Everyday Reiki Class for Special Needs Parents & Advocates

I thought I would post an upcoming event I am facilitating. My 'soul' purpose for this class is to empower other parents and advocate with a simple, yet profound tool we have been using daily with our children for the past few years. If you are in central Ohio I hope you can join us.

THIS PRACTICAL CLASS WILL EMPOWER PARENTS & ADVOCATES OF SPECIAL NEEDS CHILDREN TO USE HANDS-ON REIKI FOR EVERYDAY CHALLENGES.

Reiki is a Japanese healing technique that can be performed in a variety of ways promoting ease and relaxation for the participants.

Be prepared to learn what Reiki (energy) is, how to use it and how its application can assist in the daily challenges of the special needs family & classroom.

Other material covered will include how autism and other disorders are related to the CHAKRA SYSTEM and how MEDITATION & the POWER OF INTENTION can dramatically effect our children.

Dress in comfortable clothing and bring a yoga mat or towel to lay on during the hands-on exercises. Refreshments will be available.

WHY I OFFER THIS CLASS:

They say pictures speak a thousand words.... The left pic is my daughter when she was in an autistic state of catatonia (Note the distance in her eyes). The right pic is 4 months later after consistent Reiki/Energy Work.

http://www.facebook.com/ph

oto.php?fbid=1015029004727

0440&set=a.101502900470454

40.540810.329192760439

DISCLAIMER:

Reiki doesn't cure Autism Spectrum Disorder, ADD, ADHD, ODD, PDD-NOS or any other emotional/physical conditions, however by alleviating some of the major energetic stressors in these very sensitive children, overall calming effects can take place without interfering with conventional treatments. In fact, we have found some of the more traditional therapies to be more effective in conjunction with Reiki.

COST:

Cash or a secure payment via paypal... please reference the email: LadySusan@sbcglobal.net

$100

IF you have a medical card or receive county funding, let me know... although I do not accept those funding sources (yet) I will offer you a discounted rate.

ABOUT ME:

Susan E. Richardson, BS ~ Art Therapy, MRC ~ Counseling, Reiki Master

I have a unique background in counseling, holistic wellness and a variety of energy healing modalities. I have been compassionately leading experiential groups and classes for 13 years. I use Reiki daily with my family and have seen miraculous changes in my daughter on that is on the autistic spectrum with consistent Reiki. My goal is to share this information with others so that they may experience similar results.

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Book Review: A Course in Weight Loss

A Course in Weight Loss

21 Spiritual Lessons for Surrendering Your Weight Forever

By Marianne Williamson

Our body image… or rather our perception of our body image can be fundamental in the development of positive self-imagery within our children and teens. It is vital for us to model not only a positive sense of self, but to work through the emotions, traumas and experiences that might have contributed to our weight gain. This process will unleash the opportunity to mirror to our children solid foundations for a healthy imagery of their own.

I am not suggesting going on a diet and making positive affirmations in the mirror every morning. Besides the concept of a ‘diet’ being a charged utterance triggering emotional responses, ‘diet’ also implies a magic bullet that when combined with unnerving willpower, can get you to your desired weight; leaving you with the faulty expectation that the issue is resolved prompting you to return to your former lifestyle without further action… setting us up for huge disappointment and often failure… only further compacting the psyche of ourselves (and our kids) around body image.

I suggest a new refreshing approach… one that will lovingly persuade you to go introspective into the heart of your real weight issues: Marianne Williamson’s A Course in Weight Loss ~ 21 Spiritual Lessons for Surrendering Your Weight Forever. This is not a quick fix program. In fact, I venture to say that this program that must be done full-heartedly and precisely as Williamson presents it in order to obtain all of the growth and benefits that it suggests.

Without hesitation, I will firmly adhere to the stance that if you mindfully work through Williamson’s lessons addressing the physical and emotional issues residing within you, you most certainly will obtain true optimum health; a balance of physical, emotional and spiritual expressions of the self … which is really the goal right? And as you obtain this definition of true optimum health, you will be well on your way to your desired weight and physical goals without scales, diets and intense exercise regiments.

