Splash!! Zoombezibay Autism Style

10 things about our Zoombezibay (water park attached to our local zoo) trip that were notable today!!

1. Sahara can wait in line without prompting or support !! When did this self control and awareness happen?

2. Self advocacy Rocks.. she verbally asked the life guards the rules and corresponded with many of the lifeguards about how she was feeling and what she was doing.

3. Sahara' gross motor skills improved... as demonstrated by her deliberate moves on the rope course.

4. Okay.... Nuerotypcial kids sometimes push my buttons... where are the manners of children today!?! Cutting lines. Staring. Pushing. Yes, My Mama Bear flared a bit.

5. Can a water park be too wet? Holy splashing and spraying and squirting in the new kids area... which tells us that sensory issues are resolved. TY Young Living!!

6. EPIC -- Sahara went down the big water slides in the double raft with me.... HOLY COW!! I have put this off for 3 years bc of communication barriers and core strength issues. She screamed, "We are going to dieeeee!!" The whole way!! When we got to the end she said, "Emily, that was so cool!!" 

7. When you see a child have a meltdown, staring does not help. Nor does reporting the parent to security.... apparently we need more awareness in our community. Bc someone apparently thinks me standing near my child, talking softly, making sure there is no self injurious behavior or danger near by... is questionable behavior. After I explained to the security gal that she was having an autistic meltdown, she smiled and walked away... but the woman who reported me stood there glaring at me.. really!?!?! Because a screaming and crying child is so novel?

8. Said meltdown was precipitated by a mock drowning in the wave pool.... training lifeguards, which freaked her out... writing them a letter to better make the public with impressionable children and concrete thinking children can be removed from that scene!!

9. Thank God for YL Lavender Essential Oil.... used on Emily's bruises she acquired while chasing Sahara during the meltdown. And again used in the car... to which she stopped screaming within 2 minutes of Emily wafting it to the back seat.

10. Finally, I have the patience of a saint.... taking an autie and an aspie who are over tired to the water park.

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Autism Awareness Month 2012, Day 3

Autism Awareness Month, Day 3:

Sometimes I feel guilty for finding blessings in autism when my daughter has to struggle at everything. Sometimes I HATE autism; yet at the same time I have learned to LOVE EVERY aspect of this experience. It is the most dichotomous, yet empowering experience I have ever faced. Through prayer, meditation, a strong marriage and taking my own power back I have learned let go of the anger to embrace the possibilities.... and I thank God daily for trusting me with the two most amazing daughters ever!! There really are blessings in the world of autism, sometimes you just have to still yourself to see them. ♥

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Autism Awareness Month 2012, Day 2

Autism Awareness Month, Day 2...

National Autism Awareness Day:

If you are not intimately touched by autism become aware:

1:88 kids are on the autism spectrum!!

Patience, empathy and acts of kindness go a long way!

You bump into our kids in the store, church, parks, streets, school events...

Remember our kids are just like yours with feelings and stuggles and triumphs the same.

♥

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Autism Awareness, Day 1

Autism Awareness Month Day 1:

Autism does have gifts inter-woven... One unique gift is the deep friendships we make along the way w others on the journey that might otherwise not manifested. I have great friends across the board, but there is just something extra special about my autism friends/family. ♥

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1:88 Autism

1:88 and not an epidemic per the CDC?

That is because they would have a HUGE backlash if they acknowledged anything environmentally was contributing to this enormous spike in the autism diagnosis.

I love my daughter unconditionally ~ quirks and all ~ but the challenges she goes through is not normal... I am not talking nuero-diversity, I am talking the biological complications of autism.

I am not even saying that vaccines caused her autism, she isn't "directly" vaccinated.... but environmental toxins most certainly plays a part and I do have too many friends whose child was typical prior to specific vaccines....

Our government needs to eat crow and acknowledge the role big pharma, industrialized farming, food additives, petroleum tar-based dyes in our foods, approved household chemicals, industrialized birthing practices etc plays not in just autism, but all childhood disorders that are at an all time high... cancer, adhd, diabetes, ms, down syndrome, add, anxiety, ocd, sensory processing disorder, aggression, etc.

