Boycott The Thinking Person’s Guide to Autism

December 31, 2013

This is very well said and I wanted to share this with my readers as well.

Living on the Spectrum: The Connor Chronicles

boycotttpga3

When you receive an autism diagnosis, where do you go for information and support? Many of us go to the internet and spend countless hours frantically researching everything we can about autism and how to support our child. At some point, most of us will find our way to a site called The Thinking Person’s Guide to Autism. It seems like a great resource with a lot of information about how to respectfully support your child.

And they are. Or, at least, they used to be. What started out as a place for autistic adults and autism parents to meet and share stories and ideas, as well as provide a unique, autism-centered viewpoint, has devolved into a place that is no longer welcoming of parents and is, in fact, hostile toward parents. It has morphed into a bastion for militant, angry autistic adults to run roughshod over others and insult parents…

View original post 1,247 more words

Advertisements

Autism’s hard to love club

April 11, 2013

This blog post is from one of my friends. Kelli Stapleton, otherwise known as Team Izzy, wrote this post about her reality in dealing with Autism and the reaction of others that should understand. This is a fantastically honest and candid post that I encourage you all to read.

The Status Woe

Autism’s hard to love club

 hard-to-love-club

Well, this isn’t the first time I’ve found myself on the wrong side of popular.  I have a daughter firmly planted in autism’s “hard to love club”.

She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples.  And her behaviors could be passed off as “age appropriate”.

She is a teenager now.

She is overweight.  It isn’t her fault; we had her on medications that caused her to gain weight.  A lot of weight.   But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.

She could care less about hygiene.   It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor.   Of course, her dad and I do what we can, but we aren’t with her every…

View original post 505 more words

Hello world!

March 11, 2010

Welcome to WordPress.com. This is your first post. Edit or delete it and start blogging!

Truth or dare?

March 11, 2010

So I have been toying around with the idea of opening up a little more. Being just a bit more honest about everything.  Let you all in on what it’s like to raise a child with autism or other spectrum disorder. It’s not like you see on TV most of the time. In our case it’s extremely dark and challenging.  I think I will do this in parts because honestly this will be very difficult and emotionally draining for me.

Here is my disclaimer: Gavin is no simply autistic.  He suffers from aspergers syndrome. Typically this means high functioning autism. In Gavin’s case this is not always true. Gavin is very unique in that he floats on the spectrum. This means that he can be high functioning (brushes his own teeth, dresses himself) and he can slide all the way down to low functioning (can’t dress himself, can’t brush his own teeth ect).   This is not very common at all. Gavin also has many other diagnoses. He suffers from bipolar disorder, OCD, PICA, Sensory integration disorder, PTSD, ADHD and Conduct Disorder. These obviously contribute to the over all complexity of the situation. So this situation isn’t typical.  End Disclaimer 🙂

Raising a child with autism or other disorder is very rough on the entire family. It is emotionally and financially draining. Every day is a constant struggle to move forward but most often it is a struggle to simply keep from regressing any further.  This takes an emotional and physical toll on everyone in the house. On the financial side of things it is almost impossible. People don’t realize that most insurance (at least in our experience and what others have shared with us) doesn’t cover autism. In Gavin’s case he is on disability. This means his medical expenses are mostly paid for by Medicaid. People like to judge those on Medicaid as lazy or irresponsible. Sometimes this may be the case but families with autistic children have no other choice. The truth is that Gavin can go through medication like water. This is because for some unknown reason Gavin metabolizes medication very quickly. So it we may go through 6 different meds or doses in a month trying to find one that works. In the past Gavin has been on $1000.00 +/month in medications alone. This doesn’t include the numerous doctors and special therapists. The typical specialist runs around $300/hr. Sometimes he is seen once per month or once per week. Sometimes he has 6 appointments in a week. For 2 years Gavin had 5 appointments per week and I am not kidding. The cost is staggering.

I have heard people make the comment (referring to Gavin’s Medicaid or SSI checks) that it must be nice to get a free ride. The reality is actually quite the opposite. There is no such thing as a free ride. Gavin being on SSI (which includes his Medicaid) is not fun. We have to sacrifice a great deal in order to keep him covered. We cannot have a savings account, retirement or even whole life insurance. We cannot have assets over a certain amount (under $5000) at any given time including our business. This means that when “things” come up we have no money.  We are self employed in order to more tightly manage our income. Running a business without capital is extremely difficult but we have stayed alive for 10 years.

The problem with this situation is that it is not possible to get out of. In order to pull Gavin off of SSI I would need to increase our gross income to $5,000 or more per month. That’s not going to happen right now. This is extremely demoralizing. I have very little hope for the future at this point. There is not financial security for us and that keeps me up at night. Trying to figure out bills is the very last thing on my mind when Gavin is psychotic and hearing voices. All you want it is to hold the crumbling pieces of your family together. It’s a balancing act that you are distained to fail. To say the system is flawed would be an understatement.

To Be Continued…………

 

Lost and Tired

Gavin, Gavin, Gavin

March 6, 2010

We can't resort to violence like spanking with Gavin (even though he has it coming at times) for a few reasons. We don't believe in spanking because there is no progression from there. Gavin will associate violence as a way of dealing with anger. The biggest reason is because Gavin witnessed his biological father beat Lizze for the first year of his life.

So we have come up with something even better and more satisfying. When Gavin makes a lot of bad choices and needs to be kinda put in his place we substitute his next meal with oatmeal. He isn't real fond of oatmeal when it plain. It's effective most of the time. He never learns from it which really makes it a pointless consequence but we have to keep trying or he will have no chance later in life.

Anyone have any other ideas they can share with the class?

