Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: PICA

Jan 14 2013

Does this make me a bad parent?

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I’m only human. I’ll start by saying that. Secondly, I love my kids, challenges and all. However, we’re back to the fact that I’m only human.

My kids are extremely difficult to feed. It’s not their fault and I’m not angry with them in the slightest.

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God love them, but they will never just eat what they are given, even if it’s what they asked for. There are times that I will make and remake and re-remake their meals because either it tastes funny or there is some small imperfection.

Having said that, it does get really, really frustrating at times. Tonight happen to be one of those time that I got really frustrated.

Tonight, while I was going through this again, I started singing this song. It started out in my head and before I knew it, I was filling the house with my horrible voice. :-)

Tell me this isn’t perfect……….and all in good fun.

Permanent link to this article: http://lostandtired.com/2013/01/14/does-this-make-me-a-bad-parent-2/

Jan 02 2013

The 2013 #Autism Blogroll

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Welcome once again to the #Autism Blogroll for 2013

I’ve brought back my #Autism Blogroll for 2013 and we are starting fresh. If you added your link in the past, you should do so again. Every year I have to purge the database because there are simply too many links. So it’s time to add your link back. Read below for more information. 

Remember, this is open to any person, organization or business that has anything to do with #Autism or Special Needs Parenting in general. If you are a resource or company that provides products that benefit the special needs community, you’re encouraged to add your link as well.

I like helping people, especially those touched by #Autism and their families. Blogging has been a big help to me. I thought I would try to help the Autism blogging community by providing a page to submit your Autism or special needs related website or blog. I only ask that you add a link back to my site as well. Basically, you are adding yourself to my blog roll.

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This site, lostandtired.com receives about 30,000 hits a day, so this might help your site gain some visibility.

When visitors come to read Lost and Tired they will also see your linked blog, via my blog roll as well. This can help to drive traffic to newer and older blogs alike. The internet is literally filled with hundreds and hundreds of millions of websites. I think #Autism and #Autism related bloggers have a very important message for the world and I want to help your voice be heard. The same goes for other #Autism and special needs related resources as well.  help to get your blog or website some visibility also.

So I added a page to my blog called Autism Blogroll as well as a new blog roll widget on my front page. Also you can see the traffic generated to and from your blog as a result of this link exchange on the Autism Blogroll.

How do I add my blog?

All you have to do is go here or simply click on the Autism Blogroll page above.

Fill out the information and submit your site.

Please be sure to use this format for entering your web address: http://www.yoursite.com, the easiest way to do this is to copy your complete web address off of your address bar and then paste it into the form.

As soon as I see the submission it will be listed and appear in my blogroll on the front page of this site. It’s that simple.

Please include my link on your site as well by copying and pasting the following code into a text widget or other location on your blog or simply add me to your blog roll:

<a href=”http://lostandtired.com” title=” Raising 3 boys on the #Autism Spectrum” target=”_blank”>Lost and Tired</a>

This code will simply look like this once added “Lost and Tired

 

I hope you find this helpful. I think if we all work together and pool our collective resources, we can help our voices to be heard.

 

If you experience any problems adding your link to my Autism Blogroll, please don’t hesitate to Contact Me.

Permanent link to this article: http://lostandtired.com/2013/01/02/the-2013-autism-blogroll/

Dec 31 2012

My Broken Heart

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Please check out the follow up post to My Broken Heart. It’s a look back over the past year since this whole thing took place. See: Life After My Broken Heart

To my readers:

The story in the below post happened to me on February 22, 2011. This event has forever changed my life. Please help me share it. This is why we desperately need Autism Awareness. Thank you for reading and helping me share my story…

-LT

My broken heart: The Story of The Bare-Handed Man

It’s been a few days since I have spoken with all of you. Something happened to me a few days ago that I have been struggling to deal with it. I hope you all truly hear what I’m about to share with you. I want everyone to read this and know what happened. Not because of what I did but because of what I learned… Please share this story and help spread awareness.

A few days ago I went to Giant Eagle to pick up some groceries. We had a winter storm on the way and I needed to pick up a few things in case we got snowed in again. I pulled into the parking lot and found a spot right in front of the entrance. My back is out again so I can’t walk very far. As I was pulling into the spot I had to wait for some people to move out the way. They were just standing in the parking spot. Their car was in the next spot over but they just stood there and shot me a few dirty looks,  like “who was I to expect them to move”. I just waited, it wasn’t a big deal. I wasn’t even upset. They eventually started to get into their car and moved out of the way so I could pull in.

