The 12 Days of Christmas, AUTISM STYLE!!!

On the first day of Christmas 

My true love gave to me

A poop smear on our Christmas Tree

On the second day of Christmas,

My true love gave to me,

Two parents coping, 

And a poop smear on our Christmas Tree

On the third day of Christmas,

My true love gave to me,

Three specialists a helping, 

Two parents a coping, barely

And a poop smear on our Christmas Tree

On the fourth day of Christmas,

My true love gave to me,

Four aides a training

Three specialists a helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the fifth day of Christmas,

My true love gave to me,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the sixth day of Christmas,

My true love gave to me,

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the seventh day of Christmas,

My true love gave to me,

Seven nights of peace and quiet

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the eighth day of Christmas,

My true love gave to me,

Eight doctors a consulting,

Seven nights without a wink of sleep

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the ninth day of Christmas,

My true love gave to me,

Nine brand new iPads

Eight doctors fired,

Seven nights without a wink of sleep

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the tenth day of Christmas,

My true love gave to me,

Ten kids eloping

Nine iPads a broken

Eight doctors fired,

Seven nights without a wink of sleep

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the eleventh day of Christmas,

My true love gave to me,

Eleven dads a drinking 

Ten kids eloping

Nine iPads a broken

Eight doctors fired,

Seven nights without a wink of sleep

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely

And a poop smear on our Christmas Tree

On the twelfth day of Christmas,

My true love gave to me,

Twelve mom's a squawking, about Autism, OF COURSE

Eleven dads a drinking 

Ten kids eloping

Nine iPads a broken

Eight doctors a fired,

Seven nights without a wink of sleep

Six IEPs, in one year,

Five once a week meetings

Four aides a crying

Three specialists helping, not

Two parents coping, barely|

And a poop smear on our Christmas Tree

To all our friends who live with Autism, the Primer's wish you all a very Merry Christmas!

A Pleasant Surprise

Today our visit to Chick-fil-a Quarry Creek did not go as planned. In the world of autism, or as my husband calls it, "Through the Looking Glass", that is not really unusual. What was unusual was how pleasant, in the midst of Austin, my 11 year old with autism, not wanting to leave Chick-fil-a, including a 15 minute lay on the floor in the middle of the walk way during the lunch hour!!!

The amazing staff at Chick-fil-a Quarry Creek and the General Manager, Giovanni, did not react.  They pretty much moved around Austin and never acted like there was even remotely an issue. Only one patron commented or in this case laughed (thinking I was a bad mom and that Austin had me whipped).  I calmly (for once) said loud enough for the patron to hear me that autism was not a laughing matter and that with 1 in 88 kids having autism he should get used to what he was seeing. He quickly moved away from me.

Giovanni,on the other hand, came over to ask if I needed help MORE THAN ONCE in the hour and 20 minutes we were sitting in the booth. He generously offered to give Austin a balloon or ice cream if I thought it would help.  I declined because I did not think it would encourage Austin one way or the other and because Austin has a milk allergy. Later Giovanni brought over a toy cow to help.  

After about an hour I decided to text a friend who has a child with autism and see if she could come help me escort Austin out and give us a ride home. When I told Giovanni my friend was coming to help me get Austin out, and that it may be a fight, he did not bat an eye, he calmly said that it would be "no problem".  I explained that he may have to explain to the other guests that Austin had autism and that we were not hurting him, just trying to get him to leave. I explained that sometime people not familiar with autism often misinterpret situations like this. Again Giovanni said he understood and that he would take care of it, if we needed it.

Fortunately Austin left easier than expected once my friend and I got him up on his feet.  In a world where the families of children with autism are used to being stared at, it was a pleasant surprise to be offered help and understanding instead. Thank you Chick-fil-a Quarry Creek and your wonderful patrons!! Outstanding work today, it was very much appreciated!!!

Until next time, thank you to all my friends with autism in their lives, because you remind me daily my family is NOT alone and a huge thank you to Rachel for saving me and Austin.  Thanks Rachel for driving around with Austin while I got my shopping done and then driving us home.  You are amazing!!!