In Marianne Williamson’s A Course in Weight Loss, she not only addresses our self image and emotional experiences around our weight, but interlaces a deeper healing tool; 21 spiritual lessons that are intimate to the root of your weight issues. As we heal on this spiritual level, our pain which has been encoded on a cellular level is released. This is when and where true healing takes place.

Like Williamson, I believe that our life experiences can be held in the energetic essence and cells of our bodies which then manifests our physical form. As I explored her 21 spiritual lessons, I found myself facing life experiences that undoubtedly resulted in my weight gain. I inadvertently unveiled parts of me that had been dormant within my core for decades that had originated before being overweight was an issue... in fact, they stemmed from when I was dramatically underweight. All in which most certainly contributed to my current self-image.

You can explore these concepts at your own pace; discovering and growing beyond your weight issues… while uncovering the defenses that have unconsciously masked your pain as unwanted pounds. As you venture through this process you will begin to Remember who you really are… a spiritual being, perfect in the eyes of God and deserving of the ideal body you desire.

At the end of each lesson, Williamson presents a reflection and prayer. I believe this is the where the ultimate transformation really takes place. After the sometimes raw self-exploration is complete, you find yourself sitting in silence mirroring your true self stripped of the labels, expectations, defenses and manifestations of your life circumstances. It is in this moment of the lesson that you embrace the authentic you which allows real change to occur.

As we obtain our ideal weight and heal from our past wounds, we provide our children with healthy self-imagery. And it is in our positive sense of self that we can create within them unlimited opportunities to embrace healthy choices and processing of their life circumstances.

“Marianne Williamson is an internationally acclaimed lecturer and the best-seller author of numerous books. To learn more about her work, and to join her e-mail list for notices regarding her lectures and events, visit her website: www.marianne.com.”

Hay House

Amazon

Barnes & Nobel

Chapters Indigo (Canada)

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Psst... Guess What??

I have a new love interest...

Yup, It's true and it all started this past summer.

I was passing another kidney stone while at Mamapalooza Columbus. I had taken Percocet the night before with no relief. After a sleepless night, I told hubby (as a committee coordinator) I was going to the festival regardless of the pain or not… besides being up and moving was the best way to get this stone to pass naturally.

At the festival, the stone caused a constant dull pain with moments of sharp jabs. I walked around with my hand on my side… I think 2 people (including a MD) asked if I was pregnant. (**shakes head**) The MD advised me how to clean up my diet to prevent more stones, but that wasn’t going to rid the pain I had in the moment.

I happened to stop at the essential oils booth and was talking about autism (Of course!). I found out they had an autism protocol… completely skeptical, I kindly took some info and walked on. However, If you know me, you know that I am inquisitive… so as the day went on I went back to this booth numerous times to ask questions about this “autism protocol”.

Finally, early afternoon, the girl at the booth asked if I was okay… I nonchalantly said, “You don’t happen to have anything for kidney stone pain, do you?” She gave me a smile and said, “Let’s find out.” She pulled out this huge reference guide to Young Living’s Essential Oils and was flipping through the pages…

“Here try this… Eucalyptus Blue.”

I put 1 drop where my pain was, talked to her briefly some more about the business side of the company… and moved on. About 15 minutes later I was chatting with another vendor who complimented me on how good I smelled… I chuckled and pointed to the oils booth and said, “It is an oil from their booth. Apparently Eucalyptus is supposed to help with kidney stone pain………Holy Shit… My pain is completely gone!!” Why is this so amazing... read this, this and this about my chronic kidney stones.

TRUE STORY!!

… and that is how I found out about Young Living’s Medical Grade Essential Oils.

Since then I have tried other oils with amazingly similar results.

Eucalyptus Blue… 1 drop continues to eliminate the pain the comes with my chronic kidney stones. However, this weekend I applied some with olive oil on my daughter’s chest and back and within minutes her croupy cough subsided and she was sound asleep for the first time in 2 weeks.

