Pica and Autism: One Family's Solution!

Pica ~ An eating disorder characterized by the consumption of non-food items for more than a month.

PICA AND AUTISM, our history...

I used to ask myself, "How can she eat TOILET PAPER, CARDBOARD, FOIL, PAINT CHIPS (and more) and not eat the meals I carefully and lovingly prepare for her????

No one had an answer to this question..... some offered judgmental expressions; as if my mothering her wasn't up to snuff. And yet the contempt in others' voices was present, as they questioned how she got the object or substance in her mouth in the first place.

I ignored them of course... Any sensible person would know better than to compound a mother's desperation as She waded forward in a world of special needs with no guide book!!

I think aside fleeing....... PICA was the most undeniably frustrating and fear inducing behavior we have faced in our Autism Journey! For years, we have prayed for answers. In fact, I remember in toddler-hood commenting how easy we had it with our older daughter, who never put ANYTHING in her mouth, but what I didn't know was that what we were seeing was the early signs of pica .... a disorder sometimes, maybe often, coupled with autism!

There was Constant 24 hour supervision because of the fleeing and pica, but even then... you couldn't keep your eyes on her every single moment of the day.

(I have learned to forgive myself; I am only human after-all!)

Her tears... My tears... Pica, without discrimination, punched wholes in my heart every time I had to pry her mouth open and swoop my finger with the high chance of being bitten (hard!!) to extract the checker,marble, eraser, stone, paint, rock!!

It would literally take nano-seconds for her to get the desired substance within her mouth. Which is what happened when the night we ended up in the ER under the suspicion that she had swallowed Connect Four Checker. Yes, she was sitting right in front of me on the bed.... read that story here.

BUT, at that time she was non-verbal.... so we didn't know if she really swallowed it or not.... and to be safer than sorry, we went to the ER. Which is when I learned checkers do not show up on x-rays... therefore that night I added to my resume, "Poop Sifter!".

AS IF IT COULDN'T GET WORSE

5 months ago.... new risks emerged; swallowing a Polly Pocket dress WHOLE at school and attempting to eat the baggie in her lunch box. Even then, the only recommendation from the Doctor's Nurse was to watch her poop....... we never did find the dress!! But the level of supervision intensified.

Just a few weeks later, we discovered she was eating the eraser and metal off of pencils ......... she was prying them off with her teeth, chewing it up in to tiny tiny pieces and swallowing them!!

Then the dentist found a scar on her front upper gum; assumed to be a cut from the metal.

And she was cleaver... but not because she was trying to be deviant, But because when your body craves something like METAL... you will do anything to consume whatever will give you the biological relief your body so desperately needs.

This had become a medical issue!!!

We knew some people attributed pica to mineral deficiencies..... specifically zinc. But others suggested iron..... and her ashened complexion was consistent with anemia. So we decided to take her to a new doctor, one that looked at the biological aspects of Autism......

THE BIG DECISION

...... but just as I feared this medical doctor ordered 42 tests!!!!!

Mind you, in the state of Ohio insurance companies are not required to pay for anything coded as Autism. ( I know this because despite having Speech Therapy benefits on our policy, they send us a denial based on the Autism diagnosis every month!!)

So, I crunched the numbers. I calculated what it would cost us... THOUSANDS!

No, not figuratively, but very literally.

So we were left feeling helpless, confused and mostly angry about what to do.....

Choice 1: Bite the bullet and get the tests and budget in monthly payments to pay this off ...... for the next... well, forever!! But, even if we did that.... then we couldn't afford any of the supplements that the doctor would suggest to address the Pica, because of the exorbitant costs of the tests. Yet alone, the nagging thought in the back of my head... even if they prescribe supplements, HOW would we get them in her?

Then there was...

Choice 2: Take a huge chance and put her on a Whole Food Nutrition Infused Supplement that we had been considering for the past16 months..... and basically cross our fingers and hope for the best. Yes, A Shot In The Dark!!

NINGXIA RED, A SOLUTION?

Just 1 ounce is like drinking...

• 4 lbs of Carrots (2 qts of carrot juice)
• 8 Oranges (1 pint of orange juice)
• 2 lbs. of Raw Beets (2 cups of beet juice)
• 3 cups of Blueberries
• 2 cups of Raspberries

What it really has in it...