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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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What Essential Oils does Alterna-Mom Use?

I have been asked several times lately which essential oils I use with my family. I only trust and use Young Living Essential Oils because I know how they are planted, farmed, harvested, and steam distilled... They are FDA approved for internal consumption and my little ones benefit from diffusing and topical application as well, which is the easiest way to reap the benefits of therapeutic/food grade essential oils.

We have used essential oils to address a wide variety of issues including (but not limited to):

• autism
• anxiety
• nutritional support
• sleep issues
• ring worm
• kidney stones
• poison ivy
• flu and cold
• pink eye
• wound care
• constipation
• academic support
• liver support
• immune enhancement
• melt downs
• and many many more!!!!

If you are wondering how to get started with Young Living Essential Oils. It’s really easy:

• Go to www.youngliving.org/alterna-mom
• Click the “sign up here” tab on the right hand side
• Click “Independent Distributor” to purchase all your Young Living products at the wholesale price
• Click "I Agree" on the distributor application. Note: As a wholesale customer the only part of the agreement that applies to you is you must have a minimum of 50PV / $50 worth of purchases a year, to maintain your wholesale pricing – That’s it! That is ALL you have to do to maintain your wholesale pricing discount.
• Please use my enroller and sponsor number “#1183617” to be a part of my team and a member of the Young Living Success Group (this is a group of people just like you taking charge of their emotional and physical health).
• Choose your “starter kit” …there are 5 to choose from. I personally started with the Everyday Oil kit.
• When your kit arrives I will go though it with you, show you how to use your $40 diffuser coupon and answer all your questions.

____________________________________________________________________________

Distributors/Wholesale Customers enjoy:

• Saving 24 percent off retail prices.
• Buy what you want, when you want.
• No required packs to buy.
• No obligation to sell anything, ever!
• No annual fee
• A $40 off mail-in coupon on a diffuser in every Start Living kit

Optional Savings

If you enjoy saving even more be sure to read about Essential Rewards to learn how you can earn free product!

I look forward to growing our Young Living community…please let me know if you have ANY questions about getting started with Young Living or which essential oils are best for your unique situation.

If you would like a skype consult... let me know that too. :)

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Serendipity and A Random Driveway

Do you believe in serendipity?

I do...

Yesterday I was turning around in a random driveway, and noticed an autism bumper sticker on the tattered car in the driveway. When I looked up, I saw an anxious little face in the bay window....

I have been wondering since if I was supposed to stop and knock on their door... but what do you say, "Um, I know strangers aren't suppose to knock on your door.... and I am probably cause a meltdown with your child, but I was turning around in your driveway and.... I think we are supposed to meet...."

I believe this is how the Universe works, but the mother would have called the cops on me ~ LOL!!!

However, I dully noted the house, maybe I should go back. What do you think? Heck, it was probably one of my autism friends on here.

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Halloween Nights

Halloween is around the corner…. In fact just 10 days away.

It is a super-charged time for me. Firstly, it brings up significant memories for me. Secondly, this Halloween will be the 3^rd year anniversary of our daughter’s formal autism diagnosis… A day our life changed forever!

However, on that Halloween in 2008, I came home and I couldn't breathe…. I was in a stupor for 3 days. Ironically, in hindsight it reminds me of how I felt in the hard plastic masks we couldn’t breathe in as a child; they got unbearably hot as the night went on… which was odd since we lived on the water and the wind chill was certainly cold under the plastic princess dress that didn’t let you move properly and was sure to tear before we made it down even the first street in Jamestown.

No, I didn’t grow up in Virginia…. I don’t know how the community got the nick name other than there was a street close to our Catholic Church called James Street. And the little neighborhood nestled between Lake Erie, the park and the Catholic Church was known as Jamestown; everyone knew everyone back then. All the kids attended the K-12 school and all their parents had gone to school together and their parents and the parents before them.

(This was a nice part of growing up in a small Ohio town.)