Thieves… Said to have anti-viral, antiseptic properties... Weber State University (Ogden, UT – 1997) studies showed anti-bacterial effectiveness against airborne microorganisms. Like I said, my daughter has been pretty sick for the past 2 weeks; fever, croupy cough, aches, pains, ear ache, etc. After 3 applications of thieves on her feet, she was up and walking about… slowly, but was up nonetheless. Oh, and this morning I ran out of laundry soap… we already had those magnets you can put in your washer, so I used those with a drop of the Thieves oil and ‘wa-la’… clean nice smelling clothes without the use of harsh chemicals. Have to love it!!

Peppermint… We have used for indigestion, muscle pain after falling on the ice, and for mental alertness.

Lavender… 1 drop on a cotton ball put in our daughter’s bedroom and she is asleep within 30 minutes. This is our ASD child that has had chronic sleep issues since birth!! We have also used this one for muscle aches and ear aches.

Peace and Calming… 1 drop on a cotton ball in the Master Bedroom melts away the stress of the day for myself and hubby. Have also used this over the liver (Blue Tansy is said to cleanse the liver.)

Valor… A few drops mixed with olive oil rubbed along the spine is fantastic… they don’t call it a chiropractor in a bottle for nothing… love love love this one. I have also used this one for grounding myself before reiki sessions and for self-confidence building for myself and children.

So, these are the testimonies I have so far in my own household… I plan to document more on this blog as we explore more. In fact, I am so excited about the outcomes that I have signed up to be a distributor… but be sure that that isn’t because I am looking for a quick buck… this product line is exceptional and meets my standards and ethics.

Oh, and about that autism protocol… I haven’t done anything with it yet, but am still looking into it. One of my concerns was that Sahara doesn’t like to get wet (sensory issues), but I have found that putting the oil on a cotton ball or on her feet works well. I am going to a class this week to hear a mom talk about what oils she used successfully with her ASD child… I will let you know what I find out on another post.

In the meantime, if you are interested in learning more visit http://www.youngliving.com . If you decide you would like to place an order, would you be so kindly to reference my number 1183617

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An Autism Halloween Adventure: Beggar's Night, The Lost and Not Found, & Nerds at the ER

I LOVE Halloween… I always have… constructing the costumes, organ themed music, bats and black cats, haunted houses, pumpkin patches and beggar’s night… SCREETCH… BEGGAR’S NIGHT… THAT IS WHERE OUR STORY BEGINS (and hopefully ends)!

This year was just as ordinary, yet profound. Let me explain, about 2 weeks ago Sahara started asking, “Trick or Treat, Yes?” Which is easily translated into, “Can we go Trick or Treating Now?” Up until this moment in time she has shown little to no interest in this particular activity nor has she had the speech to ask for it in advance… all huge milestones. So we created a visual aid to help her count the past 15 days… the excitement was building as we approached Beggar’s Night.

All morning she repeated her daily schedule over and over until she got to the part where she said, “Trick or Treat, Yes?” and would look at me with anticipation to confirm that today was the day! “Yes,” I would excitedly repeat, “after school… pizza… then trick or treat!” And she would smile and say, “Okay!”

[Fast forward… to the main event]

As we were getting ready for the big event, Sahara eagerly helped with her costume assembly… which the girls had helped me for the past 2 months construct… Golden Skirts and Tops with Egyptian Hieroglyphics sewn along the hems, head bands with golden coins dangling across their beautiful foreheads, with white capes… at the last minute we had to add a long sleeve black shirt and hosiery to keep warm. They decorated their already beautiful eyes with thick Egyptian black lines which turned into fancy swirls and golden (yellow) eye shadow.

The girls danced around me and wrapped me with toilet paper and drew even darker circles around my already tired eyes. Daddy threw on all black clothes with a golden sash… okay, that one was lame, but we ran out of time with our “Egyptian Family Theme” and his costume took the brunt of it. (Honestly, I don’t think he minded at all.)

