I am not alone
January 21, 2009
I am so thankful for having all the snow days in December. It gave me some well-used time off work. Among other technological discoveries, I learned how to use Google Alerts and I have discovered a whole world of mom’s out there with kids with autism. I’m finding some really wonderful blogs that I’ll post on my blog for others to see. I just think its great to know there are so many of us out there and our experiences sound so much the same. These are just the blogs that showed up today on my Google Alerts - and there are some good ones!
http://fearlessfemales.blogspot.com/
http://momsofkidswithaspergersetc.blogspot.com/
http://parentingaspergers.com/blog/
http://unworthybum.wordpress.com/
A new day, really?
January 20, 2009
What a dichotomy! I don’t mean to sound so negative while it seems as though everyone around me is so full of hope - after all, I live in Seattle which is highly democratic. However, I had a very confusing day filled with so many emotions. While this blog posting may not have much to do about autism, you will see at the end that it actually has a whole lot to do with our cause at hand.
We have a new President, one that everyone is hopeful will bring change to the country. In the morning, everyone watched excitedly as our new President took the oath of office and also made history. At night, everyone celebrated - including very elaborate celebrations by our elected officials and with our tax dollars - just a reported mere $150 million of our tax dollars. Even if they only spent half that amount, wow!
Do you know what I was doing while everyone was celebrating? I was in a board meeting approving a bunch of job cuts. While our elected officials celebrated, real people were losing their jobs. Real people are living in the reality of this economic mess our elected officials got us into. Our elected officials are living in their political world - but I don’t think they are living in our world. While they danced the night away in their designer gowns and tuxedos, I had to go to bed at night knowing that I had just put people out of work. Somehow this seems so unfair. In what way did I contribute to our economic downfall? When I look at the details of what happened to our economy, I say a big fat “nothing”. I live within my means, I have no debt, I did not take advantage of zero down mortgages, I created jobs, I ran my organization well, I volunteered my time and contributed to society, etc, etc.
Among other things, our new President asked all of us Americans to be the change we want to see in the world, to take responsibility, and to be accountable. I have to say that I had very mixed feelings about this speech. I think President Obama gives great speeches - no doubt about it. He certainly has a way of inspiring the masses - sometimes I wonder if I missed the hypnotherapy session that everyone else seemed to enjoy. Well, we do need a President that can inspire people - yes, we do!
However, what about those of us that are already serving our country in more ways imaginable? What about those of us that have taken responsibility for our lives and the lives of our families? What about those of us who already hold ourselves accountable for our own actions? Why do we need to be told to do something we are already doing? What about you President Obama (you were afterall a Congressman the past few years)? What about you Congressman? What about you Administration? When are YOU going to take responsibility for what has happened to our country? When are YOU going to hold yourselves accountable? When are YOU going to be the change you preach to the rest of us?
President Obama, I just hope and pray that you live up to your promises to the American people. I wish you would have begun to be the change you preach on day one of your Presidency. You would have inspired me so much more by saying “no” to the establishment - saying “no” to the old ways of politics - saying “no” to the elaborate spending and pomp and circumstance - saying “no” to the blaming of others - and “doing” what you say you will do - from day one!
Let’s hope day two of your Presidency will be more productive. After all, if you were a CEO hired into a failing company, that company would not have given you a day of celebration, an elaborate party. That company would expect you to turn things around rather quickly, get to work right away. It should have been you making the tough decisions tonight, not me.
Many Americans are hurting. And I know all too well that those hurting the most are the ones in greatest need. Families of autism are among them. We have put much hope in you, Mr. President. Please do not let us down!
New au pair
January 19, 2009
Our au pair left after being with us for a year. It was interesting that she and my son seemed to butt heads a lot through the year. But, when he realized she was leaving, suddenly she was his best friend. He was attached to her hip… constantly. Our new au pair arrived two days before our au pair left. He quickly attached himself to our new au pair. He said that he heard this was going to be our last au apair and he did not want that. He wants us to have an au pair forever and ever. Today they went around the city, showing our new au pair Seattle, and my son was excited, even sent me a photo of the two of them from my husband’s IPhone. Transitions are an interesting time for a child with aspergers or autism.
The stories get even worse
January 18, 2009
This is an excerpt from an email that I received on a listserve that I am on - the sender agreed that I could post it here - to give everyone another idea of how this abuse is going on.
