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

Tag Archive: age

Mar 25 2013

#Autism and talking about death or loss

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I think that this is an extremely important topic and one that we are experiencing right now. How do you talk to your Autistic child about death? I think that this is a very sensitive issue because we have very sensitive kids. How do you explain to a child, let alone a child with Autism, that a loved one has passed on? How a situation like this is handled can have a lasting impact on your child.

I spoke to Elliott and Emmett this morning because they were going to noticed that something was different about Mommy. For anyone that’s a bit tardy to the party, Lizze lost her Aunt Paula early this morning. She fought a war against cancer for a very, very long time. She is among the bravest souls I have ever had the honor of knowing.

Lizze and her Aunt Paula were very, very close and so she has been hit hard by this. I wanted to make sure that the boys understood what was going on because they are prone to anxiety and they will worry their little heads off about their Mommy.

I explained to them that “Mommy might be acting a little different than you’re used to. Everything is okay but Mommy’s just really sad.” They wanted to know why and I explained to them that “Aunt Paula was very sick and she died last night.” I needed to be very careful that they didn’t generalize this as people on the Autism Spectrum can do.

I couldn’t have them fearing that anyone that gets sick is going to die. They understood for the most part, at least Elliott did. Emmett kept asking friggin questions that I really didn’t know how to answer.

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My kids are very intuitive and never seem to be satisfied with age appropriate answers, especially Elliott. I absolutely dread have the sex talk with him. I can’t imagine the questions he will have then……

Today’s talk with the boys about death and loss went pretty well. They seem to understand and I actually survived the discussion without putting my foot in my mouth, not even once.

Something to remember is that every child is different.

A discussion of this caliber, benefits from having thought about what to say before you say it. There are so many times that I thought I could handle a sensitive conversation with my kids, only to end up completely frazzled and panicked because my kids started asking questions I wasn’t prepared to answer. Whenever possible, you should plan the conversation out, for the love of God, don’t wing it unless you have no other choice.

Keep the following in mind:

1.) Keep the conversation simple.

2.) Remember to be age and developmentally appropriate.

3.) Be prepared to answer questions in a very matter of fact way.

4.) Don’t freak out if your asked a question you don’t know how to answer. Simply redirect.

5.) Many kids on the Autism spectrum can an will pick up on your subconscious ques. If you’re upset, they’re upset.

6.) Be very reassuring and remind them that they are okay.

7.) Try to smile, even if you feel like vomiting. Remember they will follow you’re lead.

8.) Don’t drag the conversation out too long.

9.) Redirect, if the conversation takes a turn you want to avoid.

10.) Remember that you may have to explain things differently to different kids, even if they are siblings and don’t forget that you can redirect if you need to. This can and will be a life saver for you.

This list is meant to provide you with the basic tools needed to approach a sensitive conversation like death or loss. Sometimes it’s best to involve a professional, like we do. We have Dr. Patti to fall back on whenever we need guidance or simply don’t know what to say or do.

I wish you the best of luck and remember you can always share your experience here and everyone would be happy to help. In fact, please share your tips or tricks, as they relate to discussing sensitive issues with your kids on the Autism spectrum.


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Permanent link to this article: http://lostandtired.com/2013/03/25/autism-and-talking-about-death-or-loss/

Apr 11 2012

#Autism: The 12 year old toddler

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The Age Gap

em>One of the most frustrating parts of raising a child on the spectrum for me is what I call the age gap. I have spoken about this before but it is something I struggle with everyday. I constantly have to remind myself to look below the surface before I react to whatever is going on.

The Disclaimer

 

Please keep in mind that I’m speaking only to the experience I’m having with Gavin. In the Lost and Tired family, Gavin is the best example of this phenomenon. Please don’t take this as a blanket statement about all Autistic persons. Everyone is different and so this may not apply to your situation. However, I will say that I have heard from many parents who are dealing with the exact same issues. This is not meant to be insulting to anyone, the point is to help with perspective. 

I wish there was some kind of magical truth mirror or something. This mirror would show a true reflection of who you are on the inside.

