREEEEECH…. WHAT?!?!?

Yep, she looked me straight in the eyes and with all of the tenderness she could summon, in her sweet little voice, she uttered, “Fuck You, Mommy.” I am not sure where she learned that, but she used it in the most innocent loving expression and in an instant I knew she meant I Love You.

After I explained those were not nice words, I gave her the appropriate words to use. Somehow over time we took for granted that she had words to express. That is until Sahara came along and never found hers.

Yes, she can tell me she loves me through expressions and actions… but a mother longs for those three sweet words.

This all was the furthest thing from my mind today at the barn, but as we were leaving the stable, Sahara gestured for me to pick her up. I lifted her up into my arms and out of the blue those sweet sweet words filled my essence, “I OV YOU, MOMMY!”

Again, the words weren’t perfect, but none of that mattered for the second time in my life as she said, “I LOVE YOU, MOMMY!” with tender sincerity.

I, often, hear others insinuate that people with autism are incapable of expressing emotion or engaging in meaningful relationships. I am here to tell you otherwise; I LOVE YOU, MOMMY… spontaneous, un-solicited, functional, compassionate sweet sweet words.

Another milestone achieved!!

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NEVER Brush Face, Chest or Stomach

What would you do if you found out you were given a treatment protocol to do with your young child at home without knowing that there were specific instructions that you needed to take? And that the precautions were not addressed with you before, during or after you began treatment? In fact, you didn’t know that there were any warnings associated with a seemingly safe procedure until almost a year later!

Remember the old speech and occupational therapist that I fired… their lack of professionalism continues to haunt me. Yes, I know you thought I laid this to rest; honestly so did I… but here we go again! Only this time I am asking the question, “What do I do with this information?”

Recently, we ventured to Nationwide Children’s hospital to obtain a formal occupational therapy evaluation. During the interview I was asked about previous OT exposure. I refrained from saying what was really on my mind. Instead, I let her know that there were unprofessional circumstances that prompted her dismissal.

Somewhere during this evaluation the evaluator asked about a sensory diet.

“A Sensory What?!?!”

I responded, “The former OT never mentioned a sensory diet to me before… she mostly gave Sahara dittos and puzzles to complete coupled with jumping on a rebounder and balancing on a balance beam. In fact, when I told her I read somewhere that my OT should be able to help us with eating issues she just looked at me like a deer in head lights… that is when I started to question their ability to effectively treat Sahara. “

The evaluator said that she had seen other children with similar sensory issues as Sahara and that she thought she would highly benefit from this sensory diet. She said that we should start by teaching us how to do brushing. I responded, “Oh, well, the old OT did do that much. She gave me a little white surgical brush to use on Sahara when she felt agitated… I was instructed to stroke it on her at my own discretion and to try it on myself because it felt good.”

I didn’t understand the expression on the evaluator’s face; but it was clear something in my statement rubbed her wrong.

She continued to explain that ‘brushing’ was formally known as Deep Pressure/Porprioceptive Method Protocol for Sensory Defensiveness. I was then given a handout explaining this protocol and the instructions on how to do this which included the statement, “Only complete if you have been instructed by a trained therapist!”. It also included specific areas of the body not to use the brush on; “NEVER brush the face, chest, or stomach.”

Why was I never told this last fall when given the brush to use at home by the old OT?

As we discussed this further, I was informed that after carefully stimulating the specific deep pressure receptors of the skin you are suppose to do joint compressions (both in a set sequence) on the child to reset the nervous system. You end the session with heavy body work like carrying a backpack, sitting on a therapy ball, being hugged or anything else that stimulates the child proprioceptively and by stimulating the child orally like eating crunchy food, humming, or using a whistle. Each of these steps has a science behind it and it critical to the entire process.

“IF you rub the brush on the face, head or neck you could stimulate a seizure.”

WHAT!?!?!

Yep, and being that Sahara’s ECG showed epileptic frequencies, this was apparently a very dangerous thing to do without specific instruction. Oh, and by the way, I was informed that if you brush over the chest you could trigger heart problems and over the stomach could stimulate internal organ distress.

I was appalled that none of this was explained to me by the former OT. My only conclusion is that she does not qualify as the “instructed by a trained therapist.” Frankly, I wanted to march down there and rip her a new one, but the rational part of my essence stopped me. But, I am left with this innate pull to do something.

What do you think?

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Narration Inspires Speech

In May I fired our speech therapist for numerous reasons... one of them being that she told me that I enabled Sahara too much and that she wouldn't be talking by the age of 8.

So, with no speech therapist— we enter the summer with two paths to choose from—one was to be paralyzed with fear of losing the little speech we had while the other was to see this as an opportunity to be innovative with natural speech development. Being a ‘glass half full’ kind of mom I decided to embrace the opportunity.

Our new found freedom allowed us to venture wherever and whenever we wanted... but no matter where we ended up we found that there was always an opportunity for natural speech and communication.

We spent 2 months playing and enjoying summer while waiting for a speech evaluation through Children’s hospital. The assessment revealed that Sahara had receptive speech of a 24 month old and expressive speech of an 18 month old. (Note: Sahara will be 60 months (5 years old) on Sunday.) For some this news might be devastating, but not for me.

Instead, we continued to work on labeling everyday objects, comparing pictures, answering WH questions, yes/no questions, and following simple 1 – 2 step directions throughout our adventures and daily activities.

The opportunity for speech expression exists in every activity of daily living; and no opportunity went wasted. Sometimes I found myself mindlessly narrating my day, "I am cutting an onion with a sharp knife, I am putting the chopped onion in the salad bowl. The salad looks colorful… I see red tomatoes, green peppers, purple onions; oh there is a cucumber with seeds. Who’s that? Daddy is home. I missed daddy. Do you think daddy wants salad? I am setting the table. Should we eat our salad in a bowl or on a plate? How many plates do we need? One, two, three, four... there are four people here so we need four plates. Do we eat salad with a spoon or a fork?" Etc…

Narration has become second nature to me. With this constant input I have noticed an increase in her vocabulary and spontaneous speech. I was thrilled, but not surprised to hear Sahara said 13 'phrases' during a 45 minutes session with her new Speech therapist yesterday. Not words… phrases!

I want more bubbles, please.
The cat says meow.
No, doll house.
You’re welcome.
Oh no! It’s dark!
No shoes on.
I want mommy.
My nametag, please.
No no, yucky.
I eat apple on apple tree.
All done, nametag.
Want duck, please.
Moo, quack quack, woof woof, neigh neigh, bahh.

I expect that by the age of 8 she will not be wordless, but having conversations. I look forward to uncovering the things I long to learn about her... like, what she is thinking about when she looks up at the ceiling or what her favorite color is or how she wants her room decorated.

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