Autism Adult Housing Tsumani

In November I attended the 5^th Autism Speaks Town Hall Meeting on Adult Housing.  I was excited to go and left there feeling anxious, apprehensive, scared, and determined to help solve this tsunami that is about to hit communities all over the country if action isn’t taken soon or more like IMMEDIATELY.

Panelist Fran Solmor made the most personal and powerful statement to me because she actually a parent of a child and adult child with autism.

"I am here tonight because like all of you who are parents, I go to bed every night worrying about where our daughter will live when we are no longer around.  My greatest concern is this: will Sarah have a home and a community to live in?  Right now, the answer is that there are very few options.  Our job is to fix that problem."

I want to fix the problem too, but don't have the slightest clue as to where to begin, and what struck me at this event, was that none of the panelists had a viable plan or solution, and frankly that hurt my stomach, and made me cry.  It feels like diagnosis day all over again, Good Luck, see you in a year and they send you on your way.

Since my kids with autism, are still relatively young – 6 and 8 this month, housing was not on the forefront of my mind.  I’ve still been trying to maneuver my way through the IEP process and Regional Center labyrinth.  So I was frankly caught completely off guard when at this presentation most of the participants were saying there is a lack of housing.  No, not a lack of housing, there is basically for lack of a better word – NOTHING that will be there for my kids if action – serious action isn’t taken now.  That action needs to be taken legislatively, through the faith based communities, and the private sector as well trying to solve this problem.  While there was Senator Correa speaking at the event, I was left completely deflated with his lack of solution, and no words of HOW to make it HAPPEN.  And when I say IT I mean, actually housing come to fruition for the tidal wave of children reaching adulthood with autism that is coming to our state. 

One action item that came out of the meeting was the December 7^th Walk Now of Autism Speaks event at Anaheim Stadium, where Autism Votes will have petitions to sign to start the legislative process going.  There will be at least 5000 people that can sign these petitions and help move the process and get this in front of the legislature who HOPEFULLY will have our kids interests at heart.

I never thought I would say there was anything scarier in my life than my kids being diagnosed with autism, because there is not a “manual” on how to treat autism, so you basically follow “advice” and fly with whatever treatments, therapies, and medical interventions work for your kids. However, this new knowledge of how severely impacted our kids will be if all of us as an autism community don’t ban together and make a difference here, that is the scariest thing ever.  I have not slept a good night since, because I feel like I have to make a difference, and I can’t stop the worry of “What will happen to my kids, when I’m no longer here?”  So the only thing I can do to help stop that worry is take action.  I can not trust that our dysfunctional frozen government is going to be able to deal with this.  I can’t put my kids will being completely in that basket that I frankly don’t trust.  

I have always thought I would be there to take care of my kids, because they NEED me, and one of my kids is so severely impacted by autism, I have just cluelessly thought - "I can never die" - joking but not really joking.  And now I feel that thought is going to haunt me.

As a mommy, I have to now add to my already overwhelming plate of AUTISM to make a solution.  I don’t think the government will ever do anything to care for these kids adequately, so as a community we have to come together and think, plan and do something to make a community for our children and help avoid the tsunami of adults that are about to hit the system.

I am open and looking for any ideas anyone has here. 

Rebecca

Unspeakable Grit

Being the mom of a non-verbal child is a test of true grit.  I know several of us and our life takes on so many additional roles, including clairvoyant for our child, because most of the time we are trying to just figure out what they are communicating.

My oldest son has severe autism, is non verbal, and has been working with a communication device to help him get his voice and it has been a slow road but his frustration has been cut down a lot.

However, when I'm not with him, he is still in the big bad world alone with very minimal communication skills.  So I trust everyday that what I do and who he is with is aware of that huge safety factor.  Sometimes I feel confident in the people around him at school, and sometimes I'm stunned because it doesn't seem like they have ever heard of autism before.

Behavior is Language

Over the last several months his eloping (running away) has kicked up a notch and 2 times in the last week, one I witnessed myself, and one was told to me by a school aide, that he got away from his group and out of the building.  Thankfully, he was not able to get very far and was caught by adults both times.  We also have a documented case of him eloping out of his classroom and out of the building of school with 3 adults running and chasing him.  The part about all of this is none of the adults chasing him can ask him "why" did you run, "what" do you need, "what" can we help you with.  He can not communicate that, and that is where the grit comes in.  I have to buckle down now and make sure that my dude is under impeccable care.  Because I can't think of what would happen if he got away, it is unspeakable and unthinkable, and brings a flow of tears to my face that I can barely control.

