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

Tag Archive: Gavin

May 13 2013

Confessions of a depressed #Autism Dad: I’ve been better

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Confessions

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May 13, 2013

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This has been a really challenging week for me personally. I did quite a bit of driving and sat through my share of appointments, including Gavin’s IVIG infusion for May.

There’s a lot going on with Lizze right now and honestly, she’s not in a good place. 

For me right now though, I just can’t stop worrying about Gavin. I mean, I’m worried about Lizze as well but we know what we are dealing with and have a plan for addressing it. 

With Gavin there’s just nothing but the great unknown.

At the very least, we know for sure that he’s not doing well.  We know for sure that he’s continually getting worse. We also know that his immune system is becoming more compromised and his neurological dysfunction is impacting him more and more.

I never brought this up before but, I’ve been noticing that Gavin’s beginning to walk funny.

I don’t mean funny as in ha ha. I mean funny as in something’s wrong.

Gavin’s walking like he can’t bend his knees. I don’t know how else to describe it.  He’s never been a graceful gazelle but now he’s really stiff in his movements.

When it comes to Gavin and everything he’s going through, I don’t know how not to worry. I feel like we are battling against time and have been on the losing end of that for a very long time.

This is absolutely taking its toll on me. 

I’m not sleeping very well at night and when I do, I’m having nightmares, really, really messed up nightmares.

It’s no secret that I’m depressed and truthfully, I’ve seen better days. 

I’m finding myself more easily frustrated and lacking in energy. I’m tired, worn out…..no, more like burnt out.

Anyways, I just wanted to share…….


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May 11 2013

Speech regression is frustrating for everyone

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Gavin

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May 11, 2013

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After spending the last 2 days with Gavin, it’s very clear that his speech is continuing to regress. I don’t know how many times he’s gone to talk to me and I swear that I can’t for the life of me figure out what he’s trying to say. 

When you don’t live with someone everyday, it’s easier to notice things like this. 

Even when Gavin was living at home, we noticed this but having him gone for so long and not listening to him speak everyday, makes the changes all that more noticeable.

Right now it doesn’t help that he’s either dealing with allergies or another sinus infection because he’s really nasally. 

Gavin doesn’t blow his nose very well and so, it’s kinda hard to determine if what’s inside is something we need to worry about.  He’s had a long history of chronic sinusitis as a result of the the whole immunodeficiency but since receiving the IVIG, this really shouldn’t be happening.

Hopefully, it’s just allergies.

Lord knows it’s the time of year for them.  We’ll just have to kinda keep an eye on him.

Regardless, the fact remains that Gavin’s speech is regressing.  It’s frustrating for him because he has to always repeat himself and it’s frustrating for those around him because they have to ask him to repeat himself. 

I know how frustrating it is for Gavin so as often as I can I just sorta smile and try to actively listen, even though I haven’t a clue what he’s talking about. 

Fortunately, most of the time what he’s trying to tell us isn’t much more then him talking about Sonic the Hedgehog. If it sounds really important, well, I’ll have to press him to repeat himself.  However, I try to reserve those requests for times that it seems really important……


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May 08 2013

Today’s IVIG infusion (05/08/2013): It was dicey but successful

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Akron Children’s Hospital, Antibody Infusion, Gavin, My thoughts

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May 8, 2013

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Thanks to the amazing work of Akron Children’s Hospital, Gavin’s made it through another IVIG infusion, successfully. 

Things got a bit dicey a few times but nothing came of it. 

He actually fell asleep, which is unheard of for him. Our nurse said that he fell asleep once before but I wasn’t there that time.

Overall, Gavin tolerated the infusion and increased dosage pretty well. 

He is experiencing side effects for the first time is as long as I can remember.  He has a headache and the chills but these are pretty typical for kids on IVIG.  Perhaps it was the increased dose that lead to the return of these side effects but they aren’t anything to be concerned about.

At one point, Garvin began sweating and the back of his pant legs were wet from sweat.  This was really concerning because, it’s physiologically impossible for Garvin to sweat and that’s a part of the autonomic dysfunction.

The only time he’s ever sweat, in his entire life is when he’s in a crisis. 

Needless to say, the nurse and in were a bit nervous. 

Fortunately, nothing came of it, at least yet.  On the ride home, his heart rate was still in the 140′s but he seemed to be doing okay.

I dropped him off at my parents house, where he will get some rest until Lizze’s Mom picks him up after work. 

Part of me want to keep him home from school tomorrow because this clearly took a toll on his body but we’ll have to see how he’s doing tonight and in the morning.  Of he’s still feeling okay, there’s no reason to keep him home. 

The entire process completed around 2pm this afternoon and didn’t take as long as I thought it was going to. 

I met with Dr. Wasserbauer, but that’s for another post, as soon as I catch my breath.  It’s been a really long day and right now, Gavin’s doing well and that’s what matters. 

I want to thank Akron Children’s Hospital and the outpatient infusion lab for taking such h good care of our precious cargo.  :-)


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

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May 08 2013

Today’s IVIG infusion @AkronChildrens (05/08/2013): Infusion Underway

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Akron Children’s Hospital, Antibody Infusion

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May 8, 2013

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Gavin is currently being infused with IVIG as I write this.  Today’s dosage increase takes us to 25mg and a slightly longer infusion time then previously.

Gavin’s doing really well and seems to be tolerating things also. 

The only problem we’ve encountered, aside from traffic this morning on the way up, is video games.  Gavin, on a few occasions, got so worked up over the game he was playing, that his heart rate shot up to almost 180/bpm.

He began shaking and then his heart rate dropped to 70/bpm.

We put the games down and laid very still and relaxed. 

Thankfully, he balanced out and nothing happened.  It could have easily gone another direction, as it has before. 