On this night, all the cars from the families that lived on the outskirts would roll in and hundreds of kids would pave up and down the street while their parents were nestled warmly in the car waving to the elderly folks on the doorstep. House to house… until the last house of the night… Grandma’s House! That was the best stop, not really because it was Grandma (although this is one of my fondest memories of her)… but she was sure to give us the best treat of the night!!

We would pile back into the car and Mom would remind us not to eat ANY of the candy in our pillow case (our make shift bag) except the one from Grandma; of course because that would be the safest piece of candy in the bag. I am not sure what was in the news those years… I was little, but even though everyone knew everyone, we were not allowed to eat one piece until our parents checked the loot to make sure it was safe to consume… with no pins or tears in the wrapping.

On the way home, Dad would drive around the horn (the quiet peninsula on Lake Erie; another nickname I am not sure the history of) with the window cracked just enough to flick his cigarette ashes as we excitedly pestered our Mom until she said, “Okay, now you can eat your Hershey Bar!” Grandma’s Candy Bar was surely THE best piece of candy in the bag!!

Other memories float in the recess of my mind like the year my Brother made a homemade costume for the Fire Station Costume Contest… a huge pumpkin made out of mesh wire and newspaper with glue water painted bright orange. Not only did he win, but he fell walking down Jamestown and rolled down the street… Hysterical even to an 8 year old!

Or the year when we were much older and my siblings took me to my first Haunted House…. Which was pure terror even for a 16 year old. The ‘werewolf’ (not the warm and sunny kind that Jacob is in New Moon) picked up on my fear and ran with it. He wouldn’t leave me alone as we waited over an hour in line to go through… I was so scared I PICKED MY BROTHER UP and barricaded myself between him and a large tree. Mind you I was a tiny adolescent… could blow away in the wind; Fear and Adrenaline was my strength!! On the way home we laughed so hard we cried.

Halloween was a fun holiday!! As I moved grew older I still came home during my college years, dressed up and went Trick or Treating with my niece in Jamestown…

My husband and I had our first date on Oct. 27, 1988! We were supposed to go to a HauntedHouse, but ended up at

Halloween 4: The Return of Michael Myers.

Every year since, we watch a scary movie in honor of our first date. On our first Halloween Married, we went to a costume party as a Biker and his Bitch... we had a blast when no one recognized my new hubby! We went home the next day to celebrate what unknown to us would be my Father's last birthday. My Dad about flipped out when she saw my fake tatto... he thought it was real!! Of course, I milked the situation as best as I could until I thought he was going to kill me.... not really.

As we became parents ourselves, my love for Halloween continued. I loved seeing my little ones dressed up as little cows and ladybugs!! Of course they never ate the candy; I would take it in to my office and give it to my clients. On my oldest daughter’s fifth Halloween she handmade her costume…. Tinker Bell!!! She picked out the fabric, cut it, hand stitched it… for weeks she worked diligently on it. Taking pride and care in each stitch…

On that Beggar’s Night, we went Trick or Treating with a group of other parents and their kids. They were on a mission to get as much candy as possible, running from house to house. One mother had our whole route planned out to hit the most houses… as if she couldn’t afford to buy her own kid a Twix (said with a little contempt in my voice)! BUT, Emily didn’t go up to half the houses that night!! She danced n twirled like a real Pixie, while telling everyone who would listen about how she had made her own Tinker Bell Costume. She rolled down hills of leaves and was happy being removed from the drama around her.

Every year since, we have hand made our costumes… with a family theme:

Harry Potter, Toy Story, Fairy Tales, Egyptians, Puppies and Dog Catchers, And this year… Ancients!!

ANCEINTS… people or concepts of people that are from our past that still influence us today (Emily’s idea)… Ancestors that are from many many generations before us still bringing us enlightenment! Over the years, Halloween has become as significant to her as to me. I am sure on Nov. 1 she will be asking, “So, what do you want to be next year?”