So I have to go now, and ask, and beg, for my childs safety that he get a personal 1 on 1 aide to be with him all the time.  What can happen is unspeakable.  His school was built in the era, of love, peace, and Bobby Sherman and there is no fence and the campus is completely open, which was probably a very poor choice of locations when the district was choosing the location for the Special Education Children.  So I have to prepare myself for what I expect to be a battle, because really it is always about money, and someone is going to pull the I don't have enough money to provide him a full time aide.  Well those EXCUSES are no longer acceptable for me. The school districts have plenty of money, they just have to choose not to waste and abuse the funds they have, because that is the problem (and a whole completely different blog post). 

So begging for my child's safety is what is going to happen this week, and if we don't get what is going to keep him safe and a productive non disruptive student to his classmates, I will have to find a special education advocate, and fight the school and the district and ultimately win.  Because the unspeakable game here is that the districts want to give you as little as possible, hoping that you won't fight, and putting so many hoops in front of you that they hope you give up.  I do believe I have a slam dunk case, and will take it as far as it needs to go.  He's my kid there is no limit to the lengths that I will go to help him, I will turn over every rock and move mountains to make sure we get him where and what he needs to be a successful student.

Life Lessons of the Week

1. Consistency will bring success

2. Crazy people should be put on exile island

3. Facebook is not as fun as it used to be

4. People that go out of their way to be mean and personally attack are losers, and need to get a life

5. Another person truth is not my reality.

6. Never ever give up on your kids, friends, family and always hope for more.

7. Cut out negative people, they suck the life force of the universe.

8.  Freedom of speech is a beautiful thing.

9. Disagreeing with an opinion of someone is no reason to call someone names.

10. I do believe my oldest son will speak one day.

11.  I had free rent in the head of a big bully today, and while I feel like I need a shower after being in such a vile place, it took all the power out of the bully.

12. If you're going to throw something at me, I'm going to swing at it

There will never be a day or a place where I am okay with someone attacking a person because of a disagreement, if you can't have a debate without agreeing to disagree, stay out of the sandbox.

 It's a short life, and to spend an entire day, poking at someone because you have nothing going on in your world, is really sad, and I'm grateful that I'm not the one living that way.

Something different

A new school year to me always brings a maternal level of anxiety, and this year especially so.  My "baby" started Kindergarten, and it's a big deal.  He's growing up, he's making his way and I'm not sure I was or am ready to make that break.  I miss him during the day, but am immensely enjoying him when he comes home from school, with a new phrase or quirk that he has learned at school.  So I'm excited and apprehensive.

This year my kids are at different schools, so I have an added thing.  I have 2 groups of moms to get to know, 2 schools to volunteer at, 2 PTA's, and 2 teachers, and 2 principals.  All of that is enough to give me a case of the runs alone.

My stress exists on many levels.  The first day of school there are the "over achieving" moms that have gifts, and donuts, and chalk board photos of their perfectly coiffed children, in their amazing Nordstrom outfit.  I just have never been able to get all the stuff done that most moms do get done.  I accept it and know it is what it is.  I have come to accept that what my weaknesses are and what my strengths are, and that perfectly gift wrapped, and snack mom, well it just ain't me. I'm not a size 2, but I'm fit actually fitter than most 46 year old cancer survivors, I'm not the most popular blog in OC, but a lot of people like my blog, and tell me that.  My kids aren't the kids that other kids are dying to come to our house and play, but they are friggin' amazing every single day and can work circles around most of the over indulged Orange County children, they have their issues, and I couldn't be more thrilled to be their mommy.

And while I love to peruse on Pinterest.  I have a feeling that it is an evil plot by men to get women and moms to workout, cook and decorate immaculately.  And I ALWAYS feel like I am falling short.  I don't always have the perfect meal cooked, I slack on my workouts and take a couple of weeks off, and the only thing I can DIY well is drive a car.  Very little creative juices flow in my brain, and the stuff I copy off of Pinterest is just pitiful.

This year I am going to try and take a different tack, and instead of the constant feeling of inadequacies that I have to deal with everyday.  I'm going to try to just know what my limitations are, know I am good at some things, and if it's not wrapping 24 presents on time for Groundhog Day, sometimes I just am able to throw some cupcakes in a box, deliver them for no reason and they are met with the same smile as the Pinterest holiday porn tha is t peddled so viciously to moms.

