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

Category Archive: Unpleasant Truth

Jul 17 2011

Autism, sacrifice and meeting the ever growing needs

My kids, Emmett and Gavin in particular have ever growing needs. Doctors visits and therapies, just to name a few. Much of the time I’m able to meet those needs and others times I’m not.  Typically, I try to take it a week at a time as that’s the best I can do right now. Currently, I have arrived at a place where I just can’t keep up with the demand. Gavin’s recent hospital stays and the van breaking down have disrupted our rather delicate financial balance. At times like these I have to find other ways to make it another week.

The boys have a week filled with therapies and at least one trip to Akron Children’s Hospital. So the agenda for today is to figure out how to make it another week until my next check. Here is what I have decided to do. I have an XBOX 360 with Kinect bundle and about 8 games. Later on today, after Lizze wakes up, I’m going to take it to Gamestop and trade or actually more like sell it to them.

In all honesty, this doesn’t excite me to do this, as I LOVE my XBOX. However, I LOVE my kids more and so I’m glad that I had it to sell. It won’t fetch anywhere close to what it’s actually worth (as Gamestop is a rip off) but it will put gas in the van so we can get the kids to their appointments this week.

I share this because I want people to understand what types of sacrifices come into play when your a special needs family. I know many of you out there have had to make similar sacrifices. To most people, maybe giving up an XBOX doesn’t seem like a huge deal but when it’s really the only luxury you have left, it hurts a little more.

On the plus side, we live to fight another week and that is well worth the cost :-)

 

 

Permanent link to this article: http://lostandtired.com/2011/07/17/autism-sacrifice-and-meeting-the-ever-growing-needs/

Jul 13 2011

Autism and Agression

We are having major issues with aggression. Emmett is becoming much more aggressive and Lizze, Gavin and Elliott are paying a very heavy price. Not sure if the pictures so the claw marks on Gavin’s neck and Elliott’s back. Elliott was also bitten on his left……um….butt cheek. Obviously, we don’t have pictures of that. However, the bite was pretty bad, luckily it didn’t actually break the skin but it’s badly bruised.

Lizze is also being assaulted as well. She’s getting smacked and hit on a fairly regular basis. She has scratches on her face and neck. I don’t know how to address these aggressive behaviors. Part of the problem with Emmett lies in his frustration with communication or rather lack of communication.

This is one of the less than positive aspects of Autism that doesn’t get talked about enough. Look, discussing these behaviors, admitting they are happening and acknowledging that they are a problem is not a reflection on our children. Recognizing that the behavior is the problem and not the child is difficult but necessary if we are to educate the pubLiz and help them to be more Autism Aware.

The important thing to remember is that admitting this is a problem doesn’t mean we don’t love our kids. I would argue that it means we love them enough to be able to separate them from the behavior.

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- Lost and Tired

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Permanent link to this article: http://lostandtired.com/2011/07/13/autism-and-agression/

Jun 12 2011

I’m losing my mind

I love my family unconditionally. I truly mean that. Sometimes, though everything is just to much. As the only “typical” person in the house, I find myself, at times, the “odd man out”. I’m a gifted communicated. I can talk to anyone about anything and not have any problems. However, when it comes to my family, I struggle to the point of utter frustration. Everyone, including Lizze,  requires a different approach when it comes to communication.

This is really the only “issue” Lizze and I ever really have. Considering everything we have been through over the last 10 year’s, I’m actually quite proud of that. The frustration for me is that I can never just “talk” to anyone in this house. Everyone requires a concerted effort on my part to simply get my point across. Think of it like this. Everyone in the house is on a different “wave length”. Meaning that everyone has a unique way of communicating. I find myself constantly having to switch back and forth through out the day. It’s like trying to navigate a conversational mine field. One filled with misunderstandings and misinterpretations. It’s frustrating to say the least.

One the flip side, it must be frustrating for them as well. Being able to effectively and efficiently communicate is so important in everyday life. When you struggle with that it has to be extremely frustrating. Everyone does their best and right now that’s all I can ask. We will just continue to find ways to bridge the gap.

- Lost and Tired

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Permanent link to this article: http://lostandtired.com/2011/06/12/im-losing-my-mind/

Jun 09 2011

Busted!!!!!