I think that many people aren’t aware of this age gap.. They aren’t aware that with kids like Gavin, looks can and will be decieving. You look at Gavin and you see a 12 year old boy throwing fit or melting down when he doesn’t get his way. However, there is quite so much more going on underneath the surface. While Gavin does have control over himself in many of these behavioral situations, this gap in age plays a huge role in his decision making process.

If you stuck Gavin in front of this special mirror or looked at him through a magic lens, you would see a small child not 12 year old boy. Gavin is emotionally stunted at about 3 or 4 years of age. His intelligence is that of a 12 year old boy but inside he is only 3 or 4 years old, emotionally.

Symbolic of the age gap

In other words, when he’s stressed out or overwhelmed he will react like a 3 or 4 year old would. So in a sense he’s an 12 year old toddler as developmentally, that’s about where he’s at. This is something that I find myself struggling with everyday.

It’s really easy to forget this when he’s in the midde of a meltdown. I tend to want to hold his accountable as an 12 year old for his behavioral choices.

The problem with that is he simply isn’t 12 years old developmentally.

For me, It’s far to easy to see someone that is just being difficult or uncooperative instead of seeing the situation for what it is. If Gavin were actually 3 years old then this behavior wouldn’t be such a hard pill to swallow. It’s age appropriate for a 3 year old have meltdowns and tantrums.

When you see Gavin melting down it’s pretty easy to assume things about him. However, the reality is far more complicated than that. It’s never a good idea to assume things about kids with Autism. While Gavin is probably not the purest example of this simply because of everything else he has going, I think the principle is the same. Many kids on the spectrum have a sizable gap between their emotional and chronological ages. Hence the developmental delay of Pervasive Developmental Disorder.

As a society and even as parents to these amazing, yet challenging kids, we should try to keep this in mind.

It’s really important to keep perspective when dealing with these very special children because it will help you to better understand their behavior.

Disciplining your child is a very difficult part of being a special needs parent. Trying to find that balance between real world accountability and what they can actually be held accountable for is a never ending struggle.

Perhaps this will give you a fresh perspective on things. Maybe it will help you to consider more age appropriate ways of addressing the inappropriate behavior. If nothing else it’s something to think about.

It’s a good idea to learn your child’s emotional age as it will give you valuable insight into their world. You can gain a better understanding of what makes them tick and also what drives their behavioral decisions. Problem behaviors still need to be addressed and there should be consequences, but you will have a better understanding of why it’s happening, insight into more age appropriate disciplinary actions and even how to avoid some of these behaviors going forward.

Just some food for thought……..  🙂

Permanent link to this article: http://lostandtired.com/2012/04/11/autism-the-12-year-old-toddler/

Mar 09 2012

#Autism: When regression happens

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If I had any hair left,  I would be pulling it out right now.  Emmett is absolutely impossible lately. He is aggressive,  moody and ill tempered.  Lizze described his behavior pretty accurately when she said Emmett is acting like teenage girl with PMS.

He is literally all over the place.  He’s not listening,  he’s bullying his brothers and the dogs.  Anything he can get his hands on,  he will destroy. 

The little booger is even going into Gavin’s room,  just to go into his drawers and throw his clothes all over the floor. He’s dumping toys out after they have been picked up and put away.  It’s not like he’s lacking attention,  as he gets more attention than anyone in the house.

It’s almost like his personality is shifting and I’ll be real honest with you.  That scares the crap out of me.

Emmett is about the exact age that Gavin began to regress.  Losing Gavin to regression like that….it broke me in a way that just never heals.  A part of me died all though years ago. 

Now I have become hyperaware of the whole regression thing and it really has me worried. Emmett has been showing more and more Autistic traits as time goes on. I’m sure that’s not to uncommon but when you have been through what we have with Gavin,  this is like our worst fear realized.

I pray that this is just a phase and not a sign of something worse.  The worst part about this for me is that I will never know if or when these changes would occur.  With Gavin,  we had no idea what was happening and before we figured it out,  the Gavin that used to be,  no longer existed. There were things that we never got to do and things I wish I had been able to say.  I can say those things now but Gavin doesn’t connect that way anymore.