So, it was cold and windy… but we trailed along in awe over the moment of normalcy both children were partaking… I say “both” because although Sahara was fully participating joyfully, cognitively, and with cleverness (she was successfully focused on how many Hershey bars she could capture tonight) … Emily was also indulging in a children’s activity without worry, and domination (which is partly the result of having a special needs sibling… she is always the one to control a situation in a life full of events that she has no control over). Laughter filled our little family bubble!!

Emily exclaims, “Look Mum your family tree!” as she points to a tree that had been toilet papered. Even more laughter…

[Fast forward to the last house]

Emily is chatting and smiling about how Sahara got more candy because she didn’t understand the rules of taking one piece… and I am laughing not only because what she is telling me is true, but because we are having a carefree moment... Then suddenly I hear a faint “CLINK”… I snap my head up and she says, “Your wedding ring!! IT’S GONE!!”

“What!?!?”

“It was on my finger, and now it is gone!”

I stay calm… let’s face it… I am not one of those women who need a ring on herself or ‘her man’ to identify that our hearts belong to each other… we have been through way too much together to have a piece of jewelry define our love, passion and respect for one another. In fact, that is how Emily got the ring. I haven’t worn it in 7 years (he hasn’t worn his since, well, probably our honeymoon 15 years ago). She found it a few weeks ago and thought it looked nice with her Golden Egyptian costume. I told her time and time again not to wear it outside, but to no avail she snuck it on to complete her costume. I suspect that deep down somehow having both rings (his and mine) brought her peace within her never-ending chattering mind… she has a deep need for connection with us.

[Back to the story…]

We got a flashlight from the lady at the house we just went to… NO luck! So my wedding and engagement rings lay resting upon the earth somewhere in the neighborhood… an omen? I think not! Did we punish her? I am certain that there is NOTHING I could have said or done to make her feel any more remorseful and horrible than she already felt… sometimes we are our own worse enemies… I am also certain that she fell asleep crying last night… the ring really meant more to her than I. She new someday it would be handed down to her(being our oldest daughter) and that hurts deep. We will go back out today and retrace our steps, but I am sure it is gone…

[The Loot…]

As the children went through their loot, we cringed at the amount of hfcs and dyes lying on our floor. We knew the kids would ingest more tonight than they had all year combined, which is why I always let them take the day after Beggar’s Night off from school… up late + jacked up on candy + tired = pajama day!!

Emily was still pouting about the ring while sorting, organizing and lining up the piles of candy in front of her; Daddy was upstairs changing into comfortable clothes; and I was on the phone with my sister talking when I saw Sahara dart out of the bathroom and into the kitchen. I got up to follow her and saw she had tweezers by her ear… I asked, “What are you doing?” She replies, “Ear!” “NO Sahara, we don’t put tweezers in your ear,” I see a flash in my head of her lying in my lap as Jim successfully pulled a dried pinto bean from the sensory box from her ear months ago…

HALT!

I listen to my gut and look in there… I think I see something. I quickly tell my sister I have to go and yell for Jim to come downstairs. I lay her on my lap and sure enough I can see something!! He brings me a flashlight and I see A PINK NERD in her ear… I look at Jim and say, “I don’t think you can get this one!” (Yes, that means we have done this before… why our children like to put stuff in their ears and noses is beyond me, but they do.)

[The ER…]

We have this routine down… but not when jacked up on sugar. The kids are antsy, the waiting room semi-packed full of random kids with face masks (and not the ones for Halloween, the kind you get to prevent spreading your germs). I cringe!!

The triage nurse thinks she can get the Nerd out… we say go for it!! She brings in this plastic pick like tool, swoops and… Nothing!! She tells Sahara to sit up, tilts her head and taps the other side of her head and shakes her head a bit… Nothing!! (Yes, that freaked me just a bit!) Sahara puts her finger in her ear before anyone can stop her and it went back to its original position. As the nurse confides in us that she used to work with autistic kids, she says she will make us a priority on the list to get a room.

Within 45 minutes of arriving we are escorting to a room in the ER. I note it is room 28… Emily’s favorite number... perhaps a good sign!

