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

Tag Archive: person

Mar 22 2013

I want to talk about the Person First Language

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By now, I would imagine that we have all heard about the person first language. Basically, the premise of this is that you put the person before the disorder.

As I understand it, addressing someone in the person first language would go something like this.  This is my son Johnny, he has Autism.
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The point is that some people feel that if you were to say something like, This is my son Johnny  and he’s autistic, or This is my Autistic son Johnny, that you are identifying them by the disorder and not who they are as a person.

To me, I’ve always felt this was really silly and honestly, kinda petty.

If you speak to an adult with Autism, more often than not they prefer to be called Autistic.

So I suppose the question I have is this.

Who’s the person first language really benefiting?

Think about it, if most adults with Autism, prefer to be called Autistic, than why the need for the person first language in the first place?

There’s always going to be someone who prefers a different terminology but does that mean that we have to make a huge deal out of the semantics of Autism?

Here’s my thoughts on this issue.

For starters, I really think the main reason we see people push for the person first language is because wenot they are more comfortable using it, especially when referring to our own children.

I know that some people get really upset when they hear a child referred to as Autistic. It seems as though they feel that using the word Autistic is defining the person. They would rather hear so and so has autism or so and so is a person living with Autism instead.

I really think this has more to do with them and less to do with the person on the spectrum.

In my opinion, the person first language, while good intentioned, does an injustice to the Autism community.

When we put so much effort into making sure that the person comes before the disorder, we give the impression that there’s something wrong with being Autistic. In a day and age when the community is asking for acceptance and understanding, what message is the person first language sending the rest of the world?

Instead of doing what makes us more comfortable with Autism, why not let those who are actually Autistic be our guide?

Personally, I use the words interchangeably because they both mean the same thing to me. Depending on the context of the conversation, I might say my kids are Autistic. I might also sayI have three boys with Autism.

Having said that, I hardly ever use the word Autism or autistic in real life, unless I’m speaking about the condition.

When I introduce my kids, I say these are my kids, Gavin, Elliott and Emmett.

I just feel like we spend way too much time worrying about things that in the big picture, are that important. When you look back on your life are you going to be like, yeah, I feel great because I made sure that my son or daughter was never called Autistic? I would think that when you look back on your life, you would want to know that you did everything you could to give your child the brightest future possible.

When I look back on my life, I want to know that did everything I could for my kids and I did the things that really truly mattered.

Look, I respect the right of anyone to think and do what they feel is right. I don’t have to agree with you to give you that respect. I just want to create a dialog and see what everyone thinks.


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Permanent link to this article: http://lostandtired.com/2013/03/22/i-want-to-talk-about-the-person-first-language/

Dec 04 2012

Operation Hope: Building a support team

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On Friday, we have our very first, official wraparound meeting.  This meeting will take place at Gavin‘s school and involve teachers, family, doctors and therapists.

Basically, this will be about identifying our needs as well as ways that they can help support us.

I’m not sure what can really help accomplished here, since what is really needed is Gavin in residential care.

Having said that, it’s a process and one that is required in order to proceed. 

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I’m going to have to speak with the school about who we want at the meeting and who we don’t want involved.  Right now, I have my concerns about one person and I contemplating removing this person from the team

That may seem counter productive but in the end, it’s our team and our choice.

I fully intend to exercise that choice

I’m not sure that anyone aside from Gavin‘s teachers etc, will be able to make it.  Emmett will likely be at my parents house and with Lizze grandfather passing away, her side will likely be tied up with that. 

For the most part, our families are all on the same page so that won’t he a huge deal. 

Dr. Patti may be out of town as well.

Actually, the more I think about this, more it seems like we should postpone the meeting until a later date.  What’s the point if no one will be there?

Permanent link to this article: http://lostandtired.com/2012/12/04/operation-hope-building-a-support-team/

Jun 09 2012

Saturday Soapbox: Smoking

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I climbed on my soapbox last week to vent about parents that don’t put their kids in carseats. You folks responded really well to that and a good dialog was started.