So this morning Gavin was getting ready to go to OT….oh yeah Gavin has started OT again (I’ll post about that later). Anyway, Elliott came down stairs and told me that “Gavin needs to learn how to use mouthwash the right way”. I told Elliott Gavin doesn’t use mouth wash. Elliott said, “yes he is daddy and he spit it all over the sink”.  Let’s pause for just a minute to bring everyone up to speed. Gavin has struggled with PICA for many years. One of his most favorite things to ingest was mouthwash. We discovered this about 2 years ago. He had ingested a bottle of kids mouthwash. After a call to poison control and a trip to the ER we have removed this stuff from the house and have had to be very careful with our Listerine. Gavin has a laundry list of things he had consumed but for the purposes of this post mouthwash is the only one that is relevant.

So back to this morning. I called Gavin downstairs to question him about this. He immediately got upset, which tells me that I caught him doing something he shouldn’t have been doing. Turns out that he had received a bottle of mouthwash while at Akron Children’s Hospital last week. He brought it home and hid it in his room so we wouldn’t know he had it. Now, we had this conversation with Akron prior to his admission. We explained that he CANNOT have things like this, mouthwash in particular because he abuses it. Apparently, that conversation feel on deaf ears OR Gavin took it while he was there without their knowledge. Either way it presented itself this morning. Most of the mouthwash is gone but Gavin claims that he didn’t drink any of it. He claims he was using it for it’s intended purpose. Whether he was or wasn’t isn’t the point. The problem is that he deliberately hid this from us.  My guess is that he wasn’t drinking it this time because there is still some left. If he had been drinking this then based on past experience, it would most likely be gone.

The question now becomes, what do we do? This doesn’t help us to trust Gavin going forward. He knew what he was doing was wrong, hence the fact that he was hiding it from us. He just managed to slip up this morning and Elliott caught him. I’m at a loss here because there needs to be consequences for this but nothing seems to work. We met with Dr. R shortly after Gavin’s release for the psych unit to follow up and were discussing discipline. He has NO issues with any of the consequences we provide in response to Gavin’s behaviors. The only issue is that he doesn’t think anything will work. He says ( and correctly so), that kids like Gavin with bipolar type mood disorders, will stare down the barrel of a gun and never blink. He said, Gavin will butt heads with us to the end and go down knowing he didn’t blink. Well, something to that effect anyway…..you get the point.  What do we do now? No one has the answers for us. However, the best advice we have received at this point from Dr. R and Dr. Patti both is that our time and energies are probably better spent doing damage control with Elliott and Emmett to limit the impact Gavin has on them. While they’re right, it’s not what we wanted to hear. I want to find something that works on Gavin and I WANT to hold him accountable for these behaviors. This is why we have to pursue ideas conceived by thinking “outside the box”. I actually created a forum on the Autism Support page for just this topic.

I’m VERY open to ideas here. At this point the farther “outside the box” they are the better chance they probably have of being effective.

Permanent link to this article: http://lostandtired.com/2011/06/09/busted/

Jun 05 2011

Okay, glass elevators make me nervous

Okay, I’ll be really honest, hieghts make me a bit nervous. Kinda ironic as my previous career was a firefighter/paramedic. Having to climb tall ladders was part of the job but it’s much different if someone’s life depends on you climbing that ladder.

The psych unit at Akron Children’s  is on the eighth floor and the problem I have with that is that the elevator is glass or open. Meaning you see eveything. I’m not super fond of that evevator trip. It does kinda freak me a out a little because when you actually see the ground coming up fast it feels like the elevator isn’t slowing down fast enough. I know….pretty sad..right? Sure, but this video makes it look MUCH slower then it actually is….I swear.

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Permanent link to this article: http://lostandtired.com/2011/06/05/okay-glass-elevators-make-me-nervous/

Jun 04 2011

Am I the only one that sees a problem here?

When a child, like Gavin, is sent to a psych unit it’s usually for good reason. It’s a heartbreaking task for any parent. It’s done it for many reasons but there are two common ones. One the child needs to get help that can’t be provided at the home (maybe the child is to violent or dangerous and you have to worry about safety as well). Two, it’s also used as a deterrent to negative behavior. For example, if the child continues to hurt themselves they will go back. I realize that there are many more reasons for needing to send a child to an place like this. These were just two examples.

After speaking with the case manager yesterday, she said Gavin is having a blast.. She said it’s very clear that he’s having fun. Am I the only one to see this as a problem? He was sent there as a result of violent and inappropriate bevavior. This is supposed to be a learning experience for him. He’s not supposed to be viewing this like a bloody vacation.  I told her that I feel that if he’s having a good time it no longer serves a purpose. No child should want to be locked up in a place like this…right?

At the risk of sounding like a bad parent, this needs to be a negative experience with a positive impact….if that makes sense. If you discipline a child for an inappropriate behavior the consequence needs to be undesirable to the child in order for it to serve a purpose and have the desired impact. If the consequence is something the child enjoys then what’s the point?

