Aug 23 2013
The stress of everything is getting to me again. Gavin seems to be getting worse and I feel completely helpless. The reality is that most likely this is just part of Gavin’s journey and there is no way to change course.
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Aug 22 2013
I’m really, really worried about Gavin. I don’t know what’s going on but he’s slipping. It’s gotten to the point that he can no longer figure out how to open the front door. We have three locks on the door and they aren’t exactly rocket science.
He used to be able to open the front door without a single problem.
Not anymore. 🙁
Today, Gavin was trying to get out the front door to get something off of our front porch. He was being supervised and had permission, so this wasn’t a problem.
Unfortunately, he couldn’t figure out the locks and I had to open the door for him.
This really scares me because he is no longer capable of performing this simple task. It’s never a good thing to lose a previously mastered skill. My heart is breaking….
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Permanent link to this article: http://www.lostandtired.com/2013/08/22/its-never-good-to-lose-a-previously-mastered-skill-its-heartbreaking/
Aug 22 2013
Dedicated to all those who can relate
I wish you knew what it was like to walk a mile in my shoes.
I wish you knew the challenges I face raising a special needs family.
I wish you knew that I need help even though I don’t ask.
I wish you knew how difficult and yet amazing my kids are.
I wish you knew how a random phone call could make my day.
I wish you knew how isolated and unimportant I feel.
I wish you knew how tired I am.
I wish you knew how much I hate your unsolicited and insensitive advice, especially in front of my kids.
I wish you knew how completely overwhelming life is.
I wish you knew how much my kids miss you.
I wish you knew how much I miss you.
I wish you knew what it felt like to watch your kids struggle through life.
I wish you knew how heartbreaking it is to hear, “your child is Autistic”.
I wish you knew what it felt like to be a special needs parent.
I wish you knew the sacrifices required to be a special needs parent.
I wish you knew the fear I have of the future.
I wish you knew what it feels like to lose everything.
I wish you knew how much I’d love to hang out, even though I can’t.
I wish you knew how much I resent the fact that you never call unless you need something.
I wish you knew how much it hurts to know my kids don’t remember your name because your never around.
I wish you knew that I cry at night because I can’t do better by my family.
I wish you knew just how much you take for granted every day.
I wish you knew what it felt like to be me.
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Permanent link to this article: http://www.lostandtired.com/2013/08/22/i-wish-to-those-out-that-that-simply-dont-understand-life-with-autism/
Aug 22 2013
Hey everyone. I was wondering if I could get you to take a second and help to support the Autism Society of Greater Akron by simply visiting their page
and clicking Like. If you want, you can tell them I sent you 🙂
Seriously though, this is a fantastic organization. $.81 of every single $1 raised, stays within our community and goes directly to help families and support those with #Autism.
If you ask me, this deserves a Like…….
I’ve made it SUPER easy for you. I’ve created a “Like Box” for their Facebook Page and posted it below. Simply click the “Like” button below and you will be “Liking” the Autism Society of Greater Akron’s Facebook Page.
Permanent link to this article: http://www.lostandtired.com/2013/08/22/support-the-autism-society-of-greater-akron-by-clicking-like/
Aug 21 2013
I wasn’t going to address this originally but I have since had a change of heart.
We’ve all read the infamous pink letter. You can read it down below if you haven’t. A great many people are angry over this letter and rightfully so.
While my thought may not be popular, I feel compelled to share them regardless.
Those of you that have been following me since the beginning, might remember my family being attacked in a similar fashion. Ours was in the form of some very, very hateful comments. Here’s a quote from that hate directed at my family: The post can be found here
“Let me get this straight… you have three retarded kids. That means that not only are you our your wife are making genetic failures, you kept right on breeding afterwards. Maybe you didn’t now about the first one immediately, and possibly didn’t know about the first by the time you had the second, but wtf at the third.
Do you plan on caring for these things their entire lives or do the taxpayers eventually have to baring the load of even more unwanted animals.”
I know first hand the pain these kind of words can cause. I was angry, hurt and ready to fight and defend my family.That said, you never know what’s going on behind the angry words. (See this to see what I learned about our situation.) So when I write the following words, I write them from the heart of a father who’s been there.
I understand everyone’s anger, I truly do. However, I have to say that I’m disappointed to see some of the things being said about the person who wrote this disgusting letter.
This isn’t about Autism Awareness at all.
