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

Tag Archive: ocd

Nov 20 2012

Confessions of a special needs father: My struggle with OCD


I’m going to confess to something that I’m quite embarrassed of and never talk about because I really struggle with this.

Something you may not know about me is that I’m rather particular about my things.  Some might consider it OCD but I honestly don’t know. 

For me personally, I can’t deal with things like dead pixels an LCD screen. 

While I truly love technology, I dread getting things like new phones, handheld gaming systems or TV’s/Monitors.  The excitement of getting something new is drowned out by the anxiety I feel over whether or not the display is perfect.

If I see a dead pixel or worse, dead pixels, I simply can’t cope with it.  Once I see it I know it’s there and can’t move passed it.


I’ve been known to return or exchange things many times, in an attempt to get something without imperfections. Often times, I eventually give up and either return or sell whatever product it happens to be. 

I know I’m not alone in this because a lot of techy people are bothered by this same exact thing. 

Last night, I noticed that my phones display is not perfect. 

My particular model uses a non-LCD type display, known as Super AMOLED. It basically a new display technology that uses different materials and functions differently as well. 


Dead pixels on an AMOLED screen are rare, but they do happen.  Another known issue with AMOLED screens are these black blotches that are visible in low light conditions on a black screen. These are extremely difficult to notice and some people may not ever be able to actually see them.

Basically, you go into a dark room and bring up a black screen.  Once your eyes adjust to the dark, the black image will actually begin to take on a greenish tint.  If you have any of these blotches, you’ll see very thick, dark, black lines or spots. It looks like someone wrote with a black  sharpie on the screen. 

These are only visible in these conditions and affect absolutely nothing else about the screen. 

Having said that, not all screens suffer from this. So to me, it’s a defect, even though it really isn’t. 

It does however, drive me absolutely crazy.  I won’t even want to touch the phone because I feel that it’s broken and it will put me in the worst mood imaginable. 

If I’m being completely honest with you,  it feels like my whole world comes crashing down around me. 

I know how ridiculous that sounds and I’m quite embarrassed to admit this but it’s true.

The reason I have brought this up is that I’ve noticed that my kids are doing the same things. They are extremely particular about these things.  While they don’t care about dead pixels or black blotches, they are profoundly affected by the slightest imperfections of other things. 

For example, Emmett is very particular about his food.  If he sees any and I mean any perceived imperfections in his food, he will refuse to eat.

Elliott is the same way about other things.

I realize that this is likely part of who they are.  However, I don’t want to contribute to this in any way.  If fact, I want to be able to help them to move passed this stuff. 

How can I do that if I’m guilty of this myself. My kids aren’t aware of my struggles but I’m aware of theirs. 

I have made a big decision and I wanted to share that with you all. 

I have decided to live with my phone the way it is.  Trust me when I say that it’s more easily said than done. I just can’t keep doing this and take the chance that my kids maybe learning this from me. 

I wouldn’t wish this feeling on anyone.

I want to be able to look my boys in the eyes and tell them that things don’t have to be perfect. It’s okay to live with life’s little imperfections. The imperfections make thing more interesting and unique.

If you’ve never dealt with OCD, you can’t imagine how controlling it is and how powerless you feel over your own life.

I’m hoping to lead my boys through this challenge.  I plan to do so by leading by example. My boys, their sanity, happiness and safety are way more important than having the perfect screen on my phone.

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Aug 24 2012

Operation Hope: Introductions


I have decided to call our new journey with Gavin Operation Hope.  I think the name speaks for itself.

So that’s that.

No progress was made today in the way of funding etc.  I have calls into Stark County Family Council but have not heard back yet.  I will be following up on Monday morning. 

I have to call the treatment facility and get some information as well. 

We haven’t said anything to Gavin and obviously won’t until the time is right.  However, when is the time going to be right?

I suppose we will have to rely on the experts to tell us the how and when to explain this whole thing,  not only to Gavin but also the other boys. 

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Aug 23 2012

A fragile hope


I wanted to take a few minutes and touch on something.  The coming months are going to be the most challenging the Lost and Tired family has ever faced.

Our journey is going to be taking a dramatic turn and I don’t know what that is going to result in. 

While I will do my very best to remain hopeful,  it will be a very fragile hope.

I know the reality and gravity of the situation.  I know that no matter what we do,  he can’t fix the parts of Gavin that are broken. 