• Ningxia Wolfberry Puree
• Blueberry Juice
• Pomegranate Juice
• Raspberry Juice
• Lemon and Orange Essential Oils
• Agave Nectar
• 18 Amino Acides
• 21 Trace Minerals
• 6 Essential Fatty Acids
• Vitamin B1, B2, B6, E
• Antioxdants
• Phytonutrients

Ningxia Wolfberry Nutrient Summary...

• 67 times the Thiamin (vitamin B1) of Brown Rice
• 2 times the Niacin (Vitamin B3) of Baker's Yeast
• 3 times the Vitamin C of raw oranges
• 2 times the Beta Carotene of Raw Spinach

Ningxia Wolfberry Minerals...

• Calcium
• Chromium
• Magnesium
• Potassium
• Copper
• Zinc
• Iron

WE WENT WITH DOOR #2

I Tried to get her to drink it plain.... with no success. However, her older sister LOVED it that way so much, we bought the single serving packets to put in HER lunch box.

However, we had to get creative... well, not too creative. We started by adding a tiny bit, like 1/4 ounce to her Organic Strawberry Smoothies (main part of her diet)... and she didn't detect it. We have since slowly increased the amount to 1 ounce per smoothie. This timeline demonstrates her consuming 1 - 3 ounces per day.

2 MONTH TIMELINE:

Earlier in December we put both kids on Ningxia Red for a week... we saw a 90% reduction in pica episodes (Note: She had been consuming various non-food items numerous times a day... including METAL and PLASTIC!!) But, we ran out and didn't buy more... I was still unsure whether or not I want to do this or the medical tests and labs. BUT THE PICA CAME BACK 100% AND I DECIDED THEN TO BUY MORE!

Here are my FaceBook Ningxia Red Related Statuses over the next several weeks...

12/30 Pica doesn't vacation .... even At grandma's! We need to go do that lab work ... so we can start the nutritional support!

1/08 Reintroduced Ningxia Red..... Whole Food Nutritional Antioxident Drink...... No pica this weekend and she ate Chicken, broccoli and noodles for dinner! This happened the first time we introduced it, so we Decided to hold off on labs since this is our desired outcome anyways!

1/10 Last night Sahara ate 25 shrimp, 3 apples, 5 cookies and 3 glasses of water.... Every time we introduce Ningxia Red she becomes this eating power house!! No PICA episodes since Saturday! ....And on a side note, Emily warms my heart!!

1/15 Sahara has been consistently on Ningxia Red for a week; 1-2 ounces a day..... A couple things I have noticed in just a week! .... Only 1 PICA incident all week, but not metal... In fact it was the eraser and she left the metal alone on the pencil and brought it to me (HUGE), her appetite has increased, she is sleeping better (laying down immediately, not Stimming by running in circles in the room and) the best for last..... Her color in her face is this beautiful blush pink (her OT noted 2 weeks ago she looked anemic in her face coloring.... I said I knew that!) Not only have I noticed this, but Jim and Emily noted it as well..... I am very optimistic in our choice to use the funds on this instead of labs... Stay tuned :)

1/17 Spent all morning researching Ningxia Red (YL's nutrition infused drink) and the Wolf-Berry...... prompted by the immediate results we are seeing w the girls. Even w YL products I have to do my research. #impressed

1/18 The BBC News reported that wolfberries may provide more dietary iron than steak. The Chinese Wolfberry has 9mg iron per 100 Grams.... Seen as one of the best plant sources of iron!! I KNEW HER COMPLEXION WAS BETTER FOR A REASON!!! YAHOOO.... #Ningxia Red

1/20 On a positive note .... Ningxia Red update... she is now refusing Wendy French Fries... She has eaten them 5 days a week for 2 years! (I know, I know, but my excuse was poison her or starve her) 1-2 ounces a day of infused nutrition!!!! Can make a huge difference! She wants NR instead!! Better nutrition, Slightly Pink cheeks, no pica, falling sleep better..... Why did I wait so long?

1/23 Day 16..... Sahara's complexion is 'normal' tonight!!! No pica!! I am going to schedule a gathering in Feb about this amazing drink!!!

