May 20 2013

Hey Hey, Boo Boo

So the big (HUGE!) news in our house is that we are in the process of bringing home a Service Dog for Collin.  Specifically this handsome German Shepard:

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His name is Bru, but goes by Boo or Boo Boo.

A service dog will provide a calming effect for those moments of high anxiety that exacerbate his tics.  We try to help, but nothing we say connects in those moments and dogs just have a natural way of calming when nothing else can.  Boo will be trained to be with Collin at all times and place his head on his lap when his tics start escalating. He can provide companionship for those moments where he feels depressed and no one understands. It is lonely and frustrating to be living with a constant, visible disorder that he cannot control. I am SO excited about this for him and am convinced it will be a wonderful, needed experience for him.

So back to Boo… it is funny how we found him. I asked my mom to call a couple of service/therapy dog companies who I had seen online. I was so drained after a night of trying to help him cope with everything but really wanted to get the ball rolling because the process can take over a year. At this point I was just wanting to gather information – Kind of research mode. My mom was happy to help so she called right away, then got a callback from one of the local companies. She had a long conversation with one of the managers then called me back and said, “Um, Josie.  I think I have a dog for you!” I was not expecting that so I was like, “Whaaaaa?!” in my head, but said, “Tell me more information, Mother.”

It turns out they had a dog with a personality who would be perfect for this type of work. (a calm dog in order to be a calming presence.) They had raised him from a puppy to be a show dog, but he grew a bit to big for the AKC requirements, so his hopes of being a show-dog were dashed.  But, hey that works for us! ;)  He has his “Canine Good Citizen Certificate” so he is already very well behaved, but they would train him as a Service Dog in ways that would help Collin specifically . Being a Service Dog would mean Collin could take him anywhere — which is great because anxiety/tics aren’t just a home thing. It is costly, but the price we would pay would be significantly less than other places I’ve looked into and it is a much better, personal situation because of these trainers.

They suggested that we meet this weekend so we could see how Boo and Collin would click and so far so good.  After meeting the dog and the awesome team who would be training him, we were very excited to make it official. He will be Collin’s and will eventually come home with us!  I’m not sure when that will be, it all depends on how long it takes the dog to learn what we’d need him to learn.

Bru

 

It’s all happened so fast that I’m a little shocked, but sometimes most of the time God’s timing is different than ours so you just have to roll with it. I’m mostly just excited to provide Collin with such a positive “tool” that can help him learn to manage something he very well may have to deal with for the rest of his life. He deals with such a barrage of negative throughout the day, I think it will be awesome to have a dog to counteract it and start loading up on the positive for him. :)

So… that’s the scoop! We are very excited and grateful that God opened the doors for this opportunity for him!

May 19 2013

A Rough Week

It all started with an incredibly hard few weeks with Collin’s Tourette Syndrome… We’ve already encountered some really difficult times with his tics, but this period of time was the worst yet and to a whole other level. It wasn’t that he was ticcing; It’s that he was debilitated because of his ticcing.

I posted this on my Aspie Road FB Page. It might give you an idea of the situation at the beginning.

click to read

click to read

I’m not sure if you know much about Tourette’s, but there’s no cure and not many areas of treatment – a lot of ideas, but nothing definitive. Most of what needs to be done is learn how to cope. The more stress you have, the more tics you have. Collin struggles with anxiety so the cycle becomes something like this: Lots of anxiety –> Lots of tics –> Feelings of hopelessness –> Depression –>Lots of anxiety –> Lots of tics, etc.  It just keeps going and becomes more and more overwhelming.

I had read that some people peak with their tics around age 11 and then can go down, but after this episode I realized I couldn’t wait in hope for that anymore.  I needed to be proactive in helping him learn to cope NOW… because unfortunately for MOST with TS, it is a life-long struggle. So we set up a neurologist appointment, but also started looking into bigger ways to help ease anxiety and thus, easing tics. We had to do something.

I was researching and was onto something really exciting, when we found out our sweet 12 year old Basset Hound, Lucy… who essentially grew up with Collin… would need to be put to sleep in just a few days. The timing couldn’t have been worse.

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We did our best to give Lucy a happy, spoiled, loved weekend. Then Monday morning, we put her down.  It was heartbreaking.  The little kids didn’t quite get it, but Dave and I were in tears all day.  Collin was sad, but said he was surprised he wasn’t sobbing.  Well, later that evening it all caught up with him.  Not in tears, but with tics. They were just as bad as the other night, but mixed with more sadness and anxiety.  It was horrible for him to go through and horrible for us to witness.  I love my son so much and to see him struggle so wholeheartedly and not be able to do a thing — well, it’s brutal.  With some prayers from family and friends we got through it and continued to focus on ways to help him cope.

