Alex, the reality of having a child with autism and the reality of having a child, with autism that has siblings.

I am a lazy blogger, I do it when it fits my schedule or truthfully my mood, generally my bad mood.

So tonight I see the following post...

"Mads: Mom. Why did Alex Spourdalakis die? 

(Cleaning kitchen, drop a bowl, stop in my tracks. Heart racing)

Me: What? 

Mads: Why did he die mom? When you had our class write letters to him in the hospital they wouldn't let us put our names on the cards. Why? 

Me: Honey, what happened to Alex is so complex. I just need you to know what is being said now, is not about Alex. Ms. Jeanna Reed and I got involved because we wanted the doctors that were caring for him to treat him for what was really making him sick. They thought his brain was broke, but his tummy was broke. Just like when we took Noah to see Dr. K and he started talking and going to the bathroom on his own. If we didn't take him to Dr. K, that would not have happened.

Mads: Why don't the doctors at the hospital Alex was at know? 

Me: Because, no one told them. They aren't allowed to see the research mom gets to see. And, if I didn't work really hard to find out what was wrong with Noah I wouldn't know either. But, I love Noah, we have help, and we are surrounded by people who love and support us who are really really smart and brave. Alex didn't have that. 

Mads: I just think it is really wrong he had to die, mom. 

Me: Me too. 

I rarely post about this. I have had to work incredibly hard to close this chapter in my life, yet the book keeps opening. I am no longer a working part of the team that will bring justice to this story. Not because I was not invited, but rather, because Noah's care requires too much for me to participate. If you are new to following me, you need to know the medical negligence that Alex endured is HAPPENING TO CHILDREN WITH AUTISM AND NEUROTYPICAL CHILDREN ACROSS THE COUNTRY. You need to know that Jill Rubolino and a handful of others will FORCE the change we need to see. With science, truth, and THE HEALTH OF OUR CHILDREN as the foundation for this profound shift in the way we view medicine. And, it will change not just medicine, but politics, parenting, and THE WORLD. If you leave this story with only the surface sentiment "I cannot believe she killed her child" then you REALLY REALLY missed the point. We all need to WAKE UP. We all need to see. What happened to Alex is a part of the systemic callousness that is pervasive in medicine right now. This child, whom I met, who pet my head...was treated like a caged animal. Like a beast. It was inhumane and unconscionable, the manner in which this boys pain was dismissed. He could not speak, so, he wasn't suffering. He was simply mental. Had they only read the science, the whole story could have ended differently. I will never ever forget, as we pleaded with his doctors, Jeanna, in her signature calm, poised and incredibly brilliant way saying, "Guys, it's all right here in front of you. This is your chance to be the heroes." There are no heroes in this story. Only Alex who made the ultimate sacrifice, for ALL OUR KIDS. 

RIP Alex. You will NEVER be forgotten.    http://www.cbsnews.com/news/film-provides-glimpse-into-life-of-autistic-teen-killed-by-his-mother/"

Today reminds me why I should do it more often.  (Hangs head in shame).

Here is the reality of what children of siblings with autism deal with day in and day out. 

I am thankful that I do not have younger children then Austin and that I never have to explain this kind of stuff. I hate that I have older children and we have to discuss this stuff. 

This is powerful and part of what families live with day in and day out. It is not just about the kid with autism but about the kids who live with the reality of autism and them having to figure out their place in the world.

It is also about the parents who are so overwhelmed and have no hope and what happens.

The reality is autism kills, and about every 2 months parents hurt, maim or kill their older children with autism.

It is not a pretty truth and it is not a right truth, it is a truth that AUTISM IS UNDER FUNDED, UNDER HELPED AND MISUNDERSTOOD.

When I ask you to donate for my 5k for Talk About Curing Autism I ask you to fund EDUCATION, I ask you to fund Hope and I ask you to fund #RealHelpNow

http://give.tacanow.org/2014/OcMarathonPrimerFamily/

Please donate and make sure that no other family has to have the talk that Lisa had with her kid and that no parent, like Lisa or me has to be involved in a situation or case like this.

Thanksgiving Left Over Recipe: Turkey Farmers Potato Cake Pot Pie

I started out the day trying to figure out how I was going to use the rest of that Thanksgiving turkey my husband said that "we" (meaning me) did not need to make for Thanksgiving.  Yes, I know he is odd, no need for turkey on Thanksgiving?  How unAmerican, lol.  That being said, I had made a ham, Tuesday night, and was also cooking a Prime Rib Roast for Thanksgiving  (but I refuse to say he was correct).

So today I decided I was going to FINALLY try Lisa Ackerman of TACA's Cream of Chicken Soup recipe, well in this case Cream of Turkey.

