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

Tag Archive: schizophrenic

Dec 02 2012

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


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.


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Nov 05 2012

Get #Autism help or advice while on the go


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 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. 

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Aug 23 2012



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

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Jul 04 2012

“Loving, supportive parent” or “a barer of false hope”?


I want to introduce to you all, my wife, Lizze. She’s an admin on this site but rarely ever posts. I asked her to post this today because I really, really liked what she had to say. I think that it’s an important message that may apply to many of us. If you want to read more of her writings, please visit her blog at


So Gavin has been having a more difficult time of things lately. Which makes me sad, not just as a mother but as his mother. Gavin is like a bead on a string – forever moving, forever changing…nothing is ever the same with him. One day he’s high functioning, full fledged Asperger’s-type behavior. The next he’s lower functioning, and acting more like a stereo-typical Autistic child,

Then when you add his schizo-affective disorder, OCD, PTSD, ADHD and bi-polar into the mix…he’s a very complicated little guy. Because of his complications, which seem to be mounting as the months go by (we’ve recently added seizures (which are continually getting worse), primary immunodeficiency, and dysautonomia), it’s been discussed at great lengths among his entire health care staff (pediatrician, psychologist, psychiatrist…right on down the line) realistically what Gavin’s options are as a teenager and then an adult.

Unfortunately, it’s been decided that realistically speaking his best chance at a life with any kind of independence is going to involve Gavin living in a group home. While I don’t like the idea of my baby in a group home. Actually, I hate it. Despise it. Loath it with every fiber of my being. I also know that it is Gavin’s best chance at “normal”. His best chance at doing as much of his life himself, with a little help from the workers in the group home.

A conversation I had with Gavin the other day about his future led me to wonder…am I a…

“Loving, supportive parent” or “an barer of false hope”?


Credit for this image belongs to

Gavin came to me the other day and he wanted to tell me what he wants to be when he grows up. He would like to be an author and “an amusement park designer”. There is no doubt in my mind that if any one thing were different he could absolutely reach those goals. However, he loses IQ points every year. He has far too many disorders, illnesses, disabilities stacked against him for him to be able to make it on his own. Well, that’s not worded exactly right. It’s not the diagnoses themselves that will prevent him from being entirely independent. It is the manner in which his diagnoses present with Gavin that will prevent him from being entirely independent and make a group home necessary.

Truth be told, if he wanted to work at the local gas station for the rest of his life…if that’s what he discovered that makes him happy, then I would be over the moon ecstatic with joy because he had discovered a job/career that he both excels at and it makes him happy. I honestly don’t care what that job/career is.

But when he looked at me and for a moment he was my sweet little Gavin. My big doe-eyed little boy from beforeBefore the nasty divorce from Nick and the even nastier custody battle. Before the Autism took over. Before the bi-polar/schizo-affective disorder started riding shot-gun to Autism. Before the OCD, ADHD and PTSD jumped in the backseat while Autism drove like a madman through town.

It was that little boy who asked me, “Do you think I can do it, Mom? Do you believe I can be and author and an amusement park designer?”

And I was that Asperger’s Mama. Locked in the Land of Black and White. The Mama who knew I was likely giving him false hope. But all he wanted, all he needed was to know if I thought he could do it. Did I believe in him? How was I supposed to tow a fine line at that point? Hell! How was I supposed to find a fine line at that point?!

I wasn’t and I couldn’t so I did what Mamas are supposed to do. I gave him hope. In my own, Aspie black and white universe way, I gave him hope. I just pray we can find a way to balance his drive and desire, my hope and a very healthy dash of realism to help us all survive.

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Apr 03 2012

#Autism, Animals and Independence


I wanted to share with you all another victory Emmett has experienced since getting his puppy, Bella. Bella is a Boxer puppy and Emmett’s new best friend. Our hope was that she would help to bring Emmett out of himself a little bit and we could continue to make some forward progress. I wanted to empower Emmett with a sense of independence, as well as responsibility. So far, Bella has not only made a great addition to the Lost and Tired family, but she has helped Emmett to do things that he has never been willing to do before.

He will now walk in the mud to go bring Bella back into the house after she goes potty. He as some significant sensory issues that have always interfered with him getting dirty. He normally will not tolerate his shoes getting muddy or wet. However, if Bella is involved, he is willing to do whatever it takes to care for her.

In the short video below, you will see Emmett, patiently trying to groom Bella. I only got the tail end of the process on film but you’ll get the point. He feels a sense of responsibility for her and wants to interdependently care for her as much as possible. She provides comfort for him when he is upset and consoles him when he’s in a fever flair and in lots of pain.

