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

Category Archive: Gavin

Apr 19 2013

How many of us would have the courage?

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Gavin, Mystery Picture

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April 19, 2013

Today was one of those days that Gavin needed to come home after school for a few hours.  I figured I would just take him with me to the grocery store. 

This would not only limit his time in the house, but also provide me with a chance to work on those real life skills he’ll need if he’s ever to live independently.

When I got to the school and Gavin came out, I was a bit caught off guard to see him dresses in an Iron Man costume.

Apparently, it was a special day at school and the kids were allowed to dress up as a superhero.

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Gavin was really proud of his costume and so I didn’t have the heart to make him take it off before going into the grocery store.  Maybe I should have, I don’t know.  I just didn’t see the harm.  If he was happy, I was okay with it. 

After telling Gavin that we were going to the store, I gave him every opportunity to remove the costume prior to going into the store. 

I told him that it’s totally up to him and he wants to wear it in the store, that was okay with me. 

Secretly, I was really, really hoping he would take it off but he decided that he would wear it. 

For the record, my concern for him wearing the costume was more about how people were going to react and what they would say.  When  it comes to my kids, I have a very very low threshold for people coming down on them for being who they are.

We did our grocery shopping.  A small budget means it didn’t take too long, which was a blessing at this point. 
I was wearing my Lost and Tired shirt and so some people understood better than others.  The looks both Gavin and I got were absolutely ridiculous.  I mean, we were in Walmart of all places. The whole “people in glass houses shouldn’t throw stones”  thing comes to mind. 

Some people smiled, while others laughed and pointed. 

I felt so bad for Gavin because people were just not very understanding.

There were a few moments where he seemed to be hiding behind me so people couldn’t see him. Other times he just walked with pride.

As well we’re walking out of the store, some idiot made fun of him, in a very loud, very obvious way.  Thankfully, Gavin didn’t realize he was being made fun of. 

I’ll be completely honest.  It’s been a long time since I’ve had the desire to knock someone on their ass, and if I had any less self-control, I would have.  However, doing so would have only brought attention to what this guy had said and I would have had to explain that to Gavin. 

Then of course there’s the whole lead by example thing that I’m so fond of.

All I can say at this point to anyone of those people that sat in judgement of Gavin is,  how many of you would have had the courage to dress up as Iron Man and walk through Walmart?


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Apr 19 2013

Spinning our wheels on the road to nowhere

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Gavin, My thoughts

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April 19, 2013

I got home a little while ago from our most recent wraparound meeting.  For those new, wraparound is basically a meeting with reps from various agencies.  They help families connect with services and sometimes even problem solve.

We have one of these meeting every couple of weeks.

Honestly, they been able to connect us to a few things that will help to prolong Gavin’s stay with his Grandparents. 

I’m starting to feel though that wraparound may have run its course.  I don’t know how much more they are going to be able to help. 

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Our situation with Gavin’s mental, physical and emotional health is very, very unique.  Everything about Gavin is also extremely complex as well as uncommon.  It’s for these reasons and a few others, that this entire situation is such a mess.

In my experience, most agencies can be of great benefit to people that tend to fall into a certain category.

If you fall outside of that category, things become more difficult. 

It’s not like they don’t want to help, because I know they do. The problem is that we don’t even fall into a grey area.  Our situation is so outside of what most people will have experienced that no one knows what to do. 

There have been plenty of times what where we have to really work to convince someone that we aren’t just making this stuff up.  Everything is backed up by medical records but I think it’s human nature to not want to believe that all of these things can happen to one child or one family.

Even when we do get everyone on the same page,  we’re very often on the outside of what they are able to help with. 

Today’s wraparound meeting was about trying to figure out what to do for this coming summer and how to consolidate his medical records.

I can handle the medical records, that’s not really a problem.. Right now it’s just finding the time and energy to compile everything into something that will be of benefit.

As far as this summer is concerned, we’re sorta on the outside once again. 