On the Middle School bus yesterday, the kids were boasting about smashing pumpkins and taking the whole bowl of candy left on porches… my eldest daughter came home expressing how stunned she was. Emily said she couldn’t believe the disrespect and immaturity the kids were bragging about. When she called them on it, they gave her a hard time and asked, “Well, what do you do for fun then on Halloween?”

She, very matter of fact, told them she walked around with her family… They balked at her, but she continued to tell them about our family themes, and how her sister was diagnosed with Autism on Halloween 3 years ago. So for her little sister to design her own costume this year was a big deal; and supporting her sister was more important than the junk they were stealing.

She told me some of the kids got quiet, but the bully just went on with her rhetoric, but she didn’t mind. She said that she understands most families are not as close as we are… and she found that to be sad. She is very insightful… perhaps a true Ancient resides within her!!

This morning as I laid out our material and the intricate plans Emily has sketched for us for the construction of these costumes… I am reminded how Halloween has signified so many moments in my life! It isn’t about the loot and the monsters or the devil as some religious persons believe. It is about clean fun, family and creating memories with our children.

…This year will be no different. We will spend the next 10 days diligently working on our costumes for a night of family fun complete with Trick or Treating, Pumpkin Carving, Hot Homemade Chili waiting to warm us up afterwards…. AND FAMILY MILESTONES!!

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I AM ME... The Autism Discussion with my Daughter

Every year the Ohio State Fair marks a monumental moment for us... the home stretch of summer break. This year was no different... until we arrived there and then the twists and turns of the day lead to an unexpected turning point in our world of autism...

We were greeted by a procession of dozens of motorcycle cops blowing their horns with flashing lights... what was the big deal??

SANTA!

Sahara is obsessed with Santa (and I mean that literally). The past 3 weeks have been riddled with Christmas Carols, crafts and plans about how we now have a fireplace to accommodate The Big Guy entering the house Christmas Eve... never mind you it is the dog days of summer. This has left me wondering why we tell our children this lie.

Now once upon a time I thought this was a magical right of passage.

Today? I see how my older NT daughter is completely upset that I had lied to her all of these years. And although I know we shall get through this, it leaves me wondering how we will address this exaggeration of the truth to our autistic daughter. The not so well thought out excuse, “The spirit of Santa Clause lives in us all as long as we believe,” will certainly not suffice to my concrete thinker.

I have even started saying to her, “What if Mommy is Santa?” And she looks at me with a ‘I don’t understand’ expression and moves on. In fact, these are one of those moments in parenthood that you regret bringing mainstream delusions into the world of autism. I suspect that this will be a very difficult situation to overcome...

Anyways, let’s get back at the State Fair.

Each year we have a previous year’s experience to help measure our progress.... and HUGE MILESTONES were evident.

From being able to ride independently on rides as we stood on the side lines looking on just like the other parents ... to her exclaiming that she wanted to go on the Big Yellow Slide and The Caterpillar (junior roller coaster). What is so amazing about that? She asked for them before she saw them... which means she not only remembered the fair from previous years, but had the words to tell us.

Having more and more words coupled with receptive communication has been our biggest growth this past year (especially the past several months).

Words were sandwiched between every activity... but there we moments that reminded us that autism was still in our midst.

... like the time she refused to stop playing with the squirt guns at the water balloon game... the Carnie yelled, “hey kids if you aren’t going to play, stop touching the guns.” Of course Sahara didn’t understand his words muted over the back ground noises... so I quickly come to her defense, “she has autism and doesn’t understand you”. He huffs away, we move on.

.... or the time she ran across the bridge on an obstacle course and that Carnie yelled at her to stop running and when she didn’t he grabbed her arm and told her to go back and walk the bridge or she wouldn’t be allowed to come back on the rest of the day. I am hot, exhausted and snap, “she has autism". Then he gave me a look like ‘make her listen lady or else’ so I add, ".... I am doing the best I can.”