Busing, Transportation and the Child with a Disability, Especially the Non Verbal Child, What to do?

I struggle with stories of children left in busses (but read about them every school year) or lost from bus routes, because I know there are bad bus drivers and bad people in the world.  I also know that there are honest people who drive buses and are bus aides in in the world.  My parents are both bus drivers and grandparents of a child with autism.  I worked for the same school district as they did, as a bus aide before autism.   

I have also had a contracted transportation company lose Austin for over an hour. With no explanation and no explanation on why he was 4 and the car seat they handed me was set up for a newborn. 

As a child of a bus driver, a former employee of a transportation company and as a parent of a child with a disabilities I can see all sides.  Instead of waiting until after the fact and something happens lets look at how we can prevent issues. 

Lets look how we as parents can be proactive and protect our children from this kind of thing. 

1) Call both the teacher and the bussing department when your child is going to miss school.   

2) Make sure your teacher is in the habit of checking his or her messages every morning right before school starts.  If you have to call last minute, talk to the secretary on campus and make sure they contact the teacher and let them know your child WILL NOT BE ON THE BUS!!! )  

3)  Ask your transportation company for their policy on how the bus/van driver checks out of their bus/van at the end of any shift including breaks and lunch. Most bus companies have policies on walking through the vehicle before you lock up.  Ask how they check and enforce that drivers and the company are enforcing those policies! Ask if they have cameras on buses/vans. 

4) If there is any issue, know your rights, know you can write bussing/transportation/car seats etc. into your child's IEP.  Districts will tell you no, but I can tell you according to the California Department of Education's Head of Transportation and the CHP Officer who tests all school bus drivers in California,  who both in the past wrote letters on Austin's behalf and put it into his past IEP's, yes you can and yes you should! 

Bottom line, we have a whole lot of non verbal kids out there and the only people out there protecting our kid are us!  

That being said, "stuff" happens and people make mistakes.  

Cover your child's ass and make sure you are doing everything you can to avoid "human error" and  mistakes.  Be smart, be a PITA!!  Your kid expects it of you and so do I!! Now go change the world, at least the world your kid lives in!!

It takes a village to raise a child, but what happens to the child with autism when their village is not there?

When they say it takes a village to raise a child, they are right. They also are even more so when it comes to raising a child with autism or their sibling. I know I felt the village with Ashley and Nick, especially when living in Cleveland with a very close net neighborhood, but some how autism divides you from that and you feel alone in parenting, protecting, and trying to teach the world about your child with autism. 

The parenting challenges of having a 12 year old, Emily,  and a 11 year old, Austin, who has autism, today are are different than I had when Ashley, now 22, and Nick, now, 20, were 12 and 10 (and pre autism).   

In the past, my big kids ran the neighborhood until the street lights came on, and had to obey all the parents in the neighborhood. Today my younger daughter plays close to home, her brother never leaves home with out a parent or adult close in tow, because of the safety concerns. The difference today is a way different type of parenting.  

Yesterday we went to a birthday party for another child with autism at a local waterpark.  Austin decided about 2 hours in that he no longer wished to keep his bathing suit on (a new behavior, that just recently started).  I decided to take Austin back up to the cabana and put him in his street clothes.  Austin sat quietly for a while, eating lunch and listening to is iTouch. Austin then indicated that he wished to go back in the water.  He would not put his bathing suit back on and long story short, began to meltdown, screaming, pinching, hitting, etc. 

I was told after the party, by the parent throwing the party, that she was proud of my  composure as Austin was in a meltdown, because she is always the one managing a meltdown with her kids. She also said she felt helpless standing by. 

Honestly her, the parents/families and therapists we were with did exactly what we needed, they just ignored the situation. They did not ignore the situation because they did not want to help, but instead because I had the situation under control.  They knew that staring would not help the situation. Had Austin or I been in real physical danger all of them would have stepped in. We were in a safe environment, even though we were out in public, because we were among our peers.   