No amount of Autism Awareness would help the person behind this letter to feel any differently. This is simply a sad, bitter and angry person, word vomiting hate speech in the form of a letter and directing at someone they perceive as weak or unable to defend themselves.
In truth, the family that was targeted by this letter is unbelievably strong, as they are doing things every single day that many others simply couldn’t, including the person behind the letter.
What I find unsettling is how the community is attacking this person and combating the hate with more hate.
Understand that I’m in no way defending the person that wrote this.The things in this letter break my heart and turn my stomach. I am however, concerned about Autism Community maintaining its integrity, during this period of time.
It’s my opinion that we should pity the person that wrote the letter, not hate them. By hating them, we are no longer setting a positive example. We are allowing this person to shift our focus off of what really matters the most. I know that it’s not easy, especially considering how hateful the words in that letter were. I do however, feel that we are better served by taking the higher road in this situation.
I also believe that we should support the family that was targeted and help them know that while hatred exists in this world, we are not defined by the thoughts and feelings of one cowardly person that writes hate speech.
We can all learn something from this experience.
We can’t change the world. No matter what we do or how much Autism Awareness we spread, there will always be ignorant people, always. They will make us angry and cause us heartache but they don’t have to control us. We don’t have to sink to their level of intolerance.
As a community, we need to put this behind us, while carrying the lessons learned with us on our journey.
If feel very strongly that by remaining angry and bitter, we are handing over control to people of intolerance. I for one, don’t want this to happen.
By moving on, we will show these people that their words cannot control us. We love our special children and nothing anyone can say or write in a letter will change that.
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Permanent link to this article: http://www.lostandtired.com/2013/08/21/combating-hate-with-hate-my-thoughts-on-the-infamous-pink-letter/
Aug 21 2013
I wanted to let you all know how orientation at the boys school went. First of all, Elliott ended up not going. Instead he spent some time with Grandma Gorski.
The rest of us went and met the boys new teachers and visited the classrooms.
Everyone is really excited and I feel like this is going to be an exceptionally positive year for everyone. I think that Elliott will do just fine and perhaps we will make another trip out before school starts next month.
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Permanent link to this article: http://www.lostandtired.com/2013/08/21/orientation-went-great/
Aug 21 2013
Lizze and I have never been thrilled with the fact that Gavin is on some of the medications that he is. Unfortunately, it’s not about what makes us happy or comfortable, it’s about what’s best for Gavin.
Because Gavin is so complex, the medications he needs to help manage his life are hardcore.
The silver lining in all of this is the reality that his life is dramatically improved by these medications. Gavin and a medication free life are simply not compatible.
While this is overwhelmingly positive, we do hit our fair share of hiccups or bumps in the road.
Gavin is on a medication called Clozapine. This is a very hardcore antipsychotic. In fact, it’s an absolute last resort and is the most tightly controlled medication in the US.
The red tape that we have to get through to simply refill his prescription is unbelievable but understandable.
In the beginning, we only received 7 days worth of pills at a time. Blood work was required every 7 days. The lab results had to be certified and faxed to the pharmacy. The pharmacy would then submit the results to the pharmaceutical company. The pharmaceutical company would then grant permission to the pharmacy to release another 7 day supply.
After 6 months, we received 14 days worth of pills at a time. The procedure was the same. Everything was just spaced out to fit the 14 day window.
Now we get 30 days at a time and blood work is only required once a month.
We’re now almost 2 years in and it took a year to get to the point of receiving a 30 days supply.
Gavin’s handled this medication very, very well. He’s had no side effects and his life has been dramatically improved. Unfortunately, this is the kind of medication that if he misses more than one dose, we have to start the whole process over. That means we loose 2 years worth of progress and must return to the 7 day supply at a time.
Occasionally, we hit a snag with his refills.
Today was one of those days. For whatever reason, the lab couldn’t fax the results to the pharmacy. The fax won’t go through and no one can figure out why. Neither the lab or the pharmacy are having trouble sending or receiving faxes to or from anyone else, just each other.
Until this is resolved, the script can’t be released.
Thankfully, we have enough to make it the next few days and I would expect this to be worked out long before then.
This so stressful because he’s recently maxed out on Clozapine and there is nowhere let to go from here. If we were to miss any doses, it could prove to be disastrous.
I’m confident that Akron Children’s Hospital and Walgreens will get this worked out.
These little hiccups turn what’s left of my hair grey.
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Permanent link to this article: http://www.lostandtired.com/2013/08/21/these-little-hiccups-turn-whats-left-of-my-hair-grey/
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