A few weeks ago I caught myself on numerous occasions saying in reference to her, “She has autism”, as a defense against perceived odd, annoying, or challenging behaviors. I wondered what message that this sent her? I remember thinking that I didn’t want her to use this label as an excuse and I didn’t want her to identify herself solely on this label and so I vowed to shift my language and beliefs. I obviously didn’t do very well with the oath at the Fair.

Each time this ‘defense’ came out of my mouth, I was left with a feeling of regret in my heart. And found my internal dialog was desperately trying to find an alternate way of responding (not reacting) to others frustrations, judgments, and demands on my child who IS EXCEPTIONAL BEYOND THIS LABEL!!

I realized at the fair that this is so much more about me than her... [or so I thought]. My daughter is good at teaching me huge lessons in life... patience, faith, trust, compassion, endurance, etc. This day was no different...

After using the bathroom, she washed her hands. As I looked down I knew that she was going to tear her wrist band for the rides off as soon as I saw it get wet... there was no convincing her to keep it on. She has sensory issues around water... so I knew the wet band was irritating her wrist.

Her dad and sister took off to go ride the big rides while we headed to the other side of the park to see if they would issue a new tag.

Honestly, I didn’t want to shelve out another $22 for a new wrist band and was panicked that they wouldn’t cooperate with my request. We arrived to the tent which was empty all except a middle aged man sitting at a table. He looks up and asks what I need and I blurt out, “My daughter has autism and tore her wrist band off when it got wet, can we get a new one?”

No Resistance.

No questions.

Just an understanding nod of the head.

He has her sit down and he repairs the band and puts it on her ankle over her sock to prevent further skin irritation... pretty sure he has done this before or perhaps he has a special child in his own life.

I am taken by surprise when Sahara starts to sob as we are walking out of the tent. I get down on my knees and ask why she is upset. Her answer punches me in the heart... “AUTISM”... I embrace her and we cry for a moment together... “I SAD!!”

“Does autism make you sad?”

A very clear articulate, “YES!”

“Do you want me to stop saying you have autism?”

She looks me in the eyes and says an even more articulate and clear, “YES!!”

I am floored... I don’t know if I should laugh or cry. On one hand, I am relieved she knows about the autism. Yet on the other, it is my own damn sense of insecurity and my Mama Bear reactions that most likely resulted in her awareness.... and she doesn’t like it... in fact, she said it makes her sad.

I always wondered when we would have “the autism discussion”... I never pictured it happening organically at the Ohio State Fair. But there it is.... “Yes, Sahara, you have autism... but no it does not define you. You are, can do and will become anything you so choose.”

So there it is... My 7 year old quasi verbal child just reminded me why I educate others that our kids are exceptional beyond labels... I have gone introspective and decided it really isn’t anyone’s business why my child has quirks... and really that IS my issue not hers. In her own way, she made it quite clear, that she is not defined by autism... she is Sahara Grace. And so, I move forward into our new chapter of our newly defined world within autism.

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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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Attention Educators: Stop Bullshitting Me (Part 1)

I think educators think we [parents] are stupid.

However, I would like to remind them all [teachers, principles, aides and administrators] that as a professional counselor it is my job to see through people’s bullshit. And lately I have been wading in a lot of that.

I have tried to be nice, like Peter Wright suggests... but I have had my fill of social etiquette this year.

(For those of you who don't know: The district is moving our autistic daughter from her current building to the home building based on residency because of 'district growth challenges' or so they say... and we have let them know we do not approve. She is not only flourishing but has built friendships with the kids in her grade level.)

Anyways, the principle out right lied at the IEP meeting stating that the 'administrative team' reviewed her records and the decision was based on her excessive tardiness... "REALLY? because I put her on the bus on time every day this year; she better have gotten to school ON TIME". Of course her school record confirm that she was NEVER late to school. So we were told about 3 more songs and dances on why she couldn’t stay in the building where she was not only established, but flourishing!

What is interesting, we know there are other children in this same building who are not in their home building... and yet they did not get the same letter that we were told was 'standard' and sent to all students not in their appropriate building based on residency.