We are going through this with our son. King county DDD system is dumping our kids into places like Navos (West Seattle) which is a psychiatric hospital for adults (mostly homeless) who are having psychotic breaks and are picked up and placed through the court system. The staff at Navos did not know how to deal with him, and thought this was a bad place for him. We had to visit our son through the glass window of his cell for seclusion, covered in feces, urine, and NO HEAT! Did I mention no blankets. How did our son end up there? If 911 is called (in our case his group home manager called 911) your child is picked up by ambulance and sent to Haborview psych ward. Then they either admitted your kid there at Haborview or Children’s Hospitals. If they (the Hospitals) say no we can’t meet the needs of an autistic child (which they did in our case) then they are off in the involuntary placement nightmare and into the King County court system and sent to Navos for a 72 hour hold. Because our son is only seventeen he did get his own room in Navos (when he was not in seclusion for aggression). If your child is 18 then they get to share a room with an adult who they just picked up off the street who the staff may know or not. After a 72 hold your child is then taken by ambulance to Haborview Hall where your child is put in front of a judge who then questions your child. Of course our son cannot talk so the public defender asked the judge to appoint me guardian ad libum (sp?) which she did, and to ask the court for more time until a placement for him could be found. In his case he was sent by ambulance in restraints from Navos to Haborview Hall and when I saw him I had asked the ambulance driver to take off his restraints so I could put on some Neosporin on his open wounds. The public defender was helpful and told me to work the phones, and I did just that. I was trying to get him transferred from court to Fircrest, so that he could receive some long term care to stabilize him. The only one who can admit him to Fircrest is DDD, who refused to have him transferred from court to Fircrest. ( “Navos is a great place Rebecca” ) Which is a weird thing for a caseworker to say since she has never been there. The fact is we knew that he was doing worse and has been since Dec 13, 08 when I first asked our caseworker for help. I was trying to get him into a hospital setting, and possible Fircrest. When I asked our case worker she said Fircrest was closed (it is not) that if there is a problem to call 911 and he will get the best care that way at Children’s or Haborview. The only problem is what if they don’t want your kid or have no beds…well then a private hospital like Navos is the answer. Our son has had two stays at Children’s inpatient psych the latest was in December and they felt that there was nothing more they could do for him, because of his aggressiveness they no longer wanted to treat him and Haborview also said ”NO”. I was trying to get him placed at Fircrest, or another place that had a long tem medical setting, because he was not stabilized before his release at Children’s and he went back to school and his group home way to soon, and he was really too ill to be safe. The only problem was that DDD lied over and over again (saying little gems like: “it is not our problem it is a court problem if 911 is called”) . In fact the official email I got was to wait until he was 18 and they would have a bed at Fircrest. According to Fircrest they had beds available Now and Fircrest felt that he would do better there and they have had a lot of success with treating kids with aggression. The only problem was that DDD no longer wants to place kids there because of their budget shortfalls, and prefer to have our kids put in the court system (even if no one files charges against assaults). Because the child is no longer their “problem”. If our son was eighteen and 911 was called he could have gone to jail. This is the scary part. The official email I got about Fircrest from DDD that a bed would be opening in 3 or 4 weeks. They knew that he would have turned 18 by then, and is responsible for his actions, so he would have ended up in the criminal justice system. Nice. Also, I heard from three different facilities from various staff that they have heard that DDD is aggressively dumping autistic kids into the criminal justice system. This is my nightmare as a parent. And with yelling and screaming at DDD I got him transferred from Navos to Fircrest. At Fircrest they adjusted his medication and is doing just fine (he has been there three days now) . Wow! If DDD is not there to protect your kid why do they exist? If DDD would have given the green light when I asked for it over a month and a half ago there would have been no problem he could have gone there directly from his group home to Fircrest. Instead this is how it looked for us: Children’s Hospital 6 day stay, Haborview 1 day stay, Navos 6 day stay, Fircrest. What kind of treatment for our kids is this? It is less than human.This is what gets me what about the other kids who do not have a mom who can take the time to advocate for their child. I am furious at DDD for being rude, hostile, mimicking me and his court appointed attorney (we were both called stupid). But mostly for not caring for the person whose interest they should be looking out for. Thank-you all for letting me vent, and I would like to know if other had similar problems with DDD, and how did you handle this. Any information so that I can better advocate for my boy is appreciated.
The chasm widens?
January 17, 2009
This is a good NPR story:
http://www.npr.org/templates/story/story.php?storyId=98959992&ps=cprs&sc=emaf
Again, not knowing what the future will be like is difficult (I guess it is for everyone but even more so when you’re dealing with something like autism. It always worries me when I hear things like “the chasm gets wider when kids get to age 10 or 12 but isn’t so wide when the kids are in kindergarten”. The chasm seemed pretty wide to me in kindergarten!!
More abuse
January 16, 2009
Since the article came out about the 8 year old girl who was arrested at school, I have heard so many more stories of abuse. I’d like to hear from other families about this. If I can get enough stories posted, I would like to take it to our legislators to see what kind of legislation should be put in place to stop this NOW. I have plans to be in Olympia at least a couple times this session and could begin to broach this subject.
What will the future look like
January 15, 2009
Every day I think about the future for my son. I just learned of a boy in middle school who has Aspergers and is doing so well - on the speech team, on student government. I was so excited to hear about this. I would love to meet others who are older with Aspergers. For one, they fascinate me. But, also I know I could learn so much from them. I was fortunate to see Temple Grandin speak last summer at the University of Washington. I could have spent the whole day listening to her and learning from her. It gave me a lot of insight into my son’s brain. I’d love to learn more.