[Or maybe not…]

The ER nurse come in and attempts the same procedure as the first without luck… Sahara is starting to get agitated and I switch positions with my husband so Sahara doesn’t see my concern on my face. (I openly admit I am not calm in emergencies…. especially when my child is screaming in pain!) This nurse goes to get the charge nurse. When the Charge Nurse comes in she starts talking in a normal manner questioning Sahara... whom I answer for. The CN doesn’t see the nerd and starts to question us, “How do you know something is in there? … Did she Tell you? … If you did see it, what color is it?” She pushes my buttons “… just bc YOU can’t see it doesn’t make us or the other 2 nurses wrong… it is in there! We saw it!”

Nurse #1 looks again… “Yes, it is there [tells her location]”. The CN claims she sees it now and tries to swoop it out with the plastic hook… and makes Sahara’s ear bleed… Sahara is screaming, I am cringing, and Emily is repeating, “What is wrong with you mom?” Over and over again! Jim takes a deep breath and is once again our rock!!

Nurse #1 and the CN leave after discussing our options: 1) try the plastic hook again 2) flush it out with warm water… we choose 2.

[Enter Nurse #3]

“Hi Honey, what were you for Halloween?”

I snap, “She can’t answer you… she has autism!”

She handles my response well… I like her! We discuss with her Sahara’s sensory issues and our concerns about the flush. Sahara hates to get splashed with water and it will cause an instant melt down; she is already in pain, agitated, and emotionally spent. We ask her to let Sahara play with her stethoscope (one of her obsessions) to keep her calm.

[Nurse #3 leaves… Reenter #1 and CN]

“So you don’t want to do the flush,” asks the CN.

Jim impresses me with his calm, “No, we didn’t say that!! We are trying to explain the sensory and emotional needs of Sahara and what she needs to support her during the flush.”

“So, what do you want us to do?”

I ask for a surgical brush so I can brush Sahara first and they look at me like I am nuts!!

“Do you want a wash rag?” asked the CN.

“No, I want a small white surgical brush.”

“We don’t have any.”

“You are a hospital that doesn’t have a surgical brush?”

“Do you want an emery board?”

“NO!! I want a surgical brush… forget it I will just do the deep compression with her.”

“The deep what?”

(I am obviously dealing with nurses who have NO clue about autism or sensory issues. I am stunned since this is the same hospital we get all of our Autism Therapy from!)

They come back with a brush… but not the OT brushing protocol surgical brush… I tell them that won’t do. They leave and I rub Sahara’s skin hard with my hands, and then do joint compression. She seems to be calm.

[Enter nurse #3 and a new nurse #4 with a syringe that is HUGE!]

The syringe looks like it has a needle on it (it is a soft attachment to aim the water) and they start to say what they are going to do. I interrupt them and start to explain it to Sahara in broken phrases. I let her touch the syringe and tip, and she yells, “No, I don’t want to!!” The new nurse explains to us that the CN has told them to accommodate whatever requests we have, so I ask for a weighted vest.

… they look at me with puzzled expressions. I tell them to go to the dental trauma area and bring back a lead vest. They comply. After a few seconds of resting under the weight of the garment, Sahara seems calm once again. They demonstrate on me what they are going to do and water goes everywhere… down my clothes (trigger), on my skin (trigger) to the floor (trigger)… She starts to scream and thrash!!

I pray out loud for the Nerd to just pop out.

I quietly send her Reiki to relax her.

The long and short of it is… After another half hour of pain, screaming, and thrashing the nerd has dissolved from the warm water and is apparently gone. Nurse # 3 & 4 say they will send the CN in to confirm it is gone… we request someone else since we the CN couldn’t see it in the obvious position earlier. They FINALLY send in the attending doctor. He confirms that nothing is in the ear canal anymore, that the drum is red and will be sore, but otherwise she is fine and we can go home.

[When you think nothing else could go wrong…]

I tell Jim to take the kids to the car and I will get the discharge papers… after 10 minutes they arrive.

As I am walking to the jeep, I see Emily and Sahara running and crying. (Still not sure what happened other than ‘Daddy yelled at us’.) Everyone is tired and stressed to the max!! But, we all are able to calm enough to get in the jeep and head home.