Having said that,  I’m hoping that placing him into treatment will give him a chance to overcome,  at least some of these obstacles. Maybe he can at least come to understand his situation better and simply become more aware.

That’s something,  right?

In any event,  I have decided to be as transparent and honest as possible throughout this entire process.  Much the same way I am already. 

The reason for this is that I know there are others out there going through something similar.  I want them to see that they are not alone and that there are others out there,  navigating the same system. 

Lizze and I are fully aware that this entire process may be for not. We proceed anyway, out of love for Gavin,  even though the odds are not in our favor.

We want something good and positive to come from this heartbreaking situation,  even if that something positive is simply being able to be a beacon of light to those that will be following in our footsteps. 

Something good has to come from this.  Even if all we manage to do is give someone else a fragile hope.

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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Look for “Autism Help” app at the Google Play Store

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Aug 23 2012

Best Case Senario


I’m having the worst nights sleep in awhile.  Lizze was able to finally take something for her migraine, as her meds were finally called in.  Needless to say,  she sleeping quite well and that’s good.

I spoke with my parents,  late last night and went over what happened. 

This is what everything boils down to.  Best case scenario,  he goes away for 6 months to a year or more.  He receives a very specific and intensive treatment.  He eventually comes home.  Nothing will ever be fixed,  as what Gavin has broken is beyond repair.  However,  he may come back in a slightly better position. 

The doctor said that instead of 3 tantrums a day,  maybe we only have 1. That’s really the most positive outcome we can hope for.

It’s definitely a glass half empty kinda thing. 
The goal would be to help Gavin learn to do at least some of what doesn’t come naturally. For example,  he would learn to be more aware of others feelings.  He will never actually care but he can be more aware. If that actually makes sense.

Bottom line is that nothing will ever fix this.

Please keep in mind that I’m not referring to the #Autism but instead the other mental health issues.

Knowing that nothing will actually get fixed and the most we can hope for is a slight, possible improvement after a year,  makes this even more difficult.

Right now we are surrounded by uncertainty.

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

Please join our Autism Help Forums

Look for “Autism Help” app at the Google Play Store

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Aug 16 2012

I’m so done with this crap but I don’t know what to do


Gavin just had another catastrophic meltdown. Right now we are trying to figure out what to do.  The whole thing happened because his play was getting darker and he knows he’s not aloud to play like that with his brothers.

Not only did he lie when we questioned him about this but he freaked out upon receiving the consequences for his actions.

The punishment was that he lost the TV in his room.  That means we removed the Netflix box from his TV so it would be rendered useless. We told him he could still watch TV, just not in his room. All we did was take away a bit of his freedom.  That was it. We wanted to make sure that we had more to rake away,  should we need to.

He completely lost it.

I physically got him upstairs by walking very closely behind him and in a very firm voice,  tell him to move it.

Once in his room,  he proceeded to meltdown.  He banged his head on the wall and floor.  He punched his door and stomped his feet,  shaking the entire house and rattling all the windows.

As we are trying to find ways of addressing this behavior,  I decided to try something different.

During this meltdown,  Gavin stopped several times to fix the sheet on his bed or move something out of the way. I told him that as long as he’s not following the rules and safely being angry and frustrated,  I was going to take one object out of his room (at a time) until he was safe again.

He’s allowed to be angry and frustrated.  However,  he’s only allowed to kick,  stomp or punch his mattress.  He’s allowed to screen but only into his pillow or mattress and not the air. He knows this and I reminded him several times before beginning to remove items from his room.

I made about 5 trips before he decided to take my words seriously.

He, of course,  self-injured.  We,  of course,  didn’t react.  Not reacting makes him angry because he can’t control our behavior through his violet actions. The problem with him is that instead of just stopping the behavior,  he escalates to a point that we eventually have to intervene.

Thankfully, that wasn’t the case today and removing items from his room did the trick.

We didn’t call the police because honestly,  I’m afraid to take that step because there’s no going back. Plus,  I’m concerned about how Elliott and Emmett would react to that. That may totally freak them out and I know that Elliott would lose it and his anxiety would become even worse.

This is a really shitty situation to be in,  pardon my french.

A huge part of me wants to drag him back up to the hospital but that requires a huge commitment on our part and it’s a great deal of traveling. As bad as this sounds,  we simply don’t have the resources to waste on another pointless hospital stay.

I have to figure something out.  I know that almost no one will take him because he’s got so many medical issues. Our options are very, very limited.


This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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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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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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