1/26 I think the Ningxia Red is making her crave REAL food.... she hasn't touched a French Fry in over a week and now she is refusing bacon. #happydance

1/27‎ "Both the mineral profile and mineral balance of the Ningxia wolf-berry is without equal in the plant kingdom, with magnesium to calcium ratios at almost 1:1, zinc to copper ratios at 2:1 and potassium to magnesium rations at 8:1."

2/03 ‎4 weeks on Ningxia Red.... 1 PICA incident at home (day 3, but she said the metal tasted gross!), NO PICA at school. I believe it is Safe to say this is working! Thank God!!

2/12 PICA update..... I can't believe it has been 5 weeks!!!!! I don't want to be premature, but I think we have resolved this issue. I still shudder thinking about how she was eating plastic and metal!! That was the worse..... fearing her choking or having internal injuries. THANK YOU Ningxia Red.... I am still in disbelief that this worked...... definitely a gift from our Creator!! *grateful tears*

2/12 PICA update: We ran out of Ningxia Red!!!! Sahara hasn't had any for 56 hours... Yes, I counted! She has lost the color she was getting in her complexion... So ashen (anemic looking!) and she was mouthing rocks again, first time in 5 weeks!! And she is craving junk food again.... THAT FAST! CONCLUSION: the NR is working for the PICA, anemia and appetite! And we will NOT run out again!

2/15 Dear PICA, I loathe you!! And be warned... the Ningxia Red (nutrition infused puree) will be here Friday and I will NEVER EVER run out again!!!! And therefore youwill be eradicated!! My daughter is off limits to you from that point on!!!Got it?? Signed, Me

2/17 FED EX IS HERE!! Woot Woot!!

2/19 PICA UPDATE: Back on Ningxia Red for 48 hrs. 1 confirmed incident of sucking on plastic. Her ashened color is gone and is an eating machine again! I need to write up this time line ... It is amazing to see first hand.

2/25 Morning Gratitude: 1 week back on Ningxia Red and the pica is gone againand her cheeks were pink last night..... This purée is a miracle! I thank God for providing us with everything we need, we just have to be willing to listen and take action.

2/27 Went through my posts over the last 2 months and pulled all of my updates on PICA and NINGXIA RED for my blog post.... SO GLAD I post about our milestones and struggles... My daughter's quality of life is better bc of Young Living and ningxia red.

CONCLUSION

I am not saying Ningxia Red treated or cured my daughter's Pica or other issues stemming from the Autism, but I will say, WE WILL ALWAYS HAVE NINGXIA RED IN OUR HOME AND I WILL MAKE SURE WE NEVER RUN OUT AGAIN!!!

I am convinced the Ningxia Red supported her body and gave her the nutrition she needed to deal with this very scary situation: PICA!! But, other observations are evident too: Decrease in Anxiety and Stimming, Improved Sleep, Immune System Enhancement.... and more. The results our entire family has had in the past 2 months has been staggering!!!

I don't know of anyone else who has used Ningxia Red with a child (or adult) with Pica; however I decided to do this when I learned about the zinc and iron content in the Wolfberry. In retrospect, I wish I had done the tests..... then put her on this product to see what really was happening at a phisiological. However, I am not willing to stop to see the regression just for statistics. Her daily progress and the halt of the consumption of metal, plastic, paper, etc is proof enough to me that this worked for us.

Do your own research... here are some places to start:

Ningxia Red: Ancient History part 1

Product Description and Studies

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Dear Autistic Friends... My Gratitude, Frustrations and Empowerment

Dear Adult Autistic Friends,

Thank you for debunking myths about being an autistic adult for me. Sahara (my 7 year old daughter) has gone from catatonic to achieving daily milestones... and I feel hearing your stories and befriending you has helped me set the bar high for this amazing child (when professionals said to institutionalize her).

Traditional therapy and educators didn't instill compassion and empathy in her. Nor did it teach her to strive for self actualization... which she WILL achieve some day. I have done that (along with father and sister.) Together we have worked day and night to see that she have the highest quality of life. Daily we meditate and focus on what our goals are... not the fears and struggles. If we got caught up in all of the woes than we would have little progress.

