Anaphylaxis

Anaphylaxis now that is some fun stuff. Lets just say thanks to some kids popping balloons I got to experience it first hand.

First What is it?
"Anaphylaxis is a severe, potentially life-threatening allergic reaction. It can occur within seconds or minutes of exposure to something you're allergic to, such as a peanut or the venom from a bee sting.

The flood of chemicals released by your immune system during anaphylaxis can cause you to go into shock; your blood pressure drops suddenly and your airways narrow, blocking normal breathing. Signs and symptoms of anaphylaxis include a rapid, weak pulse, a skin rash, and nausea and vomiting. Common triggers of anaphylaxis include certain foods, some medications, insect venom and latex.

Anaphylaxis requires an immediate trip to the emergency department and an injection of epinephrine. If anaphylaxis isn't treated right away, it can lead to unconsciousness or even death." (http://www.mayoclinic.com/health/anaphylaxis/DS00009)

Now on to what happened.
We went to a friends house. Her son had graduated high school the day before and there were some leftover latex balloons. I didn't think anything of it when the kids grabbed a few and went in the other room  and started popping them. They were having fun.

My throat started feeling weird and I was a little dizzy so I stepped out for a minute. I came back in and it got a little worse so I said I have to go outside I can't be in here. So we all went outside. We were there for maybe 5 min and I grabbed my husband and about pulled him over. the sore feeling and dizzy had progressed to not being able to breath, I was confused, anxious, and  flush.

Husband at first didn't realize what was going on. He asked do you want me to call rescue. once I shook my head yes he knew oh shit this is bad. I was able to walk towards my house but collapsed in the driveway. I was still awake just not able to move anymore or talk. The response time for the squad was maybe 5min but that five min felt like hours to everyone.

I remember being put on the stretcher and a few things here and there but for the most part I don't have a clue. I know I got a IV, I know a ton of meds were use (I'm dreading this bill), I have to be on steroids, antihistamines and ativain for the next week while I ride the rest out. (the worst is over). They gave me a script for a new epipen because mine was so expired it couldn't be used. Of course the thing is $315 and they wonder why I didn't have a current one. We just can't afford it and do not have insurance so we kept putting it off. Of course wake up call we know I have to get one, I have to no ifs, ands, or butts. I could have died and a little shot may give me the few extra min I need for help to arrive.

My blood pressure never dropped mine went through the roof, my heart felt like it was coming out of my chest, the only way I could talk to anyone was to try and use my phone to type but little keys, not being able to breath, all the chaos going on it was hard.

Now we are left with explaining to Lucy what happened. That no it is not her fault. Add a new obsession making sure all late is out of the house.

I'm Sorry

To all the lives that have been snuffed out by a selfish person who just couldn't do it anymore.

I'm Sorry

I'm sorry this happened to you,
Please know you never deserved this.
No matter how much care you needed.
No matter how frustrated you got.
You didn't deserve this.
You never deserved to lose your life at the hand of someone who should have loved you.

You deserved Love,
You deserved care,
You deserved compassion,
Most of all You deserved to Live.

You deserved to love,
You deserved to feel joy, sadness, anger, most of all to feel loved.
You deserved to have friends,
You deserved to have a voice.

Instead someone decided that you were better off gone.
That you were less than.
For that I am sorry.
Your murderers will get no sympathy from me
I will do my best to make sure your stories are heard.
That people see how much you had to offer.

You were worthy of life.
I'm sorry you didn't get to live a long full life.
I'm sorry you were ruthlessly taken from this earth before your time.
We won't let your death be in vain.
Please know your loss is felt by many.
You have touched many whom never met you in life.

I hope you are at peace.
Your memory will never be forgotten.
In the words of Vince Gill
Go rest high on that mountain,

R.I.P. Alex

*TRIGGER*** MURDER***ABUSE***ETC

14 year old Alex Spourdalakis is longer on this earth. Why? Well the simple answer because two monsters, two people he should have been able to trust decided he should not live and stabbed him to death. His mother and godmother. I will not say their names because I want you to remember Alex's name not theirs.

You have to be a special kind of evil to stab your teenager multiple times. You know what they did afterwards? They showed no remorse they washed the knife and put it back in the butcher block. At some point after stabbing their child they both took a bunch of pills and laid down next to his body. They may have intended to die but they didn't. I would guess it was just for show and sympathy. If they really wanted to die they would have made sure they did.