Gavin didn’t resist taking a break and I think that made a difference because he was able to calm down quicker.  Great choice Gavin.  :-)

I believe we still have an hour or so and he’ll get his IV flush.  It actually went quicker than I thought it would.  The process start to finish will have run between 5 and 6 hours, maybe a bit less. We got here about 9:20am and should be done between 2pm and 3pm.
Something like that anyways. 

We are expecting Dr. Wasserbauer, his immunologist, in a few minutes and we will get to catch up on what’s going on. 

The whole staff here, including Dr. Wassurbower,  are absolutely amazing.  We are so blessed to have them looking after our kids. 

I look forward to the day that I can give back to Akron Children’s Hospital for all they have done for my family. 


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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May 07 2013

Reactive Attachment Disorder: It just never ends

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Reactive Attachment Disorder

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May 7, 2013

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If you’re familiar at all with kids with Reactive Attachment Disorder, what follows with likely make a great deal of sense to you. 

As you know, Gavin’s been living with his grandparents for awhile now. 

While Gavin was living at home, he was too aggressive, abusive and violent.  While these were all choices he made, he’s not a bad kid.  He’s a kid with very serious mental health problems that not his fault.

Anyway, one of the things that kids with RAD do is create chaos within the home.

Gavin used to do things just so that he could sit back and watch Elliott and Emmett fight.  I know how that sounds and I know that some people will say, that’s what brothers do. 

I assure you that this was anything but innocent, brotherly behavior. 

Even after he’s left the house we are once again experiencing problems.  This time it’s being done from a distance but still carrying quite a wallop.

While Gavin lives at his grandparents, he lives by their rules.  We have set in place some basic guidelines but the day to day things fall to them.  That only makes sense.  We can micromanage things and right now, as long as certain things are done (related to his health problems) the rest isn’t of major concern to us. 

Gavin seems to get toys much more often than he would if he were living at home. I suppose you could say that he’s being spoiled but again, it’s not that big of a deal. 

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The problem is that Gavin, when he sees his little brothers is saying things like, “Grandma bought me this or guess what grandma bought me.”

Essentially, he’s rubbing it in their faces. 

Now this could be completely innocent, but I don’t believe that to be the case.  This is exactly the kind of thing that he would do at home. 

He’s been told to stop doing this but he’s continuing to do this and it’s now caused quite a bit of animosity between him and his brothers. 

Elliott is especially angry and hurt.

It’s bad enough that because everyone I’d helping so much with Gavin, the other boys get left out. This is becoming more and more of a problem..

They miss their grandparents and they even miss Gavin. 

Everyone involved is doing the very best they can in a difficult situation.  Neither of parents are intentionally ignoring the boys.  It’s just that they can only don’t much and they know how important it is to keep Gavin out of the house. 

It’s become a tradeoff of sorts.  :-(

I just spoke with Gavin about this yesterday because it came up once again. 

Even absent of his presence at home, he still manages to create chaos.   


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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May 06 2013

Operation Hope: Gavin’s not coming home this week

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Operation Hope

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May 6, 2013

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Originally, Gavin was supposed to come home tonight and stay through part of the week.  Lizze’s parents were originally supposed to be going out of town for something.

However, it looks as though plans have changed and they won’t be going. 

This means that Gavin doesn’t have to come home after all.  While I may sound like a terrible parent for being happy about that, it’s certainly not because I don’t love him or want to see him. 

With Gavin, comes lots of behavioral problems, especially when he’s at home. He’s very aggressive and has explosive rages and lots of tantrums when he doesn’t get his way. 

He’s a very destabilizing force when he’s at home. 

So yes, I’m happy that we won’t have to endure that.  However, at the same time, I’m reminded of how sad this whole thing makes me feel. 

Gavin’s quiet happy where he is right now and doesn’t want to come home so I try not to feel too guilty.  He’s doing better where he’s at and while he’s beginning to have more and more meltdowns at his grandparents house, it’s nowhere near what it would be if he was home.

At this point, I’m going to call this a victory, albeit a tainted one. 

image


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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May 04 2013

One of those lose lose situations

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My thoughts

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May 4, 2013

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When you have a child like Gavin, life is exceptionally challenging.  Any one of his individual challenges would be difficult on most families.  The combination of his physical and mental health issues makes things……um…what’s another word for impossible?

Even after having moved Gavin to his grandparents life has gotten any less challenges. 

What a lot of people don’t understand is that when you send a child away because of safety issues, like we did, you often times simply trade one problem for another one.

I know that seems counterintuitive but it’s so very true. 

Here’s a fee examples of what I mean. 

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Since moving Gavin out of our house, his health issues have been infinitely more difficult to manage.  Without the first hand knowledge of his symptoms, we never know for sure what’s going on and how to address it. 

Because of the time and energy involved in caring for Gavin, we have literally tapped out the last of our help. Between my parents and Lizze’s parents, someone always has Gavin. The ones that don’t have him at any given time, are usually pretty spent and aren’t able to offer much in the way of help outside of what they are already doing. 

I can’t blame them.  I mean, Gavin can be absolutely exhausting, even when he’s doing okay. 

The major downside is that the other boys seem to get cut off from their grandparents because Gavin takes up so much of their time and energy. 

This is really hard on the boys because they simply don’t understand.

This also translated into almost no breaks for Lizze and I because there’s nowhere for the boys to go.  We won’t send them to a strangers house and my siblings are all hands off aunts and uncles. 

We can’t even send Gavin anywhere else because of how complex he is.  With his medical issues, no one wants the liability and if we could get him someplace, they aren’t qualified to deal with his life threatening health issues that can literally pop up at any moment and often without any warning.

This is really one of those lose lose situations that come along with being a special needs parent.


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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