… are you ready for this?

The plastic encasement on my key busted in half and the remote fell out in the dark at midnight in the ER parking lot!!

After looking for awhile I say, “F#ck it!! Let’s go…”

“Are you sure… “

“Yep, let’s just go!!”

The jeep won’t start!

Apparently you need the chip in the key remote to start the engine!!

Sahara is whining, Emily and Jim are out retracing their steps and I am trying to decide who to call to pick us up because at this point I am exhausted, my children are exhausted and my husband is exhausted and I just want to go home. I open my door to tell him to call his best friend and the remote gleams under the night post.

...the engines starts, we get fast food on the way home and everyone is zonked by 1:00 am.

[Happy Halloween!!]

Did I mention that Sahara was diagnosed with Infantile Autism on October 31, 2008? I vowed I would not let that ruin my passion for Halloween… like I said at the start of this really long (sorry it is so long) post, “I Love Halloween.”

Here are a few concluding thoughts: Yes, parts of last night sucked, but Halloween still kicks a$$! I have confirmed that I love my husband more today than ever! I don’t need a Rock on my hand as my hubby IS my Rock! My kids are making huge progress and have taught me the power of true unconditional love and for that I am grateful! And I am almost certain that all of my other jewelry is back safely in my room and that nothing else will go into the ear that doesn’t belong there.

Well, kind of, maybe certain…

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Counting Candy Bars & Breaking Stigmas!

This is HUGE!!!

Sahara counted out 5 Hershey bars at the store (ignore that I let her eat candy bars).

So 1 was thrown away because it melted in the car and 1 was eaten in the store while shopping ... she pulled out the remaining 3 just now at home and counted them and said, "1,2,3.... no 4, 5... where 5? Oh No. Where'd it go?"

Yes, that would be my girl doing MATH!!!!

YAY!!

Tears of Joy Here!

That would be the same kid that was catatonic a year ago and the same kid they said couldn't count 3 months ago and, yes, the same kid they said would never be unable to live, work or socialize independently...

Busting through the stigma people!! If you don't believe in energy work and the power of intention and maternal love I am here to tell you it works! Don't let anyone tell you your kids can't do anything... and if they do... prove them wrong!! Sahara you Rock, Little Miss!! You are my greatest teacher!!

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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 Checker, A Cough and A Deal With GOD!

COUGH COUGH COUGH

Me: “Sahara, did you swallow a checker?”

S: “A Checker?”

Me: “Sahara, Did you eat one?”

S: “Yes”

Me: “You ate one?”

S: “No”

Me: “Sahara did you eat this?”

S: No response

Me: “Look at me…. Did you eat this?”

S: “Eat this?”

Me: “Is the checker in you?”

COUGH ***GAG*** COUGH

Me: “Honey are you okay?”

S: Points to mouth then to the checkers

Me: “Is there one in there?”

S: “No eat.”

If you have ever tried to get concrete information from a child diagnosed with autism compromised by a severe speech and communication delay, you know just how frustrating (almost on the brink of infuriation) that this type of a scenario can be. You don’t know if the speech you are hearing is echolalia or if the gesturing is part of a game or if it is telling you something.

You feel your energy begin to swirl… faster and faster into a panic. You lose your thoughts to your fears… and cannot think straight. You can’t remember if you heard a cough earlier that day and your mind can only embrace the worse possible outcome.

On the ride to the hospital emergency room, the silence is broken by this gaspy cough… then all is quiet again. It is a busy night in the ER! You register and sit down wishing that no one else was in your midst, certainly all the other parents are thinking the same thought; begging in their mind for their child’s aliment to be more important than the next to get the care they need first.

After an hour, you get called into triage. The nurse is annoyed because she has had to print out a third wrist band for your child and because of the sensory issues you know it won’t be the last. You say you will keep it on your wrist, but are quickly put into place and told it has to be on her body. Your relief of being in triage is quickly replaced with exasperation when the nurse redirects you back to the waiting area.