I was thinking that I could do this more often.

So I have decided to have Saturday Soapbox. Basically,  I’ll voice my opinion about something that bothers me and the you all discuss your thoughts and and feelings on the issue.

For today’s Saturday Soapbox,  I’m going to talk about smoking with your kids in the car.

This has been a pet peeve of mine for as long as I can remember. I’ve never understood why someone would knowingly put their child at risk for things like,  asthma,  cancer or countless other illnesses.

Personally,  I don’t understand smoking in general. I know that it’s an addiction and a powerful one at that but it says Causes Cancer,  right on the package. A person is well within their rights to smoke and likely loose many years off their lives but forcing your kids to breath that same,  unfiltered,  toxic air is simply not right. You have made the  choice to smoke,  your kids haven’t.

It drives me crazy to see someone driving around,  with their windows up and chain smoking.  Especially when their children are in the back seat.

I’ve seen little kids coughing and Mom or Dad keep puffing away,  completely oblivious to what they are putting their kids through. At the very least,  roll the friggin Window down.  For the love of God,  think about your innocent kids,  choking in the back seat.  It’s bad enough that they aren’t in a carseat but now they can’t breathe either.

I don’t understand why this isn’t considered child endangerment.

We know it’s dangerous for both the person behind the filter and for the person in front of the filter.  It’s not like these are just my opinions,  these are undisputed,  scientific facts.

Even Big Tobacco knows that their product kills. It really doesn’t take a rocket scientist to realize that you are directly affecting your child’s health and potentially even their future.

 

Please,  please,  please,  if you must smoke do so away from your kids. Please don’t smoke in the house or car,  especially if it’s in the presence of your children. You have the right to do this to yourself and I respect that,  just please don’t make that same decision for your children.

Most of my siblings smoke.  It doesn’t make them bad people. Like you,  they are good people who are making not so good choices.

Please,  if you’re not going to care enough about yourself to either quit smoking on your own or get to help to do so,  at least think about what your unfiltered,  secondhand smoke is doing to your precious children.

Permanent link to this article: http://lostandtired.com/2012/06/09/saturday-soapbox-smoking/

May 29 2012

10 Things You Don’t Know About Me

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I thought it would be a growing experience for me to share with you 10 things about myself that I don’t share with many people. Some of these things are very personal  and I never talk about.  I’m trying to grow as a person and so I think that by sharing these things,  maybe I can do just that. This list is in no particular order of importance or significance to me.

10 Thing’s You Don’t Known About Me

1) I’m terrified of the dentist and haven’t seen one in over 10 years.  I take good care of my teeth but I get sick just thinking about going to the dentist.

2) I’m ashamed that when Gavin has behavioral issues,  I sometimes view him differently than I do my biological children. I perceive him as a threat and instinctively want to protect the boys from his behaviors.

3) I hate Gavin’s biological father and paternal grandmother for everything they did to Gavin and my family.  They abused Gavin and there was nothing we could do to stop it.  I will never forgive myself for what happened to my Gavin.

4) I sometimes miss my old life.  My life before I became a husband and a father.  Life is so stressful and I miss the simpler times. Having said that,  I would do this all over again if given the choice.

5) I haven’t been to see my Grandmother’s grave since the funeral,  many years ago.

6) I grew up with a neighbor that was a pedophile.  He did a lot of damage to me and many others. He was never prosecuted and I often think about confronting him. I think this is part of why I’m so sensitive to Gavin’s inappropriate touching.

7) I performed CPR on a 15 year old girl who was hit, literally run over and dragged by 2 cars, at high speed on the freeway.  You can’t even imagine what that was like. All of her clothes had been ground off of her and there wasn’t an unbroken bone in her entire body. I have never recovered from that experience and will never be able to remove those images from my head.