I am practicing at getting better and doing things one day at a time.  I do not and will not have all of my Christmas shopping started, done and wrapped in the month of October or November.  But I will think small and finish the accomplishments.

Autism and life to me get overwhelming, and what I am going to do this year, is just get back to basics, and not making myself insane trying to keep up with the moms that are CLEARLY popping their kids ADD medication (just kidding).    I have finally come to the level of acceptance that is going to bring me some peace of mind.  I'm not a size 2, but I'm fit. I'm not the most popular blogger in California, but I love getting emails from the people that love what I write.  My kids are not the most popular kids in OC, but they are the most amazing kids I've met.  I'm grateful right now, and I haven't felt that in a long time.  My life is a blessing, and I need to realize that I am all I am and all I can do is be as awesome as I can everyday.  I'm attempting to be awesome, as awesome as I can and as awesome as I think awesome is.  If you think it's awesome it's a bonus, but the most important is that the people I share a house with get the most awesome me I can bring to the party.

I am going to make an effort to make sure I get my exercise, at least 20 minutes a day, cook 4 meals a week, and shuttle my kids to and from the 14 different activities and therapies they have a week.  I am going to focus on my kids smiles more than on keeping up with people that don't care if I am competing with them.

So to the 2014/2015 school year, we are going to attempt a BE AWESOME year, and hope you do too.

Rebecca

Rancho Las Palmas: Autism and a Special Vacation

This mommy needed a vacation in a crazy way.  It has been a long summer.  My kids have autism, so I was trying to find a place that could help me accommodate some of our needs, while being close to home, fun and family friendly.

After perusing the web, some blogs, and looking at #ocmomtravel I called up Rancho Las Palmas in Rancho Mirage, CA.  I saw on the web there was a Dive into Summer Special Rate. I  talked to their reservation line and told them about my kids and the vacation I wanted to take, and some of the special needs that my kids had, and I was amazed at the help and suggestions and willingness to make our stay enjoyable, so I booked us 4 days at the resort.  The concierge Eric Santos was very helpful in getting us set up and making us have a comfortable and relaxing vacation.

We arrived on Sunday afternoon and it was a very hot 112 degrees!  But have no fear SPLASHTOPIA was waiting for my kids and us so we DOVE into the pool and the water slide and it was like a HAPPY FACTORY for my water babies.


Our room was amazing, the location and the view were perfect for what we needed.  The decor was gorgeous, and my kids really couldn’t disturb other guests, which is a huge worry when I’m out.  One of my kids favorite things was the Fun Zone Arcade that was set up and open every day.  It broke up some of the pool time, and was a great way to keep the kids busy and out of the heat.  It was fun and they had so many different games and activities for the children, I was surprised, I’ve never seen that before in a desert resort.

We ventured out in the Palm Springs Area and had a date shake at Date Shield Farm, which was AMAZING, and reminded me of the date shakes at the Shake Shack in Newport Beach before it became a Ruby’s and before Crystal Cove was even a development.

My husband and youngest son took a trip to the Palm Springs Ariel Tramway one day and did a couple of mile hike, and it was a blast, as well as a great way to beat the heat on the desert floor, it was about 25 degrees cooler up at the top of the mountain.

We found some things in the desert to do with autism, and the hotel made us feel more than at home.  If you are thinking of vacationing in the desert area with your family and or your special needs child, I absolutely 150% percent recommend Rancho Las Palmas.  The staff on duty in the pool area were made aware of my kids and some of their personality traits and how to help them or work with them.  They were so kind and understanding and helpful it was beyond my expectations.
  

We had to cut our trip short by a day because the hustle and bustle of resort life was a little more than one of my kids could handle, and we left in a big hurry, and again the staff came to help and went above and beyond the call of duty and made our stay and our quick retreat out of there a great experience.  I can hardly wait to get back and experience the spa, and some of the other amazing features.

Autism is Not

 

Again, it happened again.  I’m devastated, and sad, and really wish we as a society could turn ourselves and work in the direction to help the mentally ill.

My thoughts and prayers are with all of those that are suffering in the wake of the tragedy at Isla Vista. 

Another mentally ill mad man did the unspeakable.  He went after innocence, he went after girls, he went after his roommates, he went after anyone that he thought wronged him.  He was certainly mentally ill after watching his multiple YouTube videos and reading his 141 page manifesto.  The break with reality was sad, and shocking that the system, his parents, and the police failed him, and then they failed the rest of us.