Animals and Autism can be a truly amazing combination. Please feel free to share your experiences with Animals and your Autistic child or child with special needs. :-)


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Apr 01 2012

#Autism: How I manage a meltdown and self-injurious behavior


The Lost and Tired family is once again struggling with daily meltdowns and ever increasing self-injurious behaviors. This is one of my very least favorite things to deal with because there is no clear cut right or wrong answer. As my son gets older and stronger, the severity of these meltdowns and self-injurious behaviors becomes greater and greater. We have been coping with severe meltdowns and self-injury for many, many years.

What makes this particularly challenging for me is the fact that more traditional methods or interventions don’t work with Gavin.

As with many Autistic children, everyone is unique in their own right and so it would stand to reason that behavioral interventions would vary as well. In Gavin’s case, we have had to employ a more aggressive approach. It’s not fun for me or my wife but it does have a proven track record of success. I’ll be real honest with you, when you’re dealing with meltdowns of this caliber, it becomes more about  bringing it to an end, than taking a softer approach.

When these occur, the entire family is thrown into upheaval. The younger siblings are terrified and there is the constant fear or someone getting hurt, not mention that one of my neighbors are going to call the police.

The priorities are to immediately ensure everyone’s safety. That often times means evacuating the the rest of the family to an upstairs bedroom, while I deal with the meltdown. When self-injury becomes a problem, I have to find a way to restrict his movement without making physical contact, at least as much as humanly possible. If he is being unsafe with his hands, I require him to sit on them, until they are once again under control and not a threat to anyone or anything.

Likewise, when his feet and legs become dangerous, he is instructed to sit like a pretzel. This, at least in theory, limits his movement and ability to kick anyone or anything.

When these events occur, it’s not about making Gavin comfortable, it’s about literally surviving the meltdown and limiting the risk of injury.

As Gavin gets older and struggles more and more with self-injury, it becomes so important that I document as much as possible because there needs to be a clear record of what happened and why he’s injured. It’s sad, but we have to protect ourselves in the event that any of Gavin’s injuries are ever called into question. If you asked me 11 years ago if I ever thought I would have to be taking these measures, I wouldn’t even be able to imagine why that would ever be necessary.

Time changes many things and sometimes, those changes are not for the better.


In this video, this is meltdown number 2 for that day. I’m out of patience and it was really hard to remain as calm as I did. I have to use a very gruff voice and be very direct with him. I can’t play into anything that he says because a large portion of what he says if for the sole purpose of manipulating me by attempting to make me feel bad. There is a long documented history of this type of manipulation. I’m not being cruel, this is simply the only way we can survive these meltdowns and minimize the fallout. 

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Mar 30 2012

A new journey begins: Dysautonomia


The Lost and Tired family begins a new journey

Do you ever have one of those days where you realize something and it pretty much turns your life upside down? If you have, than you know what I’m talking about. If you haven’t, trust me when I tell you it sucks. I posted earlier about a conversation I had with Gavin’s teachers this morning. I thought it was very productive and his teachers were very receptive and genuinely concerned. That goes a long way towards keeping everyone on the same page.

Basically, we discussed Gavin’s current struggles, of which there are many. The main concern centered around Gavin’s constant fatigue and stomach pains. We have been trying to figure this out for a long time and never seem to get anywhere. There never seemed to be a constant that we could isolate, that would explain what was happening.

I witnessed what happens to him while I was there this morning. Something is very clearly wrong, there is no question in my mind about that. His teachers don’t believe he’s faking anything and neither do we.

Essentially what happens is the following. Gavin eats breakfast and immediately gets so sleepy that he literally can’t stay awake. He becomes disorientated and literally walks into walls or anything else in his way. At some point he gets really bad stomach pains. Apparently the pain gets so bad that he is literally hugging a trash can and crying for his Mommy and Daddy. After a short time, the pain subsides and he moves on with his day. There’s more to it than that but in a nutshell, there it is.

I debated just pulling him today and getting him into the pediatrician’s office. I decided to leave him there and go home and talk it over with Lizze. We decided to call and get him in to see the doctor because this has been going on for way to long now. We ended getting him in pretty quick and subsequently had to pull him out of school.

The evaluation

When we arrived at the pediatrician’s office, they wanted a urine sample to rule out anything obvious. Turns out that his pee was in pretty good shape. That was good news….I guess. However, his doctor wanted to know what was going on. We explained what was happening to him every day. At some point, and I don’t remember when, the conversation took a turn. The doctor started asking us questions that we have had for many, many years now.

At some point, I also mentioned how Gavin doesn’t sweat. I guess that was the clincher. It turns out that Gavin may have something called Dysautonomia.

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.

credit: Dysautonomia Information Network

Gavin’s pediatrician said that the only reason he is even aware of this condition is because he knows someone that has it. Most doctors aren’t familiar with this because it’s not very common.

What the heck does this all mean?

Basically, here’s what is likely happening, at least in Gavin’s case. The moment that food hits Gavin’s stomach, the blood vessels and capillaries in his digestive track dilate. This causes a large volume of blood is shifted from other places to his intestines. The blood is shunted from places like, his brain. This causes the severe fatigue and disorientation. Because his body can’t regulate his blood pressure, it essentially crashes, causing him to become disoriented, dizzy and explains why he will literally walk into walls or trip over his own feet. In some cases, like what happened recently, he will even pass out.