8 ) I lost a patient once,  that had been fighting with his wife prior to be taken to the hospital.  He went downhill so fast and we were so far away from the hospital.  The last thing he said was, “tell my wife I’m sorry and I love her”. I never did.  I had no idea how to say that and it’s haunted me ever since and affect my relationship with Lizze to this day.

9) I’m terrified that Gavin is slowly dying. So many bizarre and major things are going wrong with his health and no one can tell us how much worse this is going to get. They can’t even tell us what’s happening. I don’t know how much time we have left and I feel guilty correcting Gavin all the time because I don’t know what’s what with him. I know we have to do this but I’m afraid the last memories he will have of us or us of him, will be that of conflict.

10) I’m absolutely ashamed that I can’t do better or more for my family than I am.  A father is supposed to provide for his kids and give them a comfortable,  safe place to live and grow up.  A husband is supposed to that care of his wife and make sure she gets what she needs to improve her health. No matter what I do,  I can’t make anything better and whether or not it’s rational, it’s how I feel.


Posted from WordPress for Android so please forgive any typos as auto correct and I don’t get along very well sometimes.

Permanent link to this article: http://lostandtired.com/2012/05/29/10-things-you-dont-know-about-me/

May 13 2012

Enough is Enough

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I have decided to move this conversation into the public forum.  I’m doing so because I want to make sure there is a public record for what I have to say.  At this point,  I don’t want to leave any room for further misunderstanding and I want proof of what is going on.

Over the past few days this person has been harassing Lizze,  telling her that I’m abusive and that she needs to take the kids and move to a shelter.  These comments were posted to her youtube channel and we’re later deleted by the original author. Later, comments were left to some of my videos as well as right here on my blog.

I think introductions are in order. You already know who I am so now it’s time to shine the spotlight on the person that has choosen to insert herself into our lives.

I would like to introduce you to grandmasbabees or Diane Cxxxxxxxxx. She claims to be a writer,retired psychotherapist and college prof(psychology),former military behavior psychologist, grandma, mom,wife,kittymom, veteran(WAC), at least according to her twitter account.

While I firmly believe that everyone has the right to their own opinion, publicly accusing us of something that is both untrue and unfounded, is crossing the line. Continuing this for days, is a bit excessive.

Basically, I’m being accused of abusing Gavin and Lizze is being accused of allowing this to go on. Her approach to Lizze is encouraging her to basically grow a backbone, grab the boys and move to a shelter. She has chosen to play the advisory role to me.

Here are some of the comments she has left Lizze as well as the links to the YouTube videos they are attached to.

 

grandmasbabees has made a comment on Stolen van R 1.19.2012 Video Blog:

 

“get strong and protect gavin from your husbad, it is clear he emotionally abuses gavin, stop whining it is only a van that is what insurance is for, you ned to protect gavin”

grandmasbabees has made a comment on Meltdowns aren’t just for Gavin M 6.6.2011 5y:

“this is to you mom, you need to protect gavin from his stepfather clearly he is emotionally abusive and favors the other two. you are gavins mom take responsibility and defend and protect him, stop humiliating gavin all over the internet for “informational purposes” bullsh*t”

grandmasbabees has made a comment on Vlog June 24, 2011 12:53 PM:

“be strong for your boys, protect gavin, you can go to a shelter,, stop making excuses”

If you follow the links back to the comments page, you will find the comments have been removed. We never removed anything, I have to assume that it was the original author.

This woman seems very, very upset at the videos of Gavin having a meltdown. In all honesty, I can understand, that without bothering to read the posts attached to these videos, they could be misunderstood. However, if you’re going to be accusing me of abusing Gavin, I would suggest you do your research. If you are indeed a professional you would know that.

 

Here are some of the comments she has made to the videos on my YouTube channel.