The snow had already started to fall and we were getting about 1″ per hour. I sat there a second collecting what I needed to take into the store. I just happened to look over at the people that were still getting into their car and I saw a large black man standing there. I didn’t see where he came from but in one minute he wasn’t there and the next minute he was.  Then I realized what he was doing. He was wiping the snow and ice off their windshield with his bare hands. The woman looked at him, like, “how dare you touch my car”.
She was clearly disgusted just breathing the same air. Instead of asking him to stop or giving him a few dollars she tried to run him down. She gunned the car forward so fast that her friend who was trying to get into the back seat had the back passenger door slammed on him and he was left standing in the snow. The man who had been trying to clean the windshield was knocked back. This woman just kept shouting things to the man with the bare hands.

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I was in shock. I had never seen anything like that before and I never want to again. A few seconds later the man gets up and walks over to me and knocks on my window. I hadn’t even begun to process what I had just seen. Now he was coming over to me and I had no idea what I was going to say. Shamefully, I was thinking “please not now, I just want to get what I need and get home”. Where I live it’s not uncommon for people to approach you for money. So I knew what was probably about to happen. I took a deep breath and started to open the door. The bare handed man opened it the rest of the way, being careful not to hit the car next to me.

The bare handed man was under dressed for the weather and obviously cold. He asked me for change. I gave him everything I had, $2.37. He started talking to me but couldn’t look me in the eye. As he was telling me how cold and hungry he was, I watched as he was unable to control his hands. It was like he was playing an invisible piano. He had a very hard time talking to me and I could see he was much more uncomfortable then I was. He clearly had boundary issues but I never felt threatened in any way. He kept staring off and would occasionally look in my direction but never at me and I never saw his eyes. He stood about 1 or 2 feet in front of me and asked me to drive him to a shelter because it’s “warm there and they have food”.  He informed me that he was “homeless and very hungry”. He then told me that he “was not lying to me”. He said “if I lie to you then you might not help me”. He asked me to buy him some food and gloves. I thought about what to say. I knew he would have hard time understanding. I don’t have any money. My family is struggling to survive each day. I would literally be taking away from what little my family has and I just couldn’t. I was trying to figure out how to explain to him that I couldn’t help him. I was lost for words.

Then something happened that shook me to the core and completely broke my heart. As I was trying to form the words I needed to tell him “no”, he looked me in the eyes. All of the sudden I was looking at Gavin. Gavin is the oldest of our three special needs boys (all Autistic). Gavin is 11 years old and is also diagnosed with schizoaffective disorder as well. Looking at the bare handed man was looking through some special window at my son Gavin, 20 or 30 years from now. It was a kick in gut. I was overcome with emotion. It was like I was run over by a freight train. I can’t put words together to really describe what that moment was like.

He again asked me to buy him food because he was hungry and gloves because his hands were cold. Something about him was so familiar and yet I’d never met him before. I looked at him and told him I would buy him some food. He smiled in my direction and took my hand (without looking at me) and led me into the store. He didn’t fit in with the rest of the people in there. His clothes were old, beat up and didn’t smell very good. He had clearly been through a great deal in his life and it showed in his face. I noticed the looks people gave me as I walked with the bare handed man into the grocery store. He asked me to buy him a gift card so he could buy food later on when he is hungry again. So we walked over to the rack and he picked out a Giant Eagle gift card. He asked for other ones but I just couldn’t. We went to the register to ring it up and I explained how to use it. I put $25 on the gift card and the cashier asked if I wanted any cash back. I had them give me $25 cash back. I gave it to the bare handed man and asked him to please buy himself some gloves and a bus ride to the shelter. The last thing he asked was to have the receipt so “when the police stop me, I can prove I didn’t steal this”.

He told me again that he wasn’t lying. I told him I knew he wasn’t. He turned to walk away and he stopped and looked in my direction as to say “Thank You” but didn’t. What he did said more than a simple thank you. He showed me his eyes again for a brief moment before he turned around and left. I stood there completely heartbroken as I watched my son Gavin walking away into the cold.  I was beside myself with grief. How could someone I didn’t know have such a profound effect on me?