Of course since Alex was autistic we only hear the bad about him. How stressful he made his mothers life, how violent he was, how his mother had no help. What about the good. I'm sure he brought joy to his family's life. The no help is a lie. DCSF reported that they offered mom help and she declined. She decided death was best Alex. They were found because Alex's father got worried when he could not reach them and called the police to check on him. I'm not sure how much of a role dad played but obviously he played some role if he not only called but was worried. Doesn't sound like a non caring dad who abandoned his child. But we don't know.

Very little is being reported other than to twist the story to the point that they make it sound justified because he was autistic. If this was a "normal" child there would be vigils. There would be people crying and saying how great he was how he didn't deserve this. There would be outrage. There would be demands for death for his murders.  Not statements like don't hurt this family further by jailing mom.

Instead we hear everything they can say to try and justify stabbing, they didn't pick a easy painless way to die. They picked a brutal and painful way to murder Alex. How did they look in his eyes while plunging a knife into his body. I won't make excuses for them and I will not accept any. You should not either. There is absolutely no justification for brutally murdering your own child.  They are murders and should receive the harshest punishment possible.

Dummy

Dummy by David Patten
My rating: 5 of 5 stars

"From his birth in 1954, David Patten was unbearably sensitive to the world around him. Unable to concentrate or learn the basics of reading and writing, he was punished and pathologized, labeled lazy, stupid, and a troublemaker. David was finally diagnosed with dyslexia, among other elements in the autism spectrum. But at a time when these disorders were little understood, David was unable to get the help he needed, and he gradually fell into the dark underbelly of American life. David's struggle to survive and find a life worth living included time in a mental institution for attempted suicide at fourteen, and life as a drug dealer in Chicago's criminal underworld. Eventually, David's exceptional abilities in abstract and analytical thinking led him into the technology field, and a lucrative six-figure career as a crisis manager and trouble shooter. His story of gradually transforming disabilities into skills, hopelessness into freedom is a testament to the power of the human spirit." (www.amazon.com)

This book is not your typical autism story. Honestly I think the author mentioned autism maybe twice in the whole book. This was the story of his life and what he did many times to survive. The book starts off with David being fired from a job he has held for many years. The bosses pretty much backdoor him out by refusing to allow him to do his job the way he has for twenty plus years.

Then he starts to talk about his life. His early childhood, his parents, and his brothers. His mother took him to doctor after doctor trying to find out how to help him. He eventually left regular school after a suicide attempt and a brief stay in mental hospital, only to end up at one of the worst alternative schools in Chicago. He did some time as a drug dealer.

At one point he was so determined to get a high school diploma that he ended up living in an abusive situation in California separated from his mother. Eventually he escaped the situation. With some help from state offices he was able to graduate college.

It was a good story and the author has obviously been through alot but he doesn't look back on his experiences as bad. He looks at them as what made him who he is today.

*I received a copy of this book through netgally. All opinions are my own and I have not been compensated for them*

Sometimes You Have to Pull Back

IEP for High School is done. Roger is considered twice exceptional and really no one at the table had ever done an IEP for someone entering the Advanced High School program. So this was new to all of us, really it will be a learning curve for everyone. Overall good IEP.

After some discussion it was decided it's time to pull back the supports. We know he can handle it and he can do this. We needed to do it though because if we kept everything as is the supports would exclude him from the program that academically he needs. I know that sounds scary but sometimes you have to do it.

What it all means. Yes he will still be receiving supports. He still needs help with organization, he does not want to give up a elective for guided study. So we decided right now he gets to keep them. At the end of first quarter if his grades are slipping he will be put into the guided study class. We will have to come up with some other ideas for organizing. He will also still be receiving speech. He will no longer be in inclusion classes he is going straight gen ed.

It sounds a little rough but in order to prepare him for college we have to start pulling back a bit. If we find out he still needs something we can add it back. He also is one that if there is something he wants he is motivated. So this is how it goes:

He wants to be in the advanced program for IT - so he has to keep his grades up or they will kick him out
He wants to keep all electives - so he has to keep up with homework or he loses a elective

This doesn't mean we won't help him. Actually it is the opposite, we want him to advocate for himself. Tell us what he needs, come up with ways to help himself.

We are not setting him up for failure but it's sink or swim time. Roger is going to have to rise to the challenge of the advanced program. We know he can do it. He has it in him and we know he wants it bad enough.

With that Middle School is over and on to High School.