My 13 year old, Em, when I finished the soup was less the impressed.  I thought it turned out as close as you can get to Campbell's Cream of Chicken and still be Gluten, Casein, Soy and Egg Free. That being said, the 13 year old has never had Campbell's Cream of Chicken Soup in her last 9.5 years of life, and probably not that she can EVER remember, so she had no concept of what I was trying to accomplish.

The 12 year old with autism tasted it with objecting, so I will take that as a win.

After Em's less the stellar reviews, I decided I would figure out how to use the rest of our left overs to make something she would like and eat.   My first thought was I will make potato pancakes and we can use the soup as gravy, she'll eat that.

Then turkey pot pie popped into my head, yum, then I remember crusts are hard to make without eggs (And I suck at baking).  Then I decided that maybe I would combine the idea of Sheppard's Pie with Turkey Pot Pie and instead of a crust I would use those potato pancakes into a topping or semi crust.

Here is what we ended up with, and Em did give it good reviews...

Turkey Farmers Potato Cake Pot Pie

8 to 16 ounces of mixed veggies thawed if frozen (green beans,  carrots and corn)   

       

Soup/Gravy: (adapted from Talk About Curing Autism's Recipe)

1 cup mimic crème (unsweetened) 

5 table spoons GF flour (I used Jules)

5 tablespoons Corn starch

1 cup Earth balance (soy & dairy free) margarine

4 cups leftover Turkey split in half

Salt to taste

Pepper to taste

Garlic to Taste

4 to 6 cups Chicken or Turkey Bone broth strained of veggies.

Preheat oven to 350

Potato Cake topping:

4 cups left over mashed potatoes (approximately) 

8 ounces pear sauce mixed with 2 tsp aluminum free backing powder or 3 eggs

1/2 cup GF  flour

salt

pepper

garlic

onion (optional)

Directions:

Make the roux using a separate pan:

1)    Sauté the margarine until completely melted.

2)    Add flour and mix thoroughly to a very thick paste / roux.

Put chicken/turkey bone broth or stock in a large stock pan. Add in mimic crème, cooked roux and ½ of the cooked turkey. Wisk in corn starch.  Let cook until thick, stir frequently.  I put mine through my Ninja to make it really creamy, you could also do it in a blender.

Make Potato Pancake Topping in a separate bowl, I did it in my Kitchenaid.

Mix mashed potatoes, pear mixture or egg, GF flour, salt, pepper, garlic, and any optional ingredients, into a separate bowl and mix, I did it in my Kitchenaid

Put the Turkey Farmers Potato Cake Pot Pie Together

Put approximately ½ to all of the soup, mixed veggies (eye ball the soup and veggies for how big your pan is), and 2^nd half of left over turkey in a casserole dish (approximately ½ to 2/3 of the pan high).  Mix well. 

Put Potato Cake mix on top.

Bake for 45 minutes or until bubbly and the potatoes are starting to brown.  If it is bubbly and the potatoes are starting to brown you can turn to broil or 500 degrees and cook for 5 minutes longer.

Copyright Shannon Primer 2013

Life as we know it!

LJ Goes of the Thinking Mom’s Revolution posted an amazing status today.  Some one told her, "You know, what's hard LJ, is, it's just so hard for the mainstream to understand where you are coming from. Don't get me wrong. I think you are a good writer, I really do, lots of powerful stuff you put out there. Really. It's good. But, I mean, it's too much. From the vaccine court, to the food contamination you talk about...it's a lot to take in. People want to help you I think, they just...well they just feel overwhelmed by, well--guess the word is "darkness" of it all, you know? People just do not live like this. Not saying they don't, that's not what I meant, I mean...I believe you...it's just most people do not have this sort of desperation about them. Maybe brainstorm on how you could simplify it. Maybe...really drill down and then let me know how I can help you with that one issue. You know?" 

As Ed and I sat eating lunch today, I was telling him about this post and how I recently was told by another autism parent that I was “more intense” then most.  Ed commented on how many realities I do not post, and how lucky all my Facebook friends are that when we really went through “shit” literally and figuratively there was no Facebook.  There was no Facebook when our lives were lived in shifts so that there was someone up with the boy who only slept for 2 hours a night. That was the “intense” time when life was very “intense”; unlike now when the intensity only shows up every other month. We then continued on to how so many times when Austin was young we did not know we might be some version of “normal”. Somehow via the internet, yahoo groups, and then Facebook we were clued into the knowledge that we were NOT ALONE.  We may not be normal but we are definitely not ALONE.  The difference is most people in our position do not speak of it. I guess I could take away from hearing the fact that I am more intense them most, that maybe I post too much about the bad and not about the good.  Let me just put it this way: there is a song by Meatloaf that Ed listens to quite often that states “it was long ago and it was far away and it was so much better than it is today!”. Well that is not our life today. As intense as it may seem today, “it is so much better than it was yesterday”!!!! 