I just couldn’t shake just how much the bare handed man reminded me of Gavin. I tried to finish the shopping I had to do but I couldn’t remember anything I was supposed to get. I walked up and down the aisles on “autopilot” doing everything I could not to burst into tears. I got to the end of the store and realized I still had an empty cart. All I could think was “how does that happen”. I was smacked in the face with reality. Someday I won’t be here to take care of my kids. What if this happens to them? What if they are the ones wiping off a windshield with their bare hands and almost getting run over by someone who clearly doesn’t care.

I screwed up grocery shopping. I just couldn’t focus on anything. I got what I could remember with what little I had left and drove home.  I was completely lost at that point. I just couldn’t process what had just happened. All I could think about was not allowing this to happen to my kids in the future. The horrifying truth is that someday I won’t be here for my kids and I pray they are never in that same situation. I truly hope that if they are, someone will show them kindness and compassion. These are my babies and I get sick to my stomach thinking about what their future holds.

I got home and unloaded the groceries and was in the kitchen with Lizze. I wasn’t going to say anything to her about it but I had to because we already were struggling and now things were going to be even tighter and she deserved to know why. I looked her in the eyes and told her what had happened. I just sobbed and sobbed on the floor in my kitchen. I couldn’t control myself or keep my emotions in check. That has only ever happened to me when I watched Lizze give birth to our kids. The past few days have been rough because I just can’t seem to get past this. All I can think about is my kids and their future. My heart has been broken and I live with the reality that this could be one or more of my kids in the future.

This has been very difficult for me to write. I’m still very emotional. Most parents will never know this fear but I do. Parents of special needs kids live with this indescribable fear each and every day. I wanted to share this story because we CANNOT allow this to happen to our kids. Please help me spread Autism Awareness. I don’t care what it takes but the world needs to be better. These people NEED compassion and understanding. My kids need your compassion and understanding… Please give them that much, I beg you….

 

I also published this article on CNN Health Check it out by clicking the CNN

logo. I rewrote the article so that more people, especially those unfamiliar with special needs parenting could relate. The article collected 37,000+ “Likes” and counting.

 

Please check out the follow up post to My Broken Heart. It’s a look back over the past year since this whole thing took place. See: Life After My Broken Heart

 

If you liked this piece, you might also like: 10 Things My Autistic Kids Wish You Knew or Thank You For Judging Me

Permanent link to this article: http://lostandtired.com/2011/02/24/my-broken-heart/

Dec 02 2012

#Autism: How I went from public service to public assistance

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There is a HUGE stigma attached to things like Medicaid and food stamps. Part of the reason for that is that these services are commonly abused. There’s not enough oversight and people who probably shouldn’t be getting services get services. People are upset about this and rightfully so. I see things on Facebook all the time about this.

People say things like “Wish I could call off of work today but I can’t cause to many people on welfare relying on me“. I’ve even seen things like “I’m off to work because someone has to support your family”.

These are said by people I know. People I have considered friends. It makes me feel sick inside to know that’s how they really feel.

What if one of these “friends” ever found out that I was one of “those” people or we were one of “those” families? Would they still think that way? Would they judge us just as harshly?

All I know for sure is that reading these things greatly adds to the feeling of shame I already have. I haven’t been honest about this for fear of my family being judged even more then we already are.

It just sucks on so many levels. My hope is that by sharing our story maybe people will think twice before they rush to judgement. Maybe people will be able to finally realize that there may be more to the story than meets the eye.

#Autism: From public service to public assistance

My family hasn’t always needed help to survive. I used to be a firefight/paramedic and I was good at my job.

I LOVED being a public servant. We weren’t rich but we had decent insurance, a roof over our heads and food on the table. I was able to pay our bills and sometimes even take my wife out to dinner. So how did I go from public servant to public assistance? In short, “life”. Life happened.

While on a call I was carrying a pregnant woman down a steep flight of stairs. I had to pick the foot of the cot up high enough to keep her level because she was hemorrhaging badly.  It was a stupid thing to do on my part but it was necessary and for the right reasons. In that brief moment, I did what I had to do. However, I blew out my back and ultimately ended my career. It was my fault and I have never regretted doing my part that day. I saved someone’s life.