I can’t bare the thought of losing Emmett in that same way……….

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

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Posted from WordPress for Android so please forgive the typos. Auto-correct and I don’t get along very well.

Permanent link to this article: http://lostandtired.com/2012/03/09/autism-when-regression-happens/

Mar 04 2012

What happened 6 years ago today?

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Elliott Richard turned 6 years old this morning. I know that many of you are new to my blog so I thought I would introduce you to Elliott and share with you something about him. :-)

Elliott Richard (ER) is our 6 year old miracle child. He survived a VERY complicated pregnancy and was born premature, 6 years ago today. Shortly after birth his left lung burst followed by his right lung. He then battled pneumonia. It was honestly the most helpless I have ever felt in my life. We were told to prepare for the “worst”, At one point he was almost life flighted to the Cleveland Clinic. He spent about 2 weeks in the NICU but fought through it and came out the other side. He is now, ironically, the healthiest of all the kids. Elliott Richard is extremely advanced for his age.

He loves animals and anything his big brother Gavin likes. He likes playing his Nintendo 3DS and drawing in bed. He is a gentle soul and a very sweet and compassionate little boy. He struggles with anxiety and may have a touch of ADHD as well. Elliott Richard went through the Akron Children’s Hospital Autism Clinic in order for us to become more “Autism Aware” of him. We got a better idea of what makes him tick and how we can help him with his struggles. Elliott Richard is a “big little” brother. Meaning he is a big brother to both Emmett John and Gavin.

He was diagnosed as having Aspergers and is on the very high end of the spectrum. Elliott Richard is our “lady killing” social butterfly. He is in kindergarten this year and is doing very well. We are struggling with anxiety issues but academically he’s doing great.

He is always looking out for his brothers but takes a lot of abuse physically from Gavin and physically from Emmett John. We do everything in our power to help Elliott Richard along his journey and we are truly BLESSED to have him in our lives.

This video is a something I put together 5 years ago to celebrate Elliott making it to the 1 year mark. This was a tribute to the NICU that saved his life.  I cry every single time……still. It often helps me keep perspective. I have made it a point to share this on his birthday  every year. I reminds me just how preciously fragile life can be….

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Permanent link to this article: http://lostandtired.com/2012/03/04/what-happened-6-years-ago-today/

Feb 25 2012

Progress is progress, right?

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At age 3 and approaching age 4, Emmett still doesn’t tolerate clothes most of the time.  OT has been working hard to help with this and we have seen some improvement. 

For example,  shoes and socks aren’t as difficult for him anymore.  He’ll take them off the second he gets the chance but he tolerates them much better now.

Clothes on the other hand are a different story.

He has started wearing pajamas more often and that’s a rather big accomplishment.  You may not even recognize him in the picture below because he’s actually wearing pants.  He’s wearing pants and some hat thingy that Elliott made at school. 

While some people may think,  whoopy he’s wearing pants,  big deal.  Well,  it’s a pretty freaking big deal,  because he never wears clothes.  Anytime he does is considered a step forward.

I know most of you out there get what I’m saying.  :-)

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**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

MyFreeCopyright.com Registered & Protected

Posted from WordPress for Android so please forgive the typos. Auto-correct and I don’t get along very well.

Permanent link to this article: http://lostandtired.com/2012/02/25/progress-is-progress-right/

Feb 23 2012

Autism, Regression and My Littlest Angel

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Of our 3 boys on the spectrum, Emmett,  our 3 year old is the most profoundly affected by #Autism. He is considered pre-verbal as he has developed some language and speech skills.

However,  despite the great strides he has made in the last year or so,  he is still severely speech and language delayed. It’s really easy for me to forget just how much he struggles with communication because we are so used to it that we are able to decipher a lot of what he is trying to say.

Having said that,  it’s an immediate crash back to reality when I see Emmett with a neurotypical peer.  The difference in speech and language is undeniable,  especially when it comes to expressive language.