But all of that will be a can of worms that will be open and picked apart over the next several months.

Watching the reports this morning, I was saying to myself “Okay media, get it right, don’t do it again”. 

After the Colorado movie theatre shootings, there were multiple reports that that shooter was a loner and possibly autistic.  After Newtown, CT ABC News, "Shooter was autistic - with personality disorder".  The same thing happened the day after the Aurora, CO shooting.  Joe Scarborough of MSNBC said "These shooters are young, white, men, possibly autistic, loners.   Again after Newtown Piers Morgon on CNN had a psychologist who stars on a BRAVO reality show listening to millionaire cocktail queen Bethenney Frankel whine about her poor pathetic life, blathering misinformation about Autism. Piers Morgan then goes on to say how autistics are missing something in the brain. 

So I’m watching this morning, and praying that we’ve learned something from all this senseless tragedy  but no, this morning 3 reports went on to state that the mad man had POSSIBLY been diagnosed with “Aspergers” at a younger age.  NO ACTUAL FACTS, but on their race to be first to report they say Austim is the reason. So as other reports are stating Autism is a mental illness, personality disorder and behavior disorder.  Over and over to the point of nausea.  There are no reports or evidence that autism has EVER been the cause of violence.  In fact, there are more reports and research that those with autism are MORE likely to be the victims of crime, assault, and murder.  That is actual fact, and I apologize for the lack of responsibility that our media has taken in the race to be first to report even if what they are report is sensationalizing and not actual facts.

As the parent of 2 small children with autism, I am angry that the entire media has set back autism acceptance and awareness years.  These children have so much social stigma on them already, so much to fight through just to do what typical children do.  It was all shoved to the back of the bus by the large sweeping statements made by many bloviating windbags who did nothing but damage an entire community of people by their false misleading, misguided and uninformed reports.  My son does have public temper tantrums and outbursts, and can at times be aggressive.  I get the stares, I have had friends stop bringing their children here to play, what we really need to do is throw psycho killer on top of the stigma they have to carry on their tiny little shoulders.  Thanks a lot media.  I thought your job was to tell a story of what happened? Clearly not your practice anymore.  They literally set back the acceptance and understanding of autism years.

After the Newtown shootings  as I lost most hope for those in the media CNN's Dr Sanjay Gupta proved to be the voice of reason via social media.  On his twitter feed "Something needs to be clarified, there is no evidence of a link between autism and planned violent behavior".  Then Anderson Cooper took to the airwaves to debunk the myths being reported about autism.  So to Anderson thank you, to Megyn Kelly thank you, to Dr Gupta, we appreciate your truth, support and common sense in your reporting.

Megan Kelly was the first to report on America’s Newsroom Megyn Kelly "Autism is not a mental illness but a neurological disorder."  And believe it or not that is not very hard to research.  That exact definition is on the CDC website, the Autism Society, Autism Speaks.  So clearly our media and the so called journalists and anchor people no longer like to work they just want to report something first.

My heart hurts for my kids and then I was just overwhelmed with the thought of if a shooter came into my kids class.  My son cognitively would not know what was going on, he would not receptively understand instructions from the person trying to hurt him or help him.  The sensory overload of his nervous system would probably cause him to do something that would end up costing him his life.  THAT IS THE REALITY OF AUTISM that the media is missing.  These kids are more likely to be the victim, the helpless, silent victim of a crime than the perpetrator.

The pain that I feel for these children with autism that now have a new battle to overcome.  They now have to fight their way out of the reports of so called “journalists” that know not what they speak.  There are too many people that take the media seriously and will now be afraid of people with autism, will make more of a stigma on the kids than they already have.  I have a friend that always tells me "Your kids don't play with mine" "They don't share", "They don't want to be friends with my kid".   I have to constantly fight that kind of ignorance, and now I have to be an advocate for all the kids and families with autism that our kids aren't going to turn Psycho Killer.  The setback that our families get all the time is heart breaking, when the media goes after our children it’s devastating.

So as this tragedy is on the forefront of our minds, I hope we really learn that until we are ready to deal with MENTAL ILLNESS, we are never going to overcome this kind of event.  

The truth is there is evil in the world, the truth is we can’t hide it or ignore it.  Mental Illness is tragic, but it can be treated, ignore it and it is like putting gasoline on a fire.  That is what happened here.  We can not blame autism, or make autism a mental illness, when it is defined by the CDC as a NEUROLOGICAL DISORDER. 

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