I worked as a paramedic for a few years but since that day I have lived in constant pain. That was 10 years ago.

Since that day my wife and I have had 3 beautiful boys together. I love my wife and kids more then ANYTHING in the world but they aren’t without their challenges. My wife and I are parents to 3 special needs boys. All 3 of our children have been diagnosed Autistic. Our oldest is 12 years old and also diagnosed with schizoaffective disorder, PTSD, OCD, ADHD, Sensory Integration Disorder, reactive attachment disorder, primary immunodeficiency, marked autonomic disorder and struggles with PICA. He has been in and out of psychiatric hospitals for last last couple of years. He suffers from auditory and visual hallucinations and has been for many years. We have been through some VERY dark times with him and recently had to move him out of the house because of such extreme behaviors. It simply wasn’t safe for us if he stayed.

Our middle child is 6 and has Aspergers and is VERY high functioning. He struggles with severe anxiety, sensory issues as well as with ADHD. He has significant asthma and was just diagnosed with tree nut allergies.

Our youngest is 4 years old. He is Autistic and had severe food allergies requiring a tightly controlled diet. Thankfully he has been food allergy free since the summer of 2012. He was extremely speech and language delayed so even basic communication can still be a struggle at times. He has made amazing progress but it’s been a lot of hard work. All 3 of our boys have MANY sensory issues that require great sacrifice to accommodate.

Our kids require more than what we can possibly offer on the very best of days. Literally every minute of every hour of every day is completely consumed physically and emotionally caring for our kids. We literally drive hundreds of miles at times just for out of town therapies. I have drive over 100 miles per day, just taking the kids to and from 3 different schools. It’s an impossible task that all of the hospitals, doctors and specialists involved constantly tell us “I just don’t know how you do it”.

Is this enough to justify our need for public assistance? Because there’s more.

My wife is also chronically ill. She was diagnosed with Fibromylgia and chronic fatigue syndrome in 2005. She also suffers from severe reflux, chronic daily migraines as well as arthritis. Basically on any given day she is in excruciating pain all over her body. Her skin hurts to touch and her migraines last for days and sometimes months at a time. She is currently suffering with a migraine that has lasted almost all of 2012. That’s right, an entire year.

 In 2010 she was diagnosed with idiopathic hypersomnia. This is a disabling sleep disorder with no known cure. She would sleep 14-18 hours a days every day if I let her. No matter how much sleep she gets she’s never rested and always tired. Her pain has gotten to the point where there are days in which she requires a cane to walk. She’s 32 years old.

We have had to make great sacrifices and many difficult decisions in order to make it this far. For the last few years or so now I have basically become a single parent. That’s not meant to be a insult to my wife. She is just limited by her health right now and can only do so much but she gives us everything she has and I love her for it.

Over the years I’ve literally lost my career and our financial security. Our main source of income is residual from a small contracting business I started a few years ago. I can no longer physically work the business but I still have a guy working for me. It doesn’t bring in much but we have managed to keep our house but that’s about it. Our oldest is on SSI so that helps some as well. We literally count pennies at times. We have no future at this point because we cannot keep this up forever.

To further complicate things, Lizze has just been told by the Cleveland Clinic that she must undergo an extremely intensive chronic pain rehabilitation program. This program is out of town, runs 8 hours a day for 3 weeks and at a cost of well over $30,000. This is the only thing left she can do….

We rely on Medicaid and food stamps in order to survive. I’m not proud of that. In fact, I’m ashamed that I can’t take better care of my own family.. I assure you that I beat myself up enough for this on my own. Your judgement is not necessary.

As uncomfortable as I am using these services I’m so grateful to have them. It took me a really long time to come to terms with having to rely on these services.

I’ve worked since I was 14 years old and always earned my own way. I truly hate having to rely on someone else for my family’s basic needs. It’s humiliating enough without having people give me dirty looks at the grocery store. So please understand that if there were any other way we wouldn’t be here.

Why am I sharing this?

I want to people to know and understand that while some people abuse these services there are many, many more who don‘t. I truly hope that people understand that there is always story behind every situation like this.

Just because you see someone using a food stamp card at the grocery store or Medicaid at the doctors office doesn’t mean they are “lazy” or “milking the system”.  You have no idea what their story is and judging them based solely on the fact they need help is just wrong.