 

grandmasbabees has made a comment on Autism and Routine:

“switch to target brand with no characters and tell him grover diapers all gone”

grandmasbabees has made a comment on Gavin Crisis 04 04 2012:

“i couldnt watch the whole thing so dont know the end… it looks like a battle of will between you two. i think it is too much on him. i would try to comfort him instead of drill sgt approach… you are not giving in to be kind and comfort”

grandmasbabees has made a comment on #Autism Meltdowns and selfinjury:

“you are too hard on him, so what about what others think your son has autism and this approach frustrates. you need to understsnd sensory, he hurts, he isnt being bad”

 

grandmasbabees has made a comment on Autism and Communication Struggles:

“seems like you are so much harder on the older one than younger one wondering if older boy is a step? in other videos my heart goes out to him”

grandmasbabees has made a comment on Gavin Meltdown 11 13:

“please get help i have watched a few of your videos and looked at your website you are cruel to gavin, you need help, it is clear you do not care about him compared to the other boys”

grandmasbabees has made a comment on Another Meltdown:

“Have you considered that this child is in pain? Real pain? Sensory issues hurt. Consider comforting him, and never use food as punishment.”

While some of these comments are tactful and appropriate, others are clearly not. I was prepared to let these go and just not pay attention to them. However, she wasn’t done there. This comment was posted on my blog and subsequenlty reported by one of my readers.

 

This comment was in response to #Autism: Sexually Inappropriate Behavior

I have to be honest here, i have watched your UTube videos too, you are very hard on Gavin. You surely favor your biological boys, and perhaps you are looking for any excuse to get rid of Gavin? Own it, if you can’t stand him that is how you feel, perhaps foster care would be a better alternative for Gavin? When I see you make him sit on his hands for so long and not comfort him when upset, it breaks my heart. I really believe CPS shoud get invoved. And stop whining and asking for money. There are plenty of social service programs, call your County. If your wife can get onine and video blog she is well enough for you to work. Just sayin it like I’m seein it. Yes it is tough having special needs kids, but there is no excuse for how you treat Gavin.

 

This is when I began to really get frustrated. Now I realize this is just some random person online and I shouldn’t care…

However, Diane claims to be a professional and psychotherapist. If that is indeed the case this is even more concerning to me as she has or had, access to people in real life.

I posted earlier today asking for her to stop and contact me directly if she would like to discuss what’s bothering her. She did so in email form. I would like to respond to her email but I’m concerned that anything I write will be twisted to fit her agenda. So I have decided that it would be best to address this publicly. This way there is never any question as to how I handled this person and responded to her email.

 

This is the email I received a few hours ago.

 

I am mandated by law to report what I suspect as child abuse  To continue to film your stepstop gavin on you tube, in extreme emotional pain, for the profit of your website is horrible.  You please cease and desist publicly humiliating him and using him to promote your website.  There are numerous tapes where you have coldly filmed him in “meltdown” and made him sit on his hands until he falls asleep.  Be careful what you put out on the web.  People watch and will report.   I’m doing my research now, what I see I don’t like at all.  I am an advocate for austistic children.  And by the way, in your header, you mispelled “honesty” just letting you know.  You know who I am?  I know who you are, we are even.

Now, I would like to reply to this and hopefully put this to rest because I really do have bigger things to worry about.

Diane,

I really do appreciate your concern for Gavin. However, accusing me of abusing him and trying to convince my wife to take our boys and run to a shelter is beyond irresponsible. You haven’t bothered to actually research why I handle Gavin in the manner I do. I hate having to address him like that. I’ve said that many times before. However, things aren’t always as they seem on the surface. As a psychiatric professional, I’m sure your aware of that. Perhaps you simply forgot. It happens to the best of us.

I’m not going to justify my actions because I have already explained, countless times in the posts attached to the videos you are so concerned about. Read and you shall discover the information you are looking for.

You also expressed concern about me making Gavin sit on his hands. You even went on to say that he does this for so long that he falls asleep. That is simply a fabrication and I challenge you to show me where you have seen that. Having personally, been there when these events occurred, I can tell you that Gavin has never fallen asleep while sitting on his hands. The only reason Gavin sits on his hands is for his own safety. If he didn’t sit on his hands he would be punching himself in the face and slicing his face, arms and legs with his finger nails. He has been admitted for psychiatric care due to self-injurious behavior many times and this is very well documented. We have to ensure not only his safety but the safety of those around him. He only has to sit on his hands until he can keep his hands safe. It puts him in control of when he can get off his hands. This practice was born out of necessity, not a desire to treat him in a cruel fashion.

