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!!"

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 academic piece 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.”

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. ♥

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.

♥

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. ♥

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.

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.