All I know is that when I write about autism, I do it from the perspective of a new mom or dad who thinks that their kid is the only one like this and that their reality is much like the land that Alice found herself in when she went through the looking glass. I want there to be a voice that shouts: you’re not alone; you’re not without hope and that things can and will get better!! I am also superstitious and every time I post Austin sleeps he’s up in the middle of the night.  Know if I do not mention him not sleeping, he probably did. Today was a great example.  As soon as I said at 3 am he was asleep, and I was going to my bed, he was awake at 5 am.

This also leads us to the subject of missing kids and how things go wrong quickly. Another Facebook friend posted how they did not understand how kids with autism get out. I think most people know that our family is hypersensitive about the chance that Austin will run off. But, like most of our kids, Austin can be gone in the blink of an eye. Both Ed and I, and the 3 older kids, have had our “track meets” running after a very cute, but very swift little blonde boy. We have both had to become much faster than anyone might believe by looking at us. No matter how much attention that we pay to this possibility, just last Monday, some how the front door was not alarmed,  and Austin went out the front door, he's new mo is to go to the car so I headed their first, when I realized he was not there, I shouted to Emily to secure the house and to tell her dad to run to Lake Blvd, A VERY BUSY STREET, as I ran to the complex park. Fortunately he had ran to the park. Literally all of this took place faster than you could hear the door shut.  These moments are becoming less and less, but every time Austin has an infraction, meaning he has eaten something he can’t tolerate the chances go up, significantly that this will happen.

So let us all understand that the parents of children who elope are not necessarily neglectful, our children are very attentive and will take advantage of any opportunity. Let us just be grateful that it didn’t happen to us today and say an earnest prayer for the parents of the children who have left the safety of their home, especially Michael Kingbury’s family who was found dead while we wrote this: May God keep our kids safe and may his Spirit be able to  comfort the parents of Terry Smith, who are at this moment the terrified parents of a child with autism who has gotten out!!!!!!

This blog was a team effort of both Ed and Shannon Primer and with a lot of tears shed because it hits way to close to home.

The NAA and TACA have also teamed up to help with wandering and given great advice on how to help your local first responders.  Please read this as it gives a small amount of the NAA’s  information on the subject.

http://pitaup.blogspot.com/2013/06/autism-and-wandering.html

Autism and wandering

I just finished up listening to Wendy of NAA on Talk About Curing Autism’s Autism-Related Wandering: Keeping Our Kids Safe Webinar.

I know that a few of our kids are huge wanders, bolters and runners, mine being one of them.  I thought I would share a few of the things I learned.

AWAARE is a GREAT resource.

This book is part of the NAA's Big Red Safety Box program should be printed and given to our local first responders, including firefighters, police, local hospitals, etc.  This book should be given to all caregivers of your child.

If your child wanders, bolts, runs, etc. fill this out in advance so you can easily give it to first responders.  Keep a current one in your car or in your purse for when you are away from home.

Wendy mentioned that many families delay in calling 911 due to worries about CPS and of police thinking that they are neglectful.  She said calling 911 immediately is the most important thing you can do. She also recommended keeping a notebook of all the preventative things you do, along with all of the incidents of wandering and what you did to try to correct the situation. I am a BIG fan of documentation.

As of 2011 we also have a VERY IMPORTANT new diagnoses code for wandering.  Getting our children the ICD-9 diagnosis can show that we are doing all the preventative measures we can to keep our children safe.  Having this medical diagnosis also can help with getting school districts to comply with keeping our children safe including helping with 1:1 aid supports. If this is a concern of yours please bring it up to your doctor at your next visit.

In San Diego we also have the Take Me Home Program.  If you have not enrolled your child in it, I highly encourage you to do so ASAP.  If you have enrolled your child, I encourage you once a year to look at that information, picture, etc. and update it.  For me I use Austin’s birthday as a reminder.

If you do not have a child like mine, please consider donating enough for a family like mine to get a free Big Red Safety Box. The alarms in the Big Red Safety Box have been a life saver at our house.

PitaUp and let’s keep our families healthy, happy and especially safe!

Mindless Chatter

I'm not sure which takes more effort reading or listening to a book. Either way I have realized I have missed my fiction. 

Since June 15, 2004 I have read one fiction book! I have read and read some more since then, just none of it has been mindless chatter. 