He went on to explain that the stomach pain could be the fact that the body is producing way to much stomach acid for the amount of food he has ingested. Apparently, that can be quite painful. 

After 20 or 30 minutes, his body is usually able to adjust and his blood pressure balances out and the stomach pain goes away. Sometimes it takes longer but the point is that he eventually recovers.

Something else that happens is he can’t regulate his body temperature. This finally explains why he doesn’t sweat. We have been talking about this for years because we were concerned that he doesn’t sweat, ever. Everyone always told us not to worry about it or they didn’t know what was wrong. It also explains why Gavin is always so cold, even when it’s hot out. I’ve posted many times about the battles we have had with Gavin about sleeping with multiple layers of clothes and multiple blankets. We were concerned about him overheating but apparently we need to let him do that because it’s the only way he can regulate his body temperature.

We also learned that the reason Gavin eats so incredibly fast is likely because his body knows that the moment he swallows the first bite, the clock is literally ticking. If he doesn’t eat fast, the moment his blood pressure drops, he won’t be able to eat anymore. Essentially, the only way he can assure that he gets enough food before everything goes haywire, is to eat very rapidly.

The seizures, bed wetting and extreme thirst are also associated with Dysautonomia. I don’t know how many of you remember but Gavin used to vomit almost every morning after he woke up. That is also explained by Dysautonomia as well.

Essentially, the list goes on and on. Many of the things that we have been trying to find answers for are explained by Dysautonomia.

According to Wikipedia, the following are common symptoms but will vary from person to person. 

Symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person’s quality of life. Each patient with dysautonomia is different—some are affected only mildly, while others are left completely bed-ridden and disabled.

The primary symptoms that present in patients with dysautonomia are:

  • Excessive fatigue
  • Excessive thirst (polydipsia)
  • Lightheadedness, dizziness or vertigo
  • Feelings of anxiety or panic (not mentally induced[citation needed])
  • Rapid heart rate or slow heart rate
  • Orthostatic hypotension, sometimes resulting in syncope (fainting)

Other symptoms frequently associated with dysautonomia include: headaches, pallor, malaise, facial flushing, salt cravings, mydriasis (abnormal dilation of the pupils), constipation,diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures.Dysautonomia can also present with orthostatic hypertension. A full list of symptoms may be found at the Dysautonomia Information Network.             

credit: Wikipedia

What causes Dysautonomia?

What exactly causes Dysautonomia is not fully understood. However, the list below, quoted from Wikipedia, are suspected causes.

  • Autoimmune disorders
  • Lyme disease
  • Diabetes mellitus
  • Brain injury
  • Degenerative neurological diseases such as Parkinson’s disease
  • Genetic factors
  • Hereditary connective tissue diseases, especially Ehlers-Danlos Syndrome. In a study on orthostatic intolerance and EDS, it is suggested that the co-occurrence of these syndromes can be attributed to the abnormal connective tissue in dependent blood vessels of those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures. This in turn leads to increased venous pooling and its hemodynamic and symptomatic consequences.
  • Physical trauma or injury which damages the autonomic nervous system, as with Cerebral salt-wasting syndrome.
  • Mitochondrial diseases
  • Spinal cord injury (autonomic dysreflexia)
  • Hereditary forms, often together with a sensory neuropathy (hereditary sensory and autonomic neuropathy, five types)

credit: Wikipedia

Gavin also falls into quite a few of these categories as well. The interesting part will be learning which of Gavin’s conditions are primary and which ones are secondary. 

What’s next?

We have been referred to the Cleveland Clinic because we need to work with someone that specializes in this uncommon disorder. As I mentioned earlier, many doctors have little or no experience with Dysautonomia, so our options are limited. Apparently, the diagnostic process includes time spent in a hot box, in order to measure perspiration and the tilt test, to track his blood pressure as it responds to changes in Gavin’s position.

I have called the Cleveland Clinic to make an appointment, ASAP. However, because Gavin is on SSI and subsequently Medicaid, there is a bit of red tape we have to navigate through prior to getting an appointment. We should however, have an appointment made within the next 24 to 48 hours.

This is the only way to know for sure if this is indeed what we are dealing with. Right now, everything points to Dysautonomia, and for the very first time, all the pieces fit. Dysautonomia explains just about everything that has gone unexplained for most of Gavin’s life. As far as treatment goes, it’s very limited. However, we can make changes to his lifestyle that can help. We’ll know more, I’m sure , after we see the specialist and here what they have to say.

At this point, we have a direction to go in, that actually can explain just about every one of the bizarre symptoms Gavin has suffered with for most of his life.

Hopefully,hopefully, we will finally get some much sought after and desperately needed answers.

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