There are literally tons of options if  Gavin didn’t have the health issues. Camps and things like that are a no go because of his health.  There are local things like Kids college where he could go and basically take some really cool classes. This is something that we are going to check into. 

However, my concern is that when we have to disclose any health related problems, and we will, that it’s going to shut a great many doors. 

I can’t blame them for that because who wants the liability or to take on a kid that is medically fragile and have something happen……

I’m really overwhelmed at the moment and I’m not sure what we are going to do.  This whole process is tedious and difficult.  It feels like we are just spinning our wheels anymore. 

It feels like we’re on the road to nowhere….


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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Apr 19 2013

We knew this would eventually happen

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Gavin

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April 19, 2013

We received a call last night from Lizze’s Mom.  Apparently, Gavin completely freaked out on them.  He was playing Sonic on his tablet and must’ve gotten frustrated or something. 

Her Mom said it was the worst they’d seen.

Lizze spoke with her Mom to figure out if anything needs to be done. It sounds like they handled this really well and are even taking his tablet, at least for now.

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The problem here is two fold. 

The tantrum itself is obviously a behavioral issue and a safety issue.  However, this is also a potential life threat for Gavin because his rage could trigger another autonomic crisis.

I don’t know what to do.  Thankfully, they are working with a counselor type person from DD that is there to assist in such matters.

We also have a wraparound meeting in the morning. I have no idea what we are going to discuss but to be perfectly honest, I’m not looking forward to it. 

Lizze is in a bad place Elliott is really sick and Emmett is well……Emmett.

Actually, I think one of the things we are going to discuss is what to do with Gavin over the summer. I don’t hold out much hope that we’ll have many options, but we have to at least try to figure something out. 

I’ll update you all, after the meeting is over. 


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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Apr 18 2013

He simply can’t come home

Categories:

Gavin, My thoughts

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April 18, 2013

Something I don’t talk about very often in my outlook on the future. It’s not that I’m hiding something from all of you, it’s just that I don’t like to think about it. 

Why? Why don’t I like to think about the future? Because I fear it. 

There is so much going on in my life that I barely have a chance to think past the moment, but when I do, there are things that weigh pretty goddamm heavy on me.

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Right now I’ve been very preoccupied with Gavin.  He’s been staying with his Grandparents since October of last year.  It’s worked out really well for the part.  Gavin’s in a safe and loving place.  Our house is no longer filled with his destructive rage.

That’s good for all involved.

Having said that, right now we have no idea what we are going to do when school let’s out for the summer.

I don’t know how we are going to work this out.

He can’t come home, the trauma he’s inflicted on everyone, especially Lizze (his main target) is far to extensive. 

Having said that, even if we wanted to bring him home,  we couldn’t.  Gavin has Reactive Attachment disorder and one of his manipulative weapons of choice is the tantrum. We’re talking extremely loud, long, violent and self-injurous fits of rage. 

These should not be confused with your run of the mill Autism related meltdown. These are two very, very different things. 

Anyway, he very prone to these fits of rage when he’s at home because we have to run a tight ship in order to keep everyone safe.  Gavin doesn’t like restrictions and so he rages,  in order to try and get us to back down. 

On its own, this would be bad enough. 

However, since this whole autonomic dysfunction/crisis thing came to light last year, things have become much more serious. 

Basically, if Gavin throws a tantrum, it could trigger a life threatening autonomic crisis (as it has in the past). We can’t afford to take that chance. Every time he goes into a crisis, there’s no way to know if he’s going to ever pull out of it. 

When he’s at his Grandparents house, things are more relaxed and Gavin doesn’t have to interact with others the way he would at home. 

His stay hasn’t been tantrum free but they are much fewer than if he were at home. 

Anyway, because of his fragile health, we can’t send him to a summer camp or anything like that either.  He basically, can’t do much, physically, anymore without triggering more autonomic problems. 