Handcuffed and arrested?
January 14, 2009
http://www.kxly.com/Global/story.asp?S=9669140
I am furious! I don’t know this family or this school. But, I am sorry. You do not handcuff and arrest an 8 year old girl with Asperger’s! What is wrong with our schools!!! How many times do I need to hear about a school restraining a young child with Asperger’s. When are the schools going to be punished for this type of abuse? It has to stop.
First of all, according to the story, she just wanted to wear her favorite cow sweatshirt. Big deal!
Second, why does the school not have the appropriate support services for this girl? If they had the appropriate support services, those qualified teachers/providers would be trained to know how to properly deal with this situation BEFORE it turns into an event where you have to restrain a child.
Third, who approved of this plan? Here is what the article states: “The plan, according to the district, says that “If a student assaults staff it is appropriate to call parents, involved support agencies, and local law enforcement officials if needed. All of the above occurred regarding this unfortunate incident.” Where is the plan that deals with what should have happened to the teachers when they restrained the girl for refusing to change her sweatshirt? When are we going to stop blaming kids with Autism or Asperger’s for behaving in ways that they think is appropriate? If someone is holding you down, you are going to do what you can to try to get away. When are we going to stop punishing these kids when the schools haven’t provided the necessary resources to the kids?
By the way, I have witnessed this restraint system that the public schools use. I have had MANY parents tell me this has happened to their child in the public schools. And many of these kids are now terrified to go to school, they end up being diagnosed with post traumatic stress disorder, and because of this, they lose all opportunity to succeed in school and in life. This makes me mad!
Ok - my next legislative fight will be - outlawing this type of behavior in the public schools and making sure the schools provide the resources that are legally owed to these kids. You have my word on this!
Autism’s False Prophets - a new book
January 13, 2009
Below I’ve included a link to an article about this new book. I have not read the book. I will not read the book. But, I have to comment on this issue - to vaccinate or not.
First of all, why is there no middle ground? Yes, people need vaccines to prevent disease. Yes, “some” of these people could be adversely affected by the vaccines. Why can’t we agree on this? Why can’t we agree that there is no “one size fits all”? I just don’t get it. In fact, even Jenny McCarthy says this is true. And she’s the one who seems to be bearing the brunt of this backlash. She doesn’t advocate that children should not be vaccinated. She advocates that we need to focus our research on finding out why and who will be adversely affected by which vaccines. We could some day have a test for every baby to see if their body can handle the vaccines BEFORE they are given the vaccine. She advocates that there is a slower vaccine schedule that could be given to kids instead of all the vaccines they pileup at once, perhaps some kids bodies cannot handle the amount of vaccines they are given at once. She advocates for more research in this area. She advocates for us as a society and medical community to just agree that perhaps we should be looking into this. With every research study you always start out with a hypothesis, don’t you? Why is it so evil to the medical community that you could start out a research study with the hypothesis that some kids could be adversely affected to vaccines? Prove the autism mom’s wrong if nothing else.
Instead, there is all this fighting. Doctors/medical professionals and the autism community acting like little kids fighting over their favorite toy. It is disgusting. It is a waste of time. And it is shameful.
I do not believe my son’s aspergers had anything to do with vaccines. He was born with a brain that works a little differently than neurotypical people. I also do not think there is ANYTHING wrong with his brain. In fact, I think we as a society need to place a high value on these kids with these brains. They have something to offer the world that NT people cannot. It is my mission to get the world to realize this.
But regardless if my son was affected by vaccines or not, does not mean that other kids aren’t. If I worked in the area of vaccine research, I would take on this research study. Unfortunately, I have a very NT brain and it does not have the capacity to do this kind of work - I was not one of the lucky ones!
Autism book takes aim at vaccine foes
A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the anti-vaccine movement in the United States.
http://seattlepi.nwsource.com/national/395802_vaccine13.html
“The Mad Scientist”
January 12, 2009
I always say my son is the most fascinating person I’ve ever personally known. He keeps life so interesting for me. He decided today that he wants to be a neurosurgeon who does brain transplantation. He said when people are “almost dead” he would remove their brain (wearing gloves of course so he doesn’t have to wash his hands!), store them somewhere safe (because you wouldn’t want them to get squished!), and then transplant them in other people’s brains. I said “would you do that when someone’s brain was injured or damaged”?. He said “No, I would do it if a boy wanted to play with princesses and a girl wanted to play with electronics, then I would give the boy the girls brain and the girl the boys brain”. My son is also a huge jokester. So I never know how much of what he is saying is to be playing a trick on me or if he’s being serious. I think it’s usually a little of both. He had such a big smile on his face as he was telling me this story. Had my daughter heard this, she would be in tears. The idea of someone “almost dead” and having their brain removed brings her to tears. But my son thinks it’s the most “matter-of-fact” thing and doesn’t bother him at all. Yet, there are some things that affect him so deeply emotionally. I haven’t quite figured this out with him. Keeps it interesting!