Lost and Tired

Sent on the Sprint® Now Network from my BlackBerry®

The run down

March 6, 2010

Today has come and gone and where are we? Eliott Richards party was moved home from grandma and grandpa's house. Lizze and Emmett John were both sick today so we needed to change the venue.

I think it went over quite well actually. Elliott Richard was very happy and is currently exhausted.

Gavin is a different story all together. While we haven't seen any fits today we were constantly repeating ourselves. He was on the verge of being out of control all day long. Dr. R has increased the Zyprexa to 15mg in the am. He is still on 10mg at night. This is being done to hopefully silence the voices in his head. As with any med change we will have to watch him for a few days to make sure there are no side effects (especially with the increased dose).

My parents were here today and they are very supportive but I know they don't understand. We still get the looks when we correct Gavin for what may seem like no reason. We are very in tune with the way his mind works and we have learned to read the body language and know when enough is enough. I could explain over and over why we do things this way but honestly it's a waste of time and energy as no one will understand.

We have recently connected with a family through this blog. My wife and I can very much relate to this family. They face many of the same challenges we do. This is only the second time I can say for certain that someone knows what we are going through. Mark and Debbie are friends of ours from Gavin's school. They know what we go through because they go through it to. Our new friends Mandi and John are in the same boat. These are all amazing human beings and very good parents.

I am grateful because we can share our experiences with each other. It's nice to know you aren't alone isn't it.

We also have made friends with a family that isn't necessarily going through what we are but know about great sacrifice. They are a military family. Yeah I'm looking at you, Nicole and Chris. They have always been supportive as well and we truly appreciate them and the sacrifices they make to keep us safe. They have never judged us and only ever offered kinds words and prayers.

I just want to thank you all for being a part of our lives and being there for us and allowing us to be there for you.

Lost and Tired

Sent on the Sprint® Now Network from my BlackBerry®

March 5, 2010

We are celebrating Elliott Richards birthday today. We were also supposed to have Gavin’s blood work done this morning. As every single day before this plans change. Gavin is having a rough morning so there is no way we would be able to get him to and from the lab without MAJOR drama. So it will have to wait because Elliott Richard deserves his special day without Gavin raining on his parade. Lizze is out of her meds so she is in extreme amounts of pain. We are waiting for the refill to be called in from pain management. Today is going to be very hard on her so adding to the chaos is not an option. Over the past few years we have had to shift from what’s best for Gavin to what’s best for everyone else. I know that sounds mean but it is simply the reality we live in. We have to preserve the health of the healthy. No matter how much we pour into Gavin none of it ever sticks. We make sure Gavin has all the things he needs. As I promised the other day I am uploading the slide show of Elliott Richards begining. Enjoy.

Credit needs given

March 4, 2010

With all the joy that goes along with Elliott Richards birthday something slips through the cracks.

I want to take a few minutes and thank my wife for everything she sacrificed to bring Elliott Richard in to this world in the first place. You may not know that her pregnancy was VERY complicated. She was on complete bed rest for most of the EIGHT months she FOUGHT to carry Elliott Richard. She was hospitalized quite a few times for major complications like DVT's (deep vein thrombosis) or blood clots in her leg. These were very serious because any movement on her part could have caused her to throw the clot and that could have been fatal. She endured 1550+ injections and 2000+ pills over the course of the pregnancy. She gave up all of her freedom and suffered many indignities. She never once complained not even once.

I was the big tough firefighter/paramedic who has seen it all and I was a mess much of the time. She is truly the rock in our family.

Elliott Richard is here today because of her hard work and sacrifice. Lizze you are truly an unsung hero. It's time that your song was sung. I can never thank you enough for giving me Elliott Richard. You did it with grace and dignity. You are a shining example of what a mother is. Some day I will find a way to thank you. Until then I will have to keep trying. I love you. This day is your day also.

Lost and Tired

Sent on the Sprint® Now Network from my BlackBerry®

Time goes by to fast

March 4, 2010

I couldn't sleep last night. I was trying to recover pictures off a bad hard drive for a customer. Then I was thinking about what I was doing at that time 4 years ago. I was in the delivery room waiting along with my wife for Elliott Richard's arrival. We had no idea the what we were in for.

When it finally happened I was beside myself. It was the most amazing thing I had ever seen. I lost complete control over my emotions and sobbed like a baby. Words can't do the experience justice. In that moment my entire life was forever changed.

I have made several movies to document our experience in the nicu and I watched them all last night while everyone was sleeping. Seeing him in the NICU relying on a machine to breath and having his little hands tied down (so he could pull the tube out again) puts so very many things into perspective.

I will try to upload the videos as soon as I can.

Happy birthday Elliott Richard. You have no idea how much I love you but I will spend the rest of my life trying to show you.

Lost and Tired

Sent on the Sprint® Now Network from my BlackBerry®

Pink elephant in the room

March 4, 2010

Lizze and I had a conversation today about Emmett John that we both have been putting off.

Over the past few months we have been very focused on his hearing and speech issues. We realized we have overlooked some things. Emmett John smells everything, he has started with a few repetitive motions, he doesn't talk (probably hearing related) and throws himself on the floor. He is also hitting himself in the head.

Now these could mean nothing but this is how Gavin started. These are some of the things we missed early on with Gavin. Emmett John is still very engaging and actively seeks out attention which is good. We have been pretty tunnel visioned lately and missed some of these things. His doctor had already requested that he be run through the autism clinic at the children's hospital.

Everyone has decided that we are going to pursue the hearing issue first because that makes the most sense. The other things"could" be normal for his age. Since there is a family history it increases the chances that it could be autism related.

Lost and Tired

Sent on the Sprint® Now Network from my BlackBerry®