But the thing that bothered me the most... was the teacher I lovED and respectED didn’t correct the principle in her tardiness accusations... she sat there wide eyed and didn’t say a word... until the principle left the room. THEN she whispered, “She has never been tardy!!” Why didn’t you speak up when the principle was ‘arguing’ with me about this? I thought you were supposed to be Sahara’s advocate. (3 professionals you work with told me you have 'pull' with the district and could advocate for her to stay... so why aren't you??)

Then the therapist and teacher refused to add accommodations into the IEP that support these statements.... “she reads better with the lights off” (sensory issues) AND “she does better in OT with fine motor activities (like writing) when she does Brain Gym first”.

When I tell you I am unhappy about this not being in the IEP I get the response, “they will figure it out.” That Is not only an unprofessional statement, but unacceptable.

My poker face went out the window weeks ago, so you add, “well, Sahara just might tell them herself.”

Seriously?!?!

The child still often speaks in jargon and you are going to expect that level of verbal communication from her? Yet alone that is not the child's responsibility!!

“I thought you said you were going to relay that to the new team yourself?”

"Oh yeah I will” [big cheesy smile]... pardon me I think you are bullshitting me again!!!

This makes me wonder how much more bullshit you dealt out this year. Unfortunately, I will never know since my daughter has gross communication and language delays. But I wonder about the rides home when she said, “Sad... school... sad” as she whimpered. Or the day she came home saying, “Arm hurt....” And when I asked about it ‘nothing’ out of the ordinary was reported.

If you cannot speak your truth in front of the principle or directly to me when confronted.... I wonder how truthful you have been all year. So maybe, just maybe... once again, God is protecting Sahara by having her forced to move on from this building.

I know I have been very verbal about this on facebook lately... that helps me process. And I knew I would eventually get to the silver lining... I think I got there today.

I really was hoping for different outcomes... but time to move on. So, we are agreeing (as if we had a choice) to put her in the home building under the contingency that if we note ANY regression, we are reconvening the IEP team! And I WILL have my head so far up the new team's butt... they will be crossing every T and dotting every I for me next year. I will not let my guard down nor get all buddy-buddy with the new team. They are being hired by me to do a job... and I will make sure they are doing it.

So we end the school year bitter sweet.... you just heard the bitter.

The sweet is Sahara has made HUGE HUGE HUGE progress this year. She has bloomed socially and academically (reading, writing and doing math!!). If I see any hint of regression in the new setting I am no longer afraid to go to bat for this kid!! And again as an educated mother who has worked in the education and counseling fields... I am not hesitant on pulling her and home schooling. She deserves that and much more!

((Stay tuned for part 2 on Stop Bullshitting Me... Part 2 on Emily's adventure!))

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IEP Season

I have come to understand there are 2 different cultures of moms in the month of May... the moms counting down til summer break just so they can count down til school starts AND the moms who are in the midst of IEP-season. No judgement.... just keenly aware of the differences right now.

I used to be in the first culture (minus the countdown for school starting – I always dreaded seeing that big yellow bus pulling up to take my children away.) But once apon a time, May was the time of year to make summer plans and get all excited about the unlimited fun possibilities masked as summer vacation... I miss the simplicity of that lifestyle.

But that is in the past... now, I dread May (not really I love May, but I do dread IEP season). The awkward red tape that is surrounding our special children's education is very irritating to me... let’s face it the IEP really is a bullshit document. You never get what you think your child needs and the services never seem to be quite enough. And the teachers always say they are helpless while the people in suits sitting behind desks in a cozy building making 6 digits are really calling the shots.

I often wonder if they took pay-cuts, could our children get the services they deserve? This isn't a matter of whether or not a child will go to prom (and I guess sometimes it is), but their education really is about their future.... their life and potential. I suppose, as an administrator, it is easy to clock in, do your job and clock out. But for us parents it is a 24/7 lifetime commitment.

A commitment to a child... not a number, a name or a budget... but the living, breathing human being who has unlimited possibilities if given the proper support and tools. It shouldn't have to be this hard to secure our children a free appropriate education (or therapy, but that is another blog entry).

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