I have found gifts wrapped around this journey... and each of you have helped me achieve this. Yes, I know there are struggles... anyone who has read this blog knows I understand the raw side of autism. But, what I don't understand is how you set limits on what your autistic child will do 20 years from now. How do I know she won't get married? Or have a fulfilling career? Or travel on speaking engagements about her autism journey?

I don't... like I told the psych, "We don't have a crystal ball".

But, ironically... the extreme opposite is that I also get frustrated when outsiders talk about the gifts of autism... cause they do not know that raw emotional pain we go through and how much harder our kids have to work at seemingly simple things. I get offended by their assumption that they know more about this journey than us.

They do not see how hard I have worked to pull this child out of catatonia... when told we couldn't. How my persistence and attachment parenting taught her compassion, emotion and empathy... when told she couldn't. How we had to scrape pennies to get natural remedies... when they told us they wouldn't work.

I have worked hard at giving her the best chance at a life she so chooses... because she deserves that and so much more. And she has worked even harder to meet all of our demands on her young being.

Yes, like I always say, we have come a long way... but we have even longer way to go. But today I am optimistic that she will be a productive citizen and have all the opportunities her NT sister has. I know she will always see life through different colored glasses, but she is exceptional beyond the label and limitations of autism... as are all of you.

Thank You for your compassion, understanding, encouragement and friendship... it has helped empower me as a mother of a young girl on the spectrum.

~ Alterna-Mom

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Morning Gratitude

Morning Gratitude: Thank You God for trusting me enough to be the mother of these special kids!! Last night I was listening to Sahara talk, yes talk, to Emily and her BFF and I said to Jim... THIS is the same child that the psychologist wanted us to institutionalize... even through all the advocating and tears, I am so humbled to walk this path with them. THEY give our life deeper meaning and for that I am forever grateful!! ♥

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Breakfast Success

Am I an overachieving mother?

Perhaps!

This morning for breakfast I made...

Sahara ~ Bacon, Fresh Strawberries and a Smoothie. After I delivered it to her (in bed) she said in a sweet 'I love you' sort of voice, "Downstairs, Mom." I suppose she was happy with her selection and just wanted to happily munch while watching Angelina the Ballerina by herself.

Emily ~ Cream Cheese and Homemade Berry Jam Stuffed French Toast, Bacon, Fresh Strawberries and OJ. She, too, is feeling the need to be by herself this morning and is watching Star Gate Atlantis in her own room. (I get sad sometimes about her new desire about having her own space, but that is part of the growing pains of motherhood.)

Mom ~ A Mushroom, Spinach and Cheese Omelet, a Banana and Hot Cup of Coffee. I am basking in the silence of content children in my midst with the fresh breeze coming through the open window. But, I know this moment won't last long... as is it almost time for the noon crunch of getting ready for the bus, then 5th grade home school goes into full swing. Today we move onto fractions and I am actually secretly looking forward to finding out how Junie B Jones is going to get out of the pickle she is in. Or maybe I just like hearing my daughter read...

Dad ~ Well, truthfully, I don't know what he had for breakfast. I intended on waking up early to make him something, but he was already off to work when I rolled out of bed at 7:15. I hope he is having a peaceful day in the pod.

I feel satisfied in this moment. I hope you all enjoyed your morning too...

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Book Review: The Power of Intention

The Power of Intention – Gift Edition

Learning to Co-create Your World Your Way

By Dr. Wayne W. Dyer

I was first introduced to Dr. Wayne Dyer many years ago through his public television broadcast of The Power of Intention. I found Dr. Dyer to be articulate, heart centered, peaceful and charming as he thoughtfully spoke his words, “Intention is a force in the universe, and everything and everyone is connected to this invisible force.”

My life was instantly transformed as I integrated The Power of Intention into my own personal life. Specifically, The Seven Faces of Intention impacted my daily actions and thoughts, fostering great change within me— Creativity, Kindness, Love, Beauty, Expansiveness, Abundance and Receptivity. These are powerful concepts that can create profound shifts for anyone when mindfully implemented.