I fear that coming home may be our only option this summer.  That thought keeps me up at night because I know what bringing him home would do to my family and so does Gavin doctors and our family therapist.

We will do our best to work something out, in order to avoid this but nothings for sure and that’s scary.

If you’ve ever dealt with a reactive attachment kid, you are likely all too familiar with the damage they can inflict on a family. 

We’re stuck in a no win situation.  This is the very definition of damned if we do and damned if we don’t. 

His mental health issues limit what we can do for his physical health issues. His physical health issues have kept him out of treatment centers because he’s far to fragile and no one is equipped to deal with the physical health side of things.

Our options are very, very limited.  There is only one thing that I know for sure. 

He simply can’t come home.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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Apr 17 2013

Varying degrees of bad news

Categories:

Gavin, Immunology

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April 17, 2013

Today’s been one of those days that just keeps on giving. In some cases that would be a welcomed event. However, in this case, I don’t want what today’s been throwing at us.

We received a call from Gavin’s immunologist this afternoon. 

These calls are never good.

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Typically, if she calls us out of the blue, it means that something is wrong.  Today was no exception.

The reason she was calling was to let us know about Gavin’s lab work from Monday. This past Monday was Gavin’s latest IVIG Infusion.  This infusion provides him with an immune system, since his own is defective.

Before every infusion, they do lab work to check his immunoglobulin levels.  This let’s us know if the dosage is right.  If they are too low, he needs his dosage increased.

Apparently, this time his levels were too low. 

This isn’t necessarily a huge deal but it does further complicate things.  The other issue is that not only is his IgG and IgM levels low but also his IgA. This isn’t entirely new news because we’ve known about the IgG and IgM.

What is new, at least as far as I know, is his IgA levels. 

What does this mean? To be honest, I’m not entirely sure. For starters, it means that we have to bump up his IVIG infusion dosage.  This will likely translate into a longer infusion as well. We’re already clocking in at 4 to 5 hours a pop right now.  :-(

What worries me is the why. Why is this happening? Is this a new symptom or a worsening of his already compromised immune system?

I also learned that this may very well be tired to the autonomic dysfunction. 

Dr. Wasserbauer explained that if Gavin’s metabolic rate is accelerated (think increased heart rate etc), he going to burn through the donor antibodies much too quickly.

We will be slowly bumping up his IVIG dosage, beginning with his May 8th infusion.  We’re going to bump is up by 5mg at a time because we want to avoid any stress on Gavin’s body. His new dosage will be 25mg and it will increase over time,  until we get to a point that Dr.  Wasserbauer is comfortable with his immunoglobulin levels…

In all reality, we’ve been dealt far worse blows in the past. This is earth shattering news but I’d be lying to you if I said this news didn’t infuse even more concern into our lives.

I really truly fear for Gavin’s future.

While I’m never above trying to remain positive, unfortunately, we must deal with reality. The reality is that Gavin is likely to only get worse as time goes on. We’re never going to receive an out of the blue phone call telling us that Gavin has stabilized and that we have nothing to worry about anymore.

In the last few years, we have only ever really received varying degrees of bad news.

I wish things would be different but sadly this


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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Apr 10 2013

Is this “normal” or something to worry about?

Categories:

Akron Children's Hospital, Allergies, Gavin, Immunology

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April 10, 2013

I received a call from Summit Academy this morning.  Gavin is in the office, in tears because his eyes hurt so bad.  The secretary told me that Gavin’s eyes began hurting and we’re really itchy.  Now they were extremely read and he was calm but upset.

I had to go bring him home. 

Lizze was sleeping because she’s not feeling well and I had to wake her up. 

Because of the RAD and the dynamic that their relationship has taken on as a result, I needed to prepare her for him to come home.  She was 100% on board and told me to bring him home quickly so she could give him some benadryl and hopefully relieve his distress.

At this point, Gavin is medicated and sleeping in his bed.