We set up an appointment to meet with someone who we believe will help him tremendously… who we believe is an answer to prayer and fits Collin to a T.

And on that note, I will fill you in on who that is tomorrow…. ;)

Mar 25 2013

Finally I Understand

Source: imgfave.com viaJosie on Pinterest

Mar 3 2013

Drew the Singer

I love Netflix because Drew watches all of the cute little British shows and can now sing in a cute little British accent. :)

 

Dec 17 2012

Gossip Reporting

Together as a country we are mourning the children and adults senselessly killed in the Newtown, CT tragedy.  We will all go through our stages of grief, in our own way and at our own pace.  We will try to press forward with the holidays, and at the same time be constantly thinking of the families involved. It does not leave us, even when moving about our day.

So I hope this doesn’t appear insensitive as I discuss something that came out of the event that has effected me directly. My heart is right there with you, but it is something that has upset the entire Autism community… and I want to touch on it, being that this is a family blog about Autism.

At some point in the frantic reporting of the days horrific events, a reporter stated that it was heard the shooter had Aspergers.  It was also heard from multiple sources who didn’t want to go on record that the shooter’s mother was a teacher at the school, they attained a name and identified the wrong person as the killer, and whatever happened to that guy in the woods of the school that they brought in to question?

Remember, reporters these days are not reporting FACTS. They’re reporting what they think will give them the next big break, or the biggest amount of views.  They are essentially reporting idle gossip and speculation. Please be careful about what you believe… ask questions and always look to FACTS before you label an individual, let alone insinuate an entire group of people are more dangerous.

Speaking from my own life, with my own children with Autism (Aspergers is Autism), the link is ridiculous. Is my child socially inappropriate at times? Yes. Meaning he doesn’t understand body language, or struggles in school because of his short attention span and sensory issues. He has a hard time organizing… which leads to needing help or seemingly ignoring the teachers.  HE is NOT dangerous.  If fact, one of the biggest lies people seem to believe about Autism is that they lack empathy.  You cannot imagine how frustrating it is to hear that out in the news, when kids with Autism DO, in fact, have empathy.  They just don’t show it in the same way. That is TOTALLY different.

My son literally could not hurt a fly… he is upset if we try to swat them.  And there have been times when we find a bug at a store and he is so distraught that we HAVE to bring it outside to a bush “to give the poor thing a chance” and to prevent it from being stepped on. If he sees his brother or sister get hurt, he is much more concerned than other 11 year olds would be. In fact, at times, I’ve had to tell him to back up a bit and give us a little space because he is crowding me and trying to help too much.

Please don’t listen to reporter’s gossip of “so-and-so told me” and be part of vilifying an innocent group of people as a way to find answers in a senseless act.

Let us continue to pray for the victims and their families while holding our own families closer, as well.

Thank you for listening.

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I know this is long, but I hope you will read the statements below and consider them as well.

From Diary of a Mom’s Website:

“Fear becomes truth. Misconceptions and misperceptions and outright lies become the popular zeitgeist. Autistic people who have struggled for so long to be understood — who have finally, painstakingly made strides in changing age-old misconceptions about who they are – who have begun to be seen by  society in all of the glory of their complete human dimension are suddenly and terrifyingly thrown back at warp speed to the days of Boo Radley – to a time when it’s okay to channel society’s fear into that which is different – to point fingers at that difference and to connect it to evil – to blame it for incomprehensibly monstrous acts and in so doing to make them the target of all of our sadness and anger and desperate, aching fear that it could happen again.
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The media reports back on itself. The news itself becomes its own story. How many times have we heard in the past twenty-four hours. “As we reported in the wake of the Aurora tragedy …”
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Every time that we let this go, every time that those with a platform to make a change stand by in silence, fear grows.”

She also posts this statement from ASAN (Autistic Self Advocacy Network) :

“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newtown, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

And from Disability and Representation:

“Let’s get something straight right now. Autistic people have meltdowns because their sensory systems get overloaded and it hurts more than anyone who has never experienced it could understand. And yes, sometimes, people strike out in the course of a meltdown. Not always, but sometimes. Often, they strike out at themselves. And when they do strike out, it’s a spontaneous act. It’s a neurological response that is not even remotely close to premeditating a murder.

People in the midst of a meltdown do not take the time and the forethought to arm themselves with a bullet-proof vest and several weapons, make their way to an elementary school, and consciously target two particular classrooms of children and the school office. In fact, most people in the midst of a meltdown just want to withdraw and get away from people and the stressors that cause overload.

I’ve said it before and I’ll say it again: Autism is not a predisposing factor to premeditated violence. Autistic people are far, far more likely to be the victims of crime than its perpetrators.”