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

Tag Archive: matter

Dec 16 2012

Good spirits but lots of pain

Sadly, Lizze was not feeling well enough to attend her family’s annual Christmas party. She spent all she had taking the kids to see Santa.

The kids actually slept until 7am this morning, which is unheard of.

Lizze is in a great deal of pain already today.  However, she’s in good spirits, which I can’t imagine is easy to accomplish when one is in that much pain.

I so admire her courage and fortitude.  She just keeps pushing on, no matter what.

Hopefully, she’ll feel better as the day goes on, Lord knows she deserves it.

Permanent link to this article: http://lostandtired.com/2012/12/16/good-spirits-but-lots-of-pain/

Jun 13 2012

My friggin rant

I’m gonna be real honest here and tell you that Gavin is driving be plumb loco.  We’re talking beat my head into the wall just to make it all stop. He doesn’t listen and I honestly don’t know if he’s even capable of listening anymore. 

I realize how that sounds but I swear to God that he just never seems to learn or follow directions.

At times it seems as though he’s just not capable of following even the simplest of directions. I’m sooooo friggin tired of repeating myself.  It would be