As you sit there you can identify with the other parents; all emotionally tired and frustrated. Suddenly you see a man come into the ER entrance with a gunshot wound. Whispers are contagious among the parents. You sit there with the fresh images of raw flesh held up in the air with a bullet wound dripping in crimson red. You unsuccessfully try to ground yourself.

The kids have to go to the bathroom, but the policewoman redirects you to a long corridor; they are guarding the gunshot victim and interrogating people at the bathroom entrance. You try to explain what is happening, but your kids have no clue what the word ‘gang’ means and have a difficult time following any explanation.

In the bathroom, your child begins this unnerving whine… you forgot to grab her special towel that she uses to wipe herself after going potty at the house. Her sensory issues are becoming even more agitated. You begin to doubt your decision to drag the whole family to the ER… it has been 2 hours since she supposedly swallowed the foreign object and she seems fine (fine, that is, other than this hoarse cough).

You wait awhile longer, and then they call you to a treatment. One nurse, a resident and a fellow later you are told they are going to do chest and abdominal x-rays. However, it is explained that the plastic checker will not show up on a film, so they are just looking at the integrity of the lungs, esophagus and abdomen. You agree to do the x-rays and are directed to another wing where you wait another 30 minutes.

You are relieved that your child is pretty cooperative for the x-rays as you stand next to her in a heavy lead apron. You wonder if the gown was comforting to her and as she seems to melt into the cold glass x-ray table. Back to the waiting room, then to the original treatment room and finally at 2:00 am you are told that there was nothing to show concern on the films…. However, that doesn’t mean that there isn’t a checker still in her esophagus. It is thoroughly explained that the concern now is the checker being sucked into her lung if it is indeed lodged into the esophagus. If you suspect this is happening you are instructed to call 911 immediately… this will be notable if she begins gasping of air. You sigh knowing that is the sound of the cough that triggered this whole wild goose chase.

Discharge papers take another 30 minutes to arrive. Your oldest child is overtired and snipping at everyone. The patient’s sensory input is on overdrive and is now pacing the halls and pushing the automatic door buttons. Daddy has an intense look on his face that even makes you shudder and you, well, you have completely shut down. Your family has had it and is exhausted and ready to get home.

The kids fall asleep on the way home. Your child wakes every 20-40 minutes the rest of the night with this hoarse gaspy croupy cough. You don’t dare fall asleep as the fear of suffocation has forced your eyes to stay awake. You are constantly questioning yourself whether it is just a cough or the checker moving.

You are exhausted! You are tired, and I mean not just on a literal level, but on a deeper more profound level. The manifestations of the autism has taken your strength and you lay awake pissed about your plight… thinking about how it would have been easier if your child could just have said whether or not she had swallowed the fucking red checker in the first place.

As you focus on the hoarse breathing of the limp child laying in your arms, you begin to beg for God to make the Autism just go away. You pray for her to find her way out of its grasps so she can have a functional, productive life. You pray for that miracle that will bring your child her speech and functional communication with the morning sun, so you don't have to guess anymore during another crisis.

And in the depth of your quiet heart you pray that she will simply make it to her next birthday;

Then in the recess of your mind you begin to search for the cure that will simply make her 'normal';

Finally, in the seat of your soul, you strike a deal with God that He will simply and miraculously heal your child tonight...

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Unity Among the Autism Community

On the eve of April - Autism Awareness month, I feel compelled to get this off my chest. See I have been holding my tongue for some time and I absolutely cannot stand it anymore. The ‘infighting’ among the autism community grates at my inner core and I find myself needing to come forth in order to release the charged feelings I am experiencing ... I understand it may not do any good, but at least I will have said my peace.

At a time when autism numbers are soaring, we need the mainstream folk to become involved. And yet, our own community cannot support one another despite our differences … How, I ask, can we possibly expect others to take a stand and advocate for us, when we can’t do so for each other? It is time to set aside our differences and unite for the greater good of the autism community as a whole.

Our children (and adults) diagnosed with autism need support, protection, advocacy, and empowerment as well as other necessities.