As I re-read the 2010 gift edition of this unparalleled work, those seven concepts elicited a feeling of peace and harmony within the core of my being. I became aware of how much over the years I unconsciously integrated these Faces Of Intention into my own personal daily practices. In particular, I began to distinguish how much Dr. Dyer’s work had influenced my style of mothering…. I keenly became aware of the way in which I intended opportunities, growth, expansion and health within my young children’s lives and how I have taught them core life values through The Power of Intention.

As I continue to nurture these concepts and values with my young children, I understand that they are receiving an extraordinary gift and a means to manifest and cultivate a purposeful life; unlocking a power within them to have control over their unknown futures. I enthusiastically recognize that The Source of creation is alive and expressing itself through these dynamic children, not just mine… but through all children.

I believe the most profound outcome I have experienced with The Power of Intention is in the realm of my perception of what it means to be a special needs mother. When my youngest daughter was diagnosed with infantile autism at age 4 ½ we had a difficult choice... We could either blindly accept the diagnosing psychologist’s perspective of our daughter having a future full of great difficulty OR create a life of unlimited potential and opportunity for her.

At the time of the diagnosis, my husband and I were told that our little girl would never to go college, work or live independently; that she would have immense limitations put on her level of socialization; and that her life would include no option for marriage nor children of her own. As if that wasn’t bad enough, we were told to prepare for a long complicated road ahead of us and to start making plans for a future that was certain to include group homes and a life time of non-verbal communication.

Alone and full of raw emotion, I cried for days about her uncertain future. Then on the third morning, during a meditation I had an epiphany… My daughter was exceptional beyond any label or prognosis forced upon her. This meant I was about to relinquish the perspective of the psychologist AND set into motion my own intentions about the magnificent fulfilling life she inherently deserved.

I immediately began meditating on the things I intended for my daughter… to find her way out of catatonia, to develop verbal communication, to long for touch, to socialize, to play with her older sister, to enter mainstream public education, etc… I began to see her doing these things in my meditations, I focused on the feelings of elation when I witnessed her tiny milestones, and I began to treat her as if she was exceptional beyond the label of autism… a perfect creation through God.

I expected miracles…. And we got them!

The invitation to review The Power of Intention presented itself at the perfect time in our lives. It has served as a gentle reminder of how powerful we all are and how all of our possibilities already reside within us. It has jogged my memory that there are no physical limitations. It has evoked gratitude about a time that I was rendered helpless… and how The Power of Intention turned our lives around in order to discover our daughter being an absolute expression of life!

Dr. Dyer has offered us effective tools to use along our personal journey; tools that have empowered us to not aim at curing our daughter of autism, but to soften the challenges that she experiences so that she may have a fantastic life of her choosing. Our shift in thought has opened the door to infinite opportunities for both of our children and selves.

The Power of Intention, Learning to Co-create Your World Your Way is a perfect read for not only parents of special children, but for anyone seeking change in their lives. Dr. Dyer offers specific tasks and steps to take to unleash the power within you to create that which you desire. Keep in mind, this isn’t a how to recipe style book, rather it is a unique piece of literature that guides you to look at life differently and to open yourself to take an active role in what you kind of life you have.

The Power of Intention is saturated with facts about this energy behind our thoughts and actions. In particular, the summarization of the 29 year research of Dr. David Hawkins is instrumental in the realization that this unseen vibrational force is the frequency that impacts and gives life to everything… including our thoughts, actions, and…. intentions.

Dr. Dyer does more than present these facts and ideas to us, he paints a unique picture through stories and quotes from poets, philosophers and modern day teachers. This collection of words illustrates to us the power of our thought, words and intent; that we can and do have the power within us that can create that which we desire. Dr. Dryer helps us realize that we can have an active role in what takes place in our lives.

Uniquely designed, each page brings the sensation of The Source alive through brilliant bursts of colors and inspirational art. This stunningly beautiful version of Dr. Dyer’s work serves as an excellent addition to your own personal collection or as a thoughtful gift to a loved one.

“Dr. Wayne W. Dyer is an internationally renowned author and speaker in the field of self-development. He is the author of more than 30 books, has created numerous audio programs and videos, and has appeared on thousands of television and radio shows. www.DrWayneDyer.com”

Hay House

Amazon

Barnes & Nobel

Chapters Indigo (Canada)

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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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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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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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Do you Support Females on the Autism Spectrum? I DO!!