Summer in The No Guile House

www.99hdwallpaper.com 

Summer is almost here. We are in the last week of school. Rogers last day is today. He is exempt from the last three days since he has good grades and passed all his state tests. The school said so. You better believe that was one form from the school he didn't lose. The one that said He didn't have to go the last three days.

So now with summer it becomes what do we do with these kids? Usually they would go to some sort of summer day camp, but this year with being down a car and all the money that had to be paid to a lawyer we just don't have the funds. So onto plan B.

Come Saturday we will start our weekly visits to the library again. All kids and even mom are signed up for the reading programs. I will print out the schools reading list for each kid as well. (yeah printer broke months ago, library allows us to use theirs for free). I also buy the kids the summer bridge books. You can find them here, at most bookstores and teacher stores as well. I know I give them homework but it keeps their minds busy and helps them not to lose what they have learned all year.

They also planted a garden not to along with husband so they will have to take care of that. The big one is a few blocks away while we are planting a small one at the house for them as well. We just found out the community pool is only a street away so once we buy our family membership expect us to be there a lot.

The church about a block away also does Vacation Bible School so we may check into that as a option as well. Mostly we are stuck to what is walking distance and living in BFE that's not much. We will go to the beach and stuff on weekends when husband is home. Later in the summer we have the Surfers for Autism program to attend. Probably the highlight of the summer.

So what do you guys do? What are your low cost fun activities for summer time?

Wandering Part 2

I told you our wandering story here. I said part two would be what you can do. If you're looking up what to do about or how to curb wandering, I'm going to assume you already have all the locks and alarms on your doors. Plenty of blogs talk about locks, gates, and door alarms so I am not going to. Homestyle Mama has some pictures of her fortress. Seriously gates and locks galore. The National Autism Society offers The Big Red Safety Box. The thing is the boxes go fast when they are available.  I'm going to let the other bloggers tell you about in home security and some of their stories. There will be a list of links at the end.

There is another program that many communities have. It is typically run by the local police departments. Project Lifesaver. Originally it was started for Alzheimer's. The stats for Alzheimers are terrifying 50% of people with alzheimer's will wander and get lost. Nearly half of those if not found within 24 hours will die. The Stokes County Mountain Rescue started using radio tracking to find lost hikers. In 1999 The Chesapeake Sheriff's Office in VA developed Project Lifesaver to help locate lost citizens. SInce then the program has spread to over 300 localities in 33 states.

Project Lifesaver is a program for families of those with Alzheimer's, Autism, and other disabilities that make them a wandering risk. They use a bracelet that transmits a radio signal. Every second, 24 hours a day the person can be located. Each bracelet has a different signal so an individual can be located. The search and rescue teams associated with Project Lifesaver are trained in special needs. Most participants in the program are located in less than 30 min. 

Each locality is different so you would need to contact your local police department to see if they participate. A sheriff from Fairfax Counties program was nice enough to talk with me about their program. For their county to qualify for the program:

                                             1. You must be a resident of the county

               2. the client must have a legally responsible caregiver willing to place client into the program.

                             3. The client and caregiver must abide by the conditions of the program.

                                          4. You have to complete a application process.

The program is a mostly volunteer program. Most counties have set their program up as a charity and accept donations. The donations help the fund the program for residents whom may not be able to afford it otherwise.

Beyond Project Lifesaver there are things you can do as well that are very simple. Visit your local fire departments and police stations. Many now have listings of residents with special needs. Just for the staffs info. It helps them to know that hey I might want to check on this person or they may not act as I think they should if they encounter them in public.

Ancora Impartial has some great tips here. Keep your kids photo current, fingerprints, keeping track of scars and birthmarks. In the event that a loved one goes missing you may need this information. I can not stress the current photo enough. A while back a 14 year old went missing, the photo that was shown was of a 5 year old. That does not help anyone. Keep photos current. Most schools now send home a little ID card around school picture time even if you don't order photos. Take a second and slip it into your wallet. That one second could shave hours of the search. The 14 year was found and returned home safely shortly after a current photo was released hours after the initial photo. Descriptions are great but a photo sticks in peoples mind.

Other Blog Posts on Wandering and or home security:

Ancora-Impartial

Mommy Buddy

Deciphering Morgan

Autism Mom Diaries

Yeah Good Times

Thinking Persons Guide to Autism

Stay at Home Crazy

Several (76 to be exact) Links here