The last fiction book and ONLY fiction book I have read since meeting autism was Wicked!  It was on my way to the GOV rally in June of 2008, when I had no one to worry about and only me to think about, well if you don't count all those autism parents who looked at me to tell them when we needed to leave Feinstein's breakfast to make it to the GOV rally on time. 

After listening to the TMR I decided to "try" to listen to a fiction book. I started listening to Son of a Witch. I realized listening that I needed to revisit Wicked before listening to Son of a Witch because I have forgotten so much of the history.  Less then a week later, and much to the weird looks of Emily and Ed when they spoke to me and I did not respond because I had headphones in me ears, I finished wicked. I then turned Son Of A Witch on and I may never look or listen back again! I love mindless chatter, no disrespect intended, but that is what I think of mindless things that I do not have to think about but can enjoy while thinking about things non autism related. That beings said mindless chatter is also scary for me!  I makes me worry that something important on the table in my brain might get pushed off to store mindless chatter.  It is so weird for me to try to balance the two!  I don't want to stop learning or unlearn something that might help some parent like me or some child like me, but I do sometimes miss those days of mindless chatter where all my worries were about reading some fiction that took me to a different place like Oz and where like wicked the lines of good guys and bad guys and seriously misunderstood guys might some how be normal.  Oh wait scratch the last part. That is more of how I see life now and how I so now related to Wicked. Good and Evil are so easy to understand when you are little and things are black and white, but then you grow up and realize that there is perspective and that there might be a grey area!  I see a lot of myself inthe "Wicked Witch of the West" from the Wicked point of view, but if you have only seen the Wizard of Oz you only see her has bad. Autism and Oz have a lot in common and the lines often blur. Some days it's hard to tell who is a good guy and who is bad,  the politics, make it worse. 

And the end of the day, I am thankful that I read Wicked that June so long ago and that I have just reintroduced myself to fiction and listened to Wicked. It reminded me of grey and that things are not always black and white and that I should allow myself the little pleasures of fiction and that I just need to find a balance of between how much mindless chatter I let full my Brain, but that I am really really really allowed to have a bit of pleasure. I am an autism mom, not a saint.  I need to keep learning but if I self centerly listen to fiction while I selflessly keep my self in good shape by exercising or clean the house while listening to fiction the world will not end, but I just might be a little better mom and wife. 

Until next time PitaUp and go change the life of a kid with autism!

You are part of the community, until you meet Autism

I'd like to say I am a little disappointed with Carlsbad Unified School District, and my two youngest children's schools, BUT I CAN NOT say that, because, I AM MORE THEN disappointed with Calaveras Hills Middle School and Hope Elementary and CUSD that it is Autism Awareness month, and that I have not heard of one fund raiser for Autism or the month even mentioned. 

Both Hope Elementary and CHMS are our autism program schools, yet, I have noticed we, as a community, do not fund raise for Autism (but fund raise for many other conditions that are not affecting 1 in 50 school aged children). I sent in February a request that CHMS ASB  fundraiser Hearts for Hope or to fund raise for the San Diego Autism Society and no one contacted me or either charity.  I also sent Hope Elementary one fundraiser that we as a family were doing and I have yet to see ANYTHING come through School Loop and it is the 9th of April.

Before Autism and during the process of Austin's diagnosis the Primer family were huge fundraisers for both the CHS Football team and the CHS wrestling team.

I am a little more then sad, I AM A LOT sad to realize that once you meet autism, you are really, really, really alone and that your community leaves you there, ALONE. That no matter what you do, once you are no longer helping them, you are a then A NOBODY, you are JUST another family.  It really is a WHAT HAVE YOU DONE FOR ME LATELY society.

Do I regret all I did for CUSD? 

No, but I know that the organizations I support now will not leave me and my children, especially the siblings of the child with autism ALONE,  unlike the community Ed and I grew up in, the community that we fought so hard  to get back to, the community we wanted Ashley and Nick could grow up in, the community we still fight, to afford, so Emily and Austin will grow up in and be part of.

The Primer Family has two fundraisers that they are doing that directly make a difference in Austin and Emily Primer's life.  They are 

http://give.tacanow.org/2012/ocmarathon/PrimerFamily/

or

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1062386&supId=328467450

I hope that our Carlsbad community comes through and shows the Primer Children, the support that we have always shown the Carlsbad community. Until then, the Primer Family will fight this battle with the other Autism families in CUSD together as an autism family, but alone without our school district community.

Until next time PITAup and fight for a kid with autism!!  Also all views in this blog belong solely to Shannon Primer and are not from Ed Primer.

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!