Personally, dare I say, that I actually relate to both sides in my own unique way; the neuro-diveristy and the pro-cure. I don’t think that makes me hypocritical. I am just a concerned mindful mother wanting the best for her child.

The nuero-diversity camp promotes that we accept our differences and honor each person in their unique sense of self. Truthfully, that really is the foundation of my personal advocacy group, Exceptional Beyond Labels. I, also, believe that despite any label (autism, aspergers, pdd-nos, ect) that each person behind the label is just that… A PERSON! They are a person not defined by this label, but rather a person defined by their unique individualization... And that person is phenomenal and capable of anything given the proper tools. Autism is not something to be ashamed of, in fact, I believe it is those on the autism spectrum that will make profound changes in the systems that are no longer working in our world(but, that is a whole different blog entry). I believe that all research and programming and legislation should include parents and adults on the spectrum ... I agree that we cannot determine their future without their input!!

On the flip-side, I find myself praying for a cure and requesting unbiased 3^rd party research. I long for a day that the ‘infantile autism’ label that limits my child is shed like the skin on a snake. I am motivated to prove the diagnosing psychologist wrong when she said to us without a blink of an eye that our young daughter would never have a productive career, meaningful friendships, marriage, a college education or independent living. I have read countless books and surf the net to wee hours of the night to discover what others are doing to help their child diagnosed with autism to 'recover', so that I might be able to pull her further into our world closer to a functional life. I have tried diets, alternative therapies, holistic medicine, traditional therapies, and anything else that was within my arm’s reach. I want, like every parent, to have my child have a bright future full of possibilities.

I don’t do these things to change her core essence, but to remove barriers so that she can have a productive future; to improve her quality of life; to reduce her fundamental frustrations that are demonstrated through a profound expressive and receptive speech delay, an heightened autonomic nervous system response, the sensory and auditory processing complications, a curious eating disorder, awkward socialization skills.... let's not forget that I do this to end the never ending fear of her risk of elopement ending in a catastrophe or to end the nightmares about what will happen to her if her parents were to tragically die or to end the fear that resides in the knowing that if someone were to violate her she would not have the functional words to tell me (and the list goes on) …

I have come to understand that some cases of autism (possibly more aspergers than infantile autism) is genetically based and hereditary while other cases are more environmental. Our geneticist concluded there was no biological foundation for the autism, yet denied environmental possibilities. That doesn't make sense to me. How can biological and environmental factors both be ruled out? This is a hot topic and has caused some to even proclaim hatred towards a certain celebrity. However, I cannot rationalize for one second how the toxins in the vaccines could possibly be safe in the amounts given to the tiny bodies our child inhabit. Yes, I know that the CDC and FDA have cleared them to be safe but common sense tells me otherwise. (I am not going to elaborate on this as there are many resources out there stating the facts… go check them out). I, also, am concerned that no one is talking about maternal vaccine history and its effects on the offspring she bears or the Rho-Gam (Anti-D) vaccine given to pregnant women with negative blood. If the toxins cross the blood brain barrier during critical fetal nuero-development could that not affect the brain and cause autistic-like symptoms?

Now, I do believe that the camp that takes this stance should be less cynical and sarcastic in their presentation … tastefulness goes along way. I wonder if a certain publication ever considers that their point of view would be better accepted by mainstream, the autism community, government, and big-pharm if they added a little more class to their presentation. But, their opponents create face book pages like I Hate Jenny McCarthy. So, what do you do?

This has to stop. We have to have a truce!! We have to say we can understand both perspectives and respect the needs of both parties. We have to stop organizations getting rich off of the challenges our children and adult friends diagnosed with autism face. We have to unit for the common good for all involved regardless of etiology beliefs! We have to unite to promote advocacy, education, safety, insurance inclusion, 3^rd party research, affordable early intervention, awareness of alternative and holistic health modalities, resources on self-esteem building, education advocacy and inclusion, elimination of seclusion and restraint, as well as promote things like education for mainstream professionals like the police, firemen, teachers, store clerks, life guards, and public transit authorities.

We have to put aside our differences for the greater good of our community; a community desperate for answers and desperate for acceptance.

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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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