The difference between what happened with my peers (other autism parents, etc) at this party and the rest of the parenting world or those peers of my past parenting life and even the people in my local community today, is huge!!! Earlier in the day at a local supermarket  a similar situation lead to stares and questioning looks of my parenting, because who would "allow" their 11 year old to act this way and why was I not "disciplining him more".  

This is generally why families like all of ours surround ourselves with families like ours. The same scenario at the grocery store DID NOT end with my having a calm composure.  I will say I did yell out something like, 1 in 88 kids have autism, get used this! (And anyone who knows me knows it wasn't a quiet polite yell). 

Another example of how the public and parents who don't understand or want to understand autism, is a melt down Austin had last summer which was way worse then yesterdays, and we were not amongst our peers.  I definitely was in trouble and needed help, every person at the San Diego Zoo's Safari Park with in hearing or visual distance of us, including employees, stopped paying attention to the Cheetah Run presentation and instead stared.  NOT ONE PERSON, other than the non autism family we were with offered help. It finally came down to the point where they had to bring a golf cart down to get us because there was no way I was getting Austin out of there. If the non autism family had not been there with us to go and ask someone to bring a cart, we may have never gotten safely out. By safely I mean Austin did not hurt him self, because he left marks on me.  (See below pictures, of the bruises a few hours after it happened, I also had a nice set of teeth marks and a few bruises on my chest and chest bone that would be inappropriate to post pictures of). 

The above stories sadden me, not because they happened to me.  Instead they sadden of how little the world has changed since Austin received the diagnosis on June 15, 2004. The conservative numbers then were that 1 in 150 children had autism. The conservative numbers today say 1 in 88 child born in the year 2000 (age 12) have autism.  Yet, in my opinion, the mainstream community hasn't become any more aware, or willing to step in and help out.  This despite a massive Autism Speaks autism awareness campaign a few years back and no matter how many years people waste their time lighting it blue every April and donating to Autism Speaks.  Some how the general public is still ignorant to autism and/or some how think they are immune to autism, and/or they think have no responsibility regarding autism.  The general population still just sits on the side lines and stare, making the situation worse for everyone involved.

I write this particular blog for many reasons, one is that I hope that someone who is not my peer/autism parent reads this and learns something. Even if the lesson is as simple as turning away and ignoring the situation of a child with autism screeching at ear piercing sounds or when they are in the middle of meltdown. Or that it is OK to step over and say, to the parent of a child who is slapping/hitting/melting down, in a non-judgmental voice ask, "Is there anything I can do to help you?"  I know sometimes it is hard to determined if it is appropriate to step in, but TRUST ME, your non judgmental effort, goes A LONG WAY in our world and in the quality of life that my child lives and even further in the quality of life of his siblings live!!!  As parents, we signed up for what ever child we got, their siblings did not.  Not having to deal with those "judging another parent" moments goes a long way for all of us in the situation. 

I  also write this  because I hope that it reminds my fellow autism parents and siblings of that at the end of the day we might be fighting this individual battle alone, but we are definitely not alone. We have kindred spirits standing with us at all times, even if they are only there in spirit.  I know reading and hearing about other parents and their life experiences with autism make me feel a little less alone!!! 

In conclusion, I hope our communities stop being not part of the autism, and realize we are one world.  Know that while autism may not be part of what you think is your "world", it is part of your world.  It is coming to a family near you or to your family sooner and faster than you think. Educate yourself before it does.  Help the families already in it!  Make a difference in the world around you! Step outside your comfort zone. 

Change doesn't happen somewhere else, change happens with you!! It happens with your thoughts, with your actions, with your attitude, and it happens when YOU MAKE IT HAPPEN!! 

Until next time, thank you to all my friends with autism in their lives, because you remind me daily my family is NOT alone and a huge thank you to all our friends and family that do not have a child with autism, yet still brave the outside world with us, even though the looks and stares get overwhelming!!