Every morning for the past 11 days I have been reminding my online friends to vote for the Pepsi refresh Project. Specifically, I have asked them to support The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) which will host workshops across the USA.

Why is that so important to me?

…Simply, because I have a six year old daughter on the autism spectrum. Really I think that is enough of a reason, don’t you?

Before autism was intimately in my life, I had a fairy tale version of what my life would look like in my head. Yeah, I believe there may have even been a white picket fence in that dream. Silly Me!

When I started noticing (as early as 5 months of age) that my daughter wasn’t developing typically I went through the whole range of emotions… denial, anger, blame – you name it, it was there. Eventually after oceans of tears, I was able to move into a place of acceptance and even gratitude.

Autism HAS blessed my life with friends, opportunities and self growth that would have other wised failed to exist. But, that is my life… it is full of optimism. But, then I hesitate and think about my daughter's future… what will that look like? Will she dream of white picket fences?

Hold the breaks Mom… she is only six!!

Yes, I know, but I don’t think any differently about her life than I do about her neuro-typical sister’s. And with her sister in the middle of the tween-age years I am filled with more questions than answers:

Self esteem ~ Boys ~ Hygiene ~ Dating ~ Peer Pressure ~ Accountability ~ Respect for Self and Others ~ Hormones ~ Friends ~ Academics ~ Body Image ~ Sibling Rivalry ~ Drugs & Alcohol ~ Safe Sex ~ Female Empowerment ~ Communication

And as I am faced with these new issues with her sister, I cannot help but to wonder how I will address this with her. These issues are huge, but couple them with the challenges of autism...

Sensory Processing Issues ~ Communication Barriers ~ Environmental and Dietary Sensitivities ~ Discrimination ~ Physical Limitations ~ Emotional Imbalances ~ Vulnerabilities ~ Stemming ~ Pictorial Thinking ~ Facial Cue Integration ~ Socialization Challenges ~ Cognitive Delays

... and it can be overwhelming. How do I educate her? How do I promote safety? How will she develop self esteem and confidence?

Today she seems to have no awareness of most of these things… she lives for the moment, but that doesn’t mean I don’t prepare myself and become proactive in the female issues that she will eventually face.

I can even let my mind wander about her adult future and what that will look like and what challenges she may or may not endure … And I wonder how does being a female autistic impact these issues for her? How will she get the support she needs to be successful in whatever SHE chooses to do with her life? How will she become an empowered woman when she faces obvious challenges? How will she access the resources she needs for life skills?

College ~ Independent Living ~ Career ~ Marriage ~ Family ~ Childbirth ~ Motherhood ~ Abuse ~ Sexuality ~ Relationships ~ Rape ~ Civil Rights ~ Finances

Raising a daughter has its challenges… add autism to it and it becomes even more challenging.

I am perfectly capable of rising to this challenge… but that doesn’t mean I don’t reach out for supports and education. To me that is what the FAIM project is doing. My daughter does have some empowered Autistic Women on her side, advocating for her and it is through their experience that I embrace hope and yes even excitement about her future.

AWN through their FAIM project will visit 5 US cities to provide “effective supports to autistic females of all ages through sense of community, advocacy, and resources.” This is something our community needs… by community I mean the Female Autistic Community. As a mother to a female child on the autism spectrum, I believe that is my community too. And in my corner of the world we respect, support and encourage members of our community. So... having said that, I am asking all of my friends to support AWN with there vision.

Here is a list of things that this grant will provide (taken directly from the Pepsi Refresh Project Page)…

The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources.

· AWN's Project FAIM (Female Autistic Insight Mentoring) workshops will be the 1st of its kind.

· We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications. Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.)

· The participants will meet renowned autistic females whereby gaining valuable insight.

· We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.

I believe that this grant will start a ripple effect that is needed among the female autistic population. So

, I invite you to vote for The Autism Women’s Network to win a $50,000 grant to fund AWN’S PROJECT FAIM (Female Autistic Insight Mentoring) daily until the end of this month, August 31, 2010.

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