Respite For Ohio Autism Moms

We are Ohio Autism Moms.... we are motivated to make the lives of our children better. We live our lives around autism 24/7 for the safety, well-being, education and development of our kids. We tirelessly advocate for services, education, 

sensitivity, understanding and equality. (Google Autism to learn more.)

We realize that this journey is taxing emotionally, physically, spiritually financially, and socially on us and our families!! The important part is that we recognize this and are doing something about it.

We recognize that in order to better care for our children, that is imperative that we care for ourselves too. This event is our second annual respite weekend. Last year we met at a spa for... pedicures, manicures, haircuts, massages and pampering. We came out glowing!!! We then moved on to the hotel where we laughed and cried the whole evening. We later had dinner, hot tubing, wine and conversations that only other mother's with children on the spectrum could understand. We talked about our fears, frustrations, hopes, aspirations, dreams...... and ourselves. We we came home feeling empowered!!

This year we have expanded it to 48 hours!! Please help lessen the financial burden of this respite event. Our goal is to sponsor 8 moms. And if we raise enough.... to get our husbands some pizza money for them and the kids. (LOL!!) With their support we can get the essential respite we need to come back better mothers and wives.

Our event will take place in March 2013!

Any donation will help... thank you!!"

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Girls on the Autism Spectrum: Gender Differences

Halloween will be 4 years since our youngest daughter was diagnosed with infantile autism. 4 years!! It seems like we have lived an entire lifetime since. There are moments I still get angry about getting dealt the unexpected life and there are times I am completely at peace with it. 

I mean, the 'white-picket-fenced-happily-ever-after' really doesn't exist anyways, does it? (But no one ever prepares you for that!!)

I get fired up when I tell our story and how it took us 4 years to get Sahara diagnosed; she was non-verbal and catatonic at the time... and we noticed symptoms at 5 months!! Sure we had some denial, but we also kept asking professionals what was wrong! A mother just knows!! Why didn't 'they' listen to my concerns? I often note that we were told many times, “Autism is a boys disorder... it can't be that.”

I am here today to say... AUTISM AFFECTS GIRLS too!!

As we mucked forward in her treatment and advocacy, we started to note markers in our older daughter as well. But she was fully verbal, quirky at times, but nonetheless, definitely not autistic, right? In fact, had I not been engrossed in the world of autism, the quirkiness and challenges would have likely fallen off the radar as well.

We have been asking educators to help us figure out what was going on with Emily too... for years she has struggled academically, socially, and emotionally. I often associated it with the effects of being a sibling to a child w infantile autism. Life hasn't always been easy.

But 2 weeks ago the diagnosis came. I expected it.. yes, was even prepared this time. Sahara's diagnosis hit me like a ton of bricks!! I was crushed for days... maybe weeks... I can't really remember. Back then I was exhausted and the verge of a break down of my own... that is, until I decided I could wallow in self-pity or pull up my big girl pants and change the gloomy prognosis by getting her skills and supports to keep her out of an institution.

Institutionalization? Yes, the diagnosing psychologist told us to go home and put our affairs in order to have her institutionalized... We fired her! In hindsight, I am sure it was a power play to try to scare us into utilizing their program, but that only inspired me more to prove this system wrong... and to do it my way. A gamble? Perhaps... but it was better than the alternative. 

When we saw the word ASPERGERS written on the psych report for our oldest daughter... I was not completely crushed like I had been four year prior. OK, maybe a little, but not nearly to the degree I was with the catatonic infantile autism label.

I knew... and somehow the last 4 years have definitely prepared me to the concrete realization I have two kids, not one, on the spectrum... opposite sides, but regardless... here we are.

Aspergers! It does Answer a lot of questions for us. VALIDATION!!

SO I found myself, again, asking…

WHY DID IT TAKE 13 YEARS TO GET THIS DIAGNOSIS??

I started to think, would it have taken this long for either of my children to get a diagnosis had they been boys? 1:88 children are diagnosed with Autism today... 1:54 boys. I have said all along that there are definitive gender differences in girls vs. boys..  across the spectrum.

With a girl on the aspergers side of the spectrum... it looks different than with a boy. The girls get focused (aka obsessed) with gender appropriate toys... so a sweet little girl lining up her stuffed animals all over the front room is socially acceptable and this activity can be mis-interpreted as a tea party. OR the appearing to be a shy little girl hiding under her mothers shirt or behind a chair is somehow expected.. and by the way, isn't that adorable?  Or somehow that quirky little girl sporting her pony tails and dress becomes just so cute, feisty, or spirited.

Then around the 3rd or 4th grade... when the academicpiece starts to fall apart, it is easy to brush it off as she is just becoming 'boy crazy' (Yes, an intervention specialist told us that once! I was so angry... because my child was not interested in 'boys' like the other girls... another huge red flag.)

Or she just isn't trying hard enough... you don't discipline her enough.... you let the tail wag the dog.... she is so stubborn.... etc etc etc

Then when the asperger adolescent hits puberty... hormones surge. The hormones coupled with the new demands on an adolescent girl with social expectations changing rapidly.. gets shrugged off as anxiousness.... when in fact, they don't know how to navigate the social constructs and inside are drowning. They are excellent observers and imitators... but If you watch closely you can see them 'playing the part' on the edge of the social circle.

WE MUST START LOOKING AT MARKERS FOR AUTISM, ESPECIALLY ASPERGERS, DIFFERENTLY WITH FEMALES THAN MALES.

2 years ago we had Emily evaluated by another psychologist and she said, “I would have given her the asperger diagnosis, but she scored too high in self care.” Are you freaking kiddin' me?? We lost 2 years of intervention, because they look at the diagnostic tools established based on male autism attributes.

Just because females attend to their physical appearance and space, they get ruled out? No wonder there are more boys formally on the spectrum than girls.

So, here I am... at another epic crossroad in my complex life... I can choose to loathe in self-pity and blame, or take action to give my girls the support and skills they need to navigate life.

I choose empowerment.

And so, the unexpected life continues w a new chapter, this time with the realization I not only have 2 kiddos on the autism spectrum... but 2 girls. 2 girls that manifest it very differently from each other.. yet, very much the same and much differently than their male counterparts.

Jeneen Interlandi in her article, More Than Just 'Quirky, states this concern of mine more precisely:

“It's not uncommon for girls with Asperger's to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don't think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger's manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger's seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.”

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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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Keep Sick Kids Out of School

If schools (dictated by the state) didn't enforce strict attendance policies and had better defined truancy policies.....

AND if employers would honor a mother's (or father's) inherent right to take time off with her (his) sick children AS NEEDED....

THEN when a child was ill, the parents would have the freedom to allow their children to stay home as long as it took to get them well.

Therefore, If less kids were sent to school sick (even in the early/late stages of a virus), less kids would get sick and this would save the employers dollars; and student sick days used would organically be lessened too ~ resulting in the district benchmarks being met.

And most importantly our children would be sick less often.

So, School Administrators (including secretaries).... stop making us feel guilty for making the call not to send our children to school when the child is sick or showing signs and symptoms of becoming sick.

Employers..... change your sick leave policies. It is ridiculous to think a parent will only miss 3-5 days a year for themselves AND their children being under the weather. Especially single parents or dual working parent households.

Parents.... take your power back! When your child is sick the single most important thing to that child is a parent's care and presence. Keep your children home when they are sick!! Then other children won't get sick as often!!! And those children wouldn't pass it back to your children!!

A vicious cycle solved.

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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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