Category Archives: family

Numbers

With the CDC releasing new Autism prevalence numbers, 1 in 68 (1:42 boys, 1:189 girls), so close to World Autism Awareness Day I expect there to be a huge outcry encouraging us to “cure Autism” and “be aware.”  While I recognize that many families feel a cure would be a blessing, there are many families that do not want a cure.  (I do not want to enter that debate right now, I can see both sides)   Awareness is good as well, but it’s not enough.  What we need is acceptance and change.

If 1:68 children born in 2002 have an Autism Spectrum diagnosis, the National Autism Association estimates that there are 60,000 twelve year olds in the US with Autism.  That’s a lot of kids.  That works out to be almost one per grade, per class period in our neighborhood middle school.  In a few years those children will move to high school, then college (hopefully) and then the world.  Then what?

I know there will always be a push for a ‘cure,’ but that is years, decades away, if ever.   I suggest we push, today, for meaningful change that will impact our children and adults on the spectrum now, not in 20 years.  Change in funding, in services, in education, in supports but most of all in acceptance.

Many states now have insurance mandates, but many companies, for a variety of reasons, are exempt from these mandates.  My husband’s employer is one of those.  We do not get ABA as a covered service; we do not get speech therapy as a covered service.  Many families do not have access to the single most researched and effective therapy (ABA) through insurance.

Many schools do not provide adequate supports, especially in the upper grades, for students who are on the Spectrum.  Our neighborhood school was going to be able to provide facilitated support in three of seven class periods.  More than half of our son’s day would have had no supports other than the general ed classroom teacher, who may or may not have any training in ASD and education.  We live in one of the top districts in our state and this was what they had to offer.

Employers are beginning to seek out Aspies and Spectrumites who have specialized skills, and that is fabulous, but what about all the others?  Employers do not understand the unique needs of adults on the spectrum.  Many would make excellent employees, but there needs to be an effort on the part of employers and corporations to help find the right fit.  Data from the National Conference on Autism and Employment  estimates up to 90% of adults with ASD are un- or under employed.  This is not because they don’t want to work or are lazy, but because they cannot find the right job with the right employer.

According to Holly Bortfeld of Talk About Curing Autism, “The federal government has spent $1.6 billion on autism since 2006, but the money is not helping those affected in meaningful ways. We need to improve medical treatment for the many co-occuring health concerns of individuals with autism and address the wave of students who are aging out and entering an adult world with no plan for them. ” I feel we also need to improve insurance coverage and accessibility of treatment throughout the life span and the quality of school based services.  We must have more support for adults and employers.

Funding aside, we should also be working toward acceptance.  Awareness is one thing but acceptance is what we need.  We, as a culture and a society, need to learn to appreciate the way others look at or view things.  We need to listen to and accept different ways of thinking.  We need to understand that the ‘normal’ way is not the only way, the best way or often the easiest way.  We have so much to learn from individuals with Autism in our communities.  We just need to open our eyes and our hearts to them.  We need to open our minds to a different perspective……

If you are touched by Autism, please stop asking for awareness and demand change and acceptance.  If you do not know anyone with Autism, please take the time to educate yourself on Autism.  You just might find a new, beautiful way to see others and the world.

LEGOs

Life with LEGOs.  That would be me.  I am married, with 2 boys, 2 dogs, 2 cats, a fish a guinea pig, a lionhead rabbit 8 chickens and at least 1,000,000 LEGOs all under one roof.  We find LEGOs everywhere, in the boys’ rooms, in the playroom, on the counter, on the table, in the furniture, under the furniture, in the laundry, in the washer, in the dryer, in the dishwasher, in beds, under the pillows, under the bed, under our deck, in the tub, I have even seen a few in the dogs’ poo.

When our first son was born I joked that we wouldn’t have Barbie shoes to step on or suck up in the vacuum.  We had another baby 3 years later and hoped for another boy, which we were given.  Within another 2-3 years our older son started moving from DUPLO blocks into the regular LEGO bricks.  The Barbie shoe comment had come back to bite me.  We now had LEGOs scattered everywhere.  They are not so bad to step on; at least you can see the ones that could hurt your feet.  It’s the little hands and guns and swords that get sucked up in the vacuum.  And anyone who has ever played with LEGOs knows that the minifigures are the essence of LEGO.  It’s not the bricks, or sets, or cool ships-it’s the minifigures.  So we have repeatedly sifted though the vacuum canister looking to make sure we didn’t pick up a piece from a minifigure.  I, however, refuse to go though the dog poo.

I talk about LEGOs not because I have two boys and loads of LEGOs but because LEGOs are not just toy bricks in our house-they are a way of life.  Our younger son has Asperger’s Syndrome, a high functioning form of Autism.  For whatever reason children with an Asperger’s diagnosis seem to love LEGOs beyond any other toy.  I once read in a blog written by an adult with Asperger’s that “LEGOs are like crack if you have Asperger’s.”  There is even a therapy for using LEGOs with children who have Asperger’s to help with communication and social skills.   To look at our son is to see a normal, very bright, highly verbal child.  However, he is quite socially awkward, especially with peers.  He has he things that he likes and the routines he needs to keep, but we are very lucky in that he is quite high functioning.  His day revolves around his access to LEGOs or anything LEGO related (the LEGO video games especially).  LEGO access is built into his behavior plan.

But, I am not writing this blog to talk about LEGOs (although I am sure they will have a starring role in many posts).  This will be my way to share the experiences my family has.  I will include all the frustration, hope, sorrow, anger, joy, love and laughter that my life and family bring me.  I hope to give advice and get advice.  I hope something we experience can help another family.  And if I can make a few people laugh along the way…even better.