That’s what my problem with this whole thing right now. I don’t want him to be enjoying himself. I want him to get help and at the same time learn a lesson. I don’t want him to want to be there because it defeats the purpose. I want this to be something he NEVER wants to do again. No one is sure why he’s “enjoying” himself so much but he is. The only other option we have left to do is not visit him. We couldn’t make it to visitation last night and he called us angry and upset. We talked for a bit and I told him that when he is there we won’t be able to visit him very often. I explained that if he wants to see us everyday that he needs follow the rules and let them help him so he can come home and make better choices. This was not an easy conversation to have but I truly think it’s whats best. When we or anyone else goes up to visit him he becomes the center of attention and everyone feels “bad” for Gavin. The problem is that we are sending the wrong message. By not seeing him every day he finds him self in a situation he doesn’t like. So in the future perhaps Gavin will think twice before he repeats this violent behavior.

It’s one of those “tough love” kinda things. If Gavin continues down this path it will be jail time he has to worry about…not oatmeal. We love him and want him to have a future. If we don’t curb this behavior now then that future looks bleak.  You have to remember “outside the box”.

 

Permanent link to this article: http://lostandtired.com/2011/06/04/am-i-the-only-one-that-sees-a-problem-here/

Jun 03 2011

Outside the box

Why is it that so many people have such a hard time understanding the need for “outside the box” thinking when it comes to special needs kids. Autistic children in particular by their very nature live life “outside the box” and I don’t mean that in a bad way. So it would stand to reason that in dealing with disciple or behavioral issues you may have to think “outside the box” as well. I can’t get over all the people this week that just don’t get why we HAVE to handle Gavin’s behaviors in a certain way. Gavin is an extremely rare child with extremely rare challenges (schizoaffective disorder alone puts him at 1 in 100,000 kids) and that doesn’t factor in anything else.

I explained that Lizze and I had to divide and conqour yesterday in order to get everything done we needed to. I took care of Emmett’s needs yesterday and Lizze met with the social worker in the psych unit at Akron Children’s Hospital. This guy just could not grasp the concept of “outside the box” thinking or parenting for that matter. He did not like that fact that we hold Gavin accountable when Elliott or Emmett self-injures as a result of Gavin’s self-injurious behavior. We have been trying to deter this inappropriate behavior for at least the last year or so. Since fall of last year it has gotten much worse. If you read back a few posts you will see what I’m talking about. Gavin’s brothers really look up to him. They want to be just like him and so they model his behavior both good and bad.

Gavin chooses to self-injure as a means of manipulation, maybe not ALL the time but most of the time. The worst part is he does this in front of his brothers. He has in the past, on MANY occasions, demonstrated that these are “willful” acts. This past Sunday, Gavin had a meltdown and scratched his face open and had blood dripping down his cheeks. He did this in front of Elliott (who was horrified). It happened way to fast and I couldn’t get Gavin to his room fast enough. The following day, Elliott was frustrated while getting ready for school and started scratching his face up just like Gavin did night before. At the same time he says “why am I such a stupid jerk, I should be dead”. As a parent how would you react to your 5 year old little boy doing that? That’s a learned behavior and isn’t Elliott’s natural response. This is why Gavin is held accountable along with Elliott. So long as he continues to self-injure in front of his brothers he will continue to be held accountable. As soon as he stops so does the accountability. We have TRIED anything and everything we can think of to stop this violent, manipulative behavior from Gavin but NOTHING works. Our hope is that having to eat oatmeal (in place of his next meal, which is his punishment) every time this happens will encourage Gavin to make “better” choices in the future.

You have to keep in mind that Gavin does have control over this behavior and these are willful acts. If he had no control over this then it would be a MUCH different story…still a problem..but a different story.  I spoke with Akron this morning and they said that Gavin is already trying to push buttons. They said they can see him just sitting there observing the staff. When someone tells him “no”, he waits till their gone and targets a staff member that he feels is most likely to give him what he wants. The point is that they are FINALLY seeing what we have BEEN trying to get them to understand and that is: Gavin IS NOT a typical Autistic child.

With some children, you have to be……creative. You have to think “outside the box” in your dealings with them. While it may seem unconventional to some, I assure you,  it serves a vital role in preparing our children for the future. You simply must be open minded to see that and unfortunately, many people simply aren’t, the social worker at Akron Children’s being one of them.

Permanent link to this article: http://lostandtired.com/2011/06/03/outside-the-box/

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