I haven’t written about this because in some weird, irrational way,  I thought by  not writing about it, it would be less real.  If that even makes sense.

At Emmett’s last session with Dr.  Pattie,  the discussion centered around how Emmett is showing more and more Autistic traits as time goes on. He has,  over time,  become extremely sensitive to things like imperfections in a sucker or water on his shoes. He has become a perfectionist and an extreme one at that.

It’s gotten to the point where we will have a 45 minute meltdown over a slight imperfection in a chicken nugget that he is only going to chew up anyway.

We have also noticed that he is using less and less speech as time goes on.  We are always working with him and I do my best to incorporate him into many of my daily tasks,  if for no other reason than to work on conversational skills. We always make him use his words but anymore,  we hear more screaming than anything else.

What literally terrifies me,  is that he is approaching the age that Gavin began to regress. That doesn’t mean it will happen to him but it already seems to be happening,  just not as rapidly as Gavin did. There is always a part of me that will fear this.

When you lose a child to the regressive form of Autism,  that sticks with you for the rest of your life. When your other kids approach that same age,  you worry.
I truly hope and pray that Emmett is just in a phase and that we will pick up and continue to move forward.

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum

MyFreeCopyright.com Registered & Protected

Posted from WordPress for Android so please forgive the typos. Auto-correct and I don’t get along very well.

Permanent link to this article: http://lostandtired.com/2012/02/23/autism-regression-and-my-littlest-angel/

Feb 11 2012

#Autism and Sexually Aggressive Behavior

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We have found ourselves once again dealing with inappropriate touching.  It’s been a little while since this has been an issue but today it has returned.

Long story short,  Elliott came downstairs and told me that when he was trying to come downstairs,  Gavin grabbed him and wouldn’t let him go down the steps.

Elliott then explained that Gavin kissed him twice,  without asking Elliott’s permission.

According to Elliott,  Gavin kissed him on the side of the head,  both sides actually.

While that may not seem like a big deal,  it really is.  Gavin either has no concept or no respect for other people’s boundaries.

Sometimes it seems like a simple boundary issue and other times his behavior is clearly predatory in nature. I don’t know what today falls into but I do know that Gavin knowingly broken the rules.

We sat him down with Dr.  Pattie and discussed how this type of thing is inappropriate.  We explained that once you get to a certain age -and we used Gavin’s current age at the time- its no longer OK to make physical contact without permission.

We went further and explained what physical contact meant.  He should not be putting his hands on anyone without that person having given permission. We told him that he should hug or kiss anyone without the other person saying it was OK.

He is also not supposed to hug or kiss his brothers without Mommy or I present and watching.

This has to be this way in order to protect our other kids.  Gavin has a history or being sexually aggressive.  In the past week have caught him sneaking into Elliott’s room at night to give Elliott a proper kiss goodnight.  It’s really creepy and I’m not the only one to say that.

So after Elliott told us what happened,  I called Gavin down and asked him what had happened.  His story was a bit different than Elliott’s but it basically ended the same way,  Elliott was touched in an inappropriate way.

We have a zero tolerance policy for this type of behavior.

Gavin was immediately grounded. By grounded,  he was done watching TV for the day and he would be having oatmeal for dinner instead of roast.

He completely lost it. A horrendous meltdown soon followed.

After making sure Lizze and the other boys were OK -because Elliott and Emmett scurried over and buried themselves behind Mommy on the couch- I went upstairs to keep Gavin under control.

I’ll be very honest with you.  When this happens, it’s very difficult to keep my cool because no one and I mean no one will ever hurt any of my babies.

I did the best I could to remain calm and keep control over the situation but I probably could have done a better job.

The video below shows part of the meltdown.  I didn’t get to him right away so I missed something of it.

The really frustrating part is that he has no remorse.  He’s upset because he wanted roast for dinner not because he did something wrong.

How do you teach a child right from wrong when they just don’t get it?

 

 


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Permanent link to this article: http://lostandtired.com/2012/02/11/autism-and-sexually-aggressive-behavior/

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