When I got to him at school, he was sitting just outside the office, sobbing. 

His eyes were very, very red.  Around his eyes almost looked bruised from him rubbing them.  Although, it didn’t show up well in the picture. 

Here’s my concern, rational or not.

He’s never had this type of reaction before.  He’s on allergy meds already but I don’t ever remember anything like this before and neither does Gavin. 

I have a million things running though my head right now. 

Is this just allergies, albeit new ones? Is this something else? Should we be concerned? Is this a sign that something is changing within him?

I may sound paranoid but when you have a child like Gavin, that charts new territory with his life threatening and  bizarrely rare health issues, there’s no way to know for sure.

Most of what we know about him was discovered somewhat by accident and because of something random thing that showed up out of nowhere.

Call me paranoid but I’m paranoid for good reason.

We are going to call his allergist/immunologist today and find out what she wants us to do.  All we can do is have him seen so that we can either discover the new chapter in his life or put our fears to rest because it’s just allergies.

My body was not meant to handle this amount of stress. :-(

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This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

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Apr 08 2013

Helpless

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Gavin, My thoughts

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April 8, 2013

Lizze and I brought the boys to a local park today and met up with my Mom and Gavin. The boys hung out with Grandma and Gavin while Lizze and I walked about 2 miles. Afterwards, I spent some time talking with Gavin. It’s so sad because he can’t have more intelligent conversations anymore. I know that sounds mean, but I most certainly don’t mean that as a negative towards him at all. The problem is that cognitively, he’s just not there anymore. The only thing he converses about is Sonic the Hedgehog. His conversation skills have just declined to that point. I truly, truly have no idea what to do or where to go. I’ve talked about needing a Dr. House before and I feel like that would be our best bet. Unfortunately, he’s not real and that is of no help to us. I don’t know how many of you out there, know what it’s like to watch your child slipping away. Even though you do everything that can possibly be done and more, it’s just not enough. It’s an indescribable feeling that I wouldn’t wish on anyone, ever. While we were at the playground this afternoon, my Mom kept Gavin as calm as possible but his heart rate hit the highest is ever been recorded at, almost 170 bpm.

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The most he did was sit on a swing and walk around. That was all it took to throw him out of whack and potentially but his life in danger. I hate the fact that he can’t just be a kid. I hate the fact that we have to rob him of his childhood, just to keep him alive. What kind of life is that? I have to call the Cleveland Clinic in the morning and get Gavin in to the neurologist again. We need a better plan and we need one now. I will also call Akron Children’s Hospital again and follow up on the impossible to get into see, mitochondrial specialist. He happens to be the best in the world and so he’s impossible to get an appointment with. Time to give new meaning to squeaky wheel gets the grease. At the same time as all of this is going down, Lizze is having some issues that have earned her a rushed appointment to the Cleveland Clinic as well. She has 3 appointments there in next week or so but that’s her story to tell or at the very least, another post. Right now, I don’t know what to feel. Right now, I don’t know what to do. When life gets all up in your face like this, it’s extremely difficult to focus on anything else. I’m trying to focus on the other two boys and make them a priority, while at the same time, trying to find work, not lose our house or our car and try and keep up with as many of you other obligations as possible. Things are really bad right now and I feel like if I take my focus away from what’s going on with Gavin, Lizze, Elliott and Emmett, everything is going to fall apart or worse. It’s not as easy as just trying to find balance. I’m basically have 10 balls that need to be juggled. I can only juggle 3 balls at a time and so it’s like I have to rotate the other balls in when I can. Unfortunately, as soon as I put any of the balls down, even briefly, things begin to rapidly go down hill. Of those 10 balls that need juggled, 4 of them are the most important and really can’t be rotated out. It’s a lose lose situation, anyway you look at it and it sucks. I don’t know if there exists a word that can describe how I feel. If I had to pick one word that I know of, it would have to be helpless. I feel incredibly helpless.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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