Please try to remember that there are many families out there like mine, facing challenges every single day that most couldn’t even imagine let alone survive.

Believe me, if I had it my way, things would be different. Sometimes life happens and we have to do things we aren’t proud of or comfortable with, in order to ensure our families survival. Please don‘t judge because life is already hard enough.

In Conclusion

This was not easy for me to admit, let alone write about.  However, instead of continuing to feel ashamed, I’m choosing to hold my head up high knowing that I love my family enough to accept the help we need to survive.

Please, if you find yourself in need of help don‘t let your pride get in the way of finding it. Don’t worry about what anyone else will think or say. They aren’t walking in your shoes. Don’t be ashamed like I was. Be proud that you had the courage to get your family the help they need.

Please feel free to share your story. I know it’s not easy but you have nothing to be ashamed of.



 

Permanent link to this article: http://lostandtired.com/2012/12/02/autism-how-i-went-from-public-service-to-public-assistance/

Nov 05 2012

Get #Autism help or advice while on the go

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As many of you know, I launched a support forum earlier this year. There were hundreds of members and tons of interesting conversations going on.

The Autism Help Forums weren’t for Autism related things only. This forum supports the entire special needs community.

Unfortunately, I lost the database and I had to rebuild the forums, from scratch. This means that I am rebuilding the community and need your help. 

However, out of the ashes of what was, has emerged something better.

I have recently relaunched the Autism Help Forums, with updated software and better Facebook integration.

Visit the Autism Help Forums, sign up and and introduce yourself. I realize that it can be tough to start the conversation but we need to break the ice sometime.

However, I’m most excited to announce the release of a brand new, vastly improved Autism Help app. Unfortunately, at the moment, this app is only available on Android.

However, if you’re using an Apple product, look in the app store for “Tapatalk“. You can also visit their site to find out if your device is supported.

These two apps are essentially the same. The difference being that the Autism Help app is customized for the Autism Help Forums and the standard Tapatalk app is not.

Both apps are free.

These apps will allow you to register, use and participate in the forums while on your mobile device. This is great if you have something come up and you need to vent or ask a question.

The Autism Help Forums are not meant to replace professional medical advice. However, sometimes it’s nice to get feedback and advice from people who actually live in the trenches and have been in your shoes.

That’s what the Autism Help Forums are for.  

You can visit the forums by visiting www.lostandtired.com/autismhelp or by clicking the banner below.

 To grab the Autism Help app for Android based devices, please click on the logo below or search the Google Play store for “Autism Help” on your wireless device. 

Permanent link to this article: http://lostandtired.com/2012/11/05/get-autism-help-or-advice-while-on-the-go/

Sep 22 2012

Post your favorite funny video

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I honestly have nothing against Apple’s products, just the business practices of the company behind them.

I stumbled across this video while on YouTube and thought it was pretty funny. Regardless of how you feel abot Apple or their products, this is some funny stuff.

Sometimes as special needs parents, we need to have a laugh or two. It helps to reduce stress, break up the day and it burns calories. Now who doesn’t want to burn some calories? Be honest.

Anyway, I thought we could give each other a laugh buy sharing funny YouTube videos. All you have to do is copy and paste the url into the comments and it will show up.

This is my favorite video for today.

Permanent link to this article: http://lostandtired.com/2012/09/22/post-your-favorite-funny-video/

Aug 23 2012

Home

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Do you ever associate a song with a specific place or event?

Yesterday evening, one the way home from the devastating appointment, this song was playing on the radio.

This song will forever be etched into my mind and associated with learning that my son will never get better.

Having said that, I feel like Home is a song about hope. If I had to associate what happened yesterday with one specific song, I think this was the perfect one. 

I’m not hugely religious. I was born, raised and remain Catholic. While I don’t buy into everything that has been taught to me, over the years, I do have faith.  After all we have endured and our children have endured, especially Gavin, my faith has been in question.

However, perhaps this is a sign that someone is looking out for us.

Maybe it’s a subtle hint that we are doing the right thing.

Whatever the case may be, I have found a new song and I really appreciate the words and the message behind it. I will listen to this whenever I feel my strength or resolve waning.

I wanted to share it with you. Perhaps you can find meaning in this as well.

YouTube Preview Image

Permanent link to this article: http://lostandtired.com/2012/08/23/home/

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