As far as the whole oatmeal thing goes, that was something we tried out of desperation. Gavin is not even close to your typical child with Aspergers, not that any are, as each are unique in their own right. Gavin is extremely complicated and has layer upon layer of mystery surrounding him. Again, if you were indeed a professional, you would have likely picked up on that already. However, you don’t need to be a professional to pick up on this. All you have to do is read from the literally hundreds and hundreds of posts here on this very blog about that very issue.

Gavin is a master of manipulation and very often uses these meltdowns as a means of trying to get what he wants. These meltdowns occur when he is being held accountable for his actions. I would never do anything to hurt any of my children and I’m honestly beside myself that a professional, such as yourself, would make such a public claim based on zero first hand knowledge and a knee-jerk reaction to something you saw on YouTube and clearly misunderstood.

If you are indeed an Autism advocate, you would likely know that your approach to this entire situation was flawed from the very beginning. Not only was your approach unprofessional but it was reckless as well. Someone in your position, shouldn’t handle themselves in the manner in which you have. What gives you the right to tell my wife to leave and go to a shelter? You have no idea why things are the way they are because you never bothered to investigate further.

My wife will be sharing her own thoughts when she is in a better place to do so. You have upset her greatly and caused her undo stress.

You have worn out your welcome and I will ask you once again to please go away.

Permanent link to this article: http://lostandtired.com/2012/05/13/enough-is-enough/

May 09 2012

To all the special needs families

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I’m the kind of person that finds a great deal meaning in music. I’m really trying to pass that on to my kids because music is such a powerful expression of ones soul. The words to a song can resonate with a person in a way nothing else could. A song has the power to heal someone in pain or change your perspective.

For me personally, I love the way a song can instantly spark a memory and transport me back in time to a place of cherished memories. When I come across a song that provides me with inspiration or touches me in a way that impacts my life in a positive way, I like to share it with all of you.

This song plays over and over in my head throughout the day. It’s like it was written for me as a way to express what I feel for my family. I believe that this song will apply to so many special needs families out there and I wanted to share this with all of you as sometimes hearing something like this can help on a really dark day. I hope you find as much meaning in this as I do. The words just seem like they could have been written by a special needs parent to their family.

The song is called:  I won’t give up and is by Jason Mraz.

YouTube Preview Image

Permanent link to this article: http://lostandtired.com/2012/05/09/to-all-the-special-needs-families/

May 05 2012

Does this make me a bad person?

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In the Lost and Tired family, we don’t believe in spanking or hitting.  So we have to do a lot of outside of the box thinking.

We recently took in a puppy a couple of months ago. Bella has been a great edition to the Lost and Tired family. Although she doesn’t require some patience and training.

Elliott and Emmett are requiring a great deal of time, energy and most of all, patience.  I’m becoming increasingly overwhelmed and frustrated by their behavior. Their are both fanfreakingtastic kids and I love them completely.

Having said that, sometimes I find myself wanting to use the training methods from Bella as a means of deterring the problem behavior with the boys.

Basically,  it would go something like this.  When Emmett and Elliott were fighting or doing something else they should not be doing,  I would break out the spray bottle and squirt them.  They both hate getting wet so I think it would work.  The question is whether of not there is ethical issue with that :-)

Of course,  I’m not actually going to do that but sometimes I wish I could.

When the boys start fighting, I could simply squirt,  squirt and they would stop. Then I could keep the squirt bottle on the mantel to serve as a reminder.

Like I said, sometimes I just want things to stop and employing methods like a squirt gun or spray bottle don’t always seem so wrong..

Anyone else ever feel this way?

**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/05/05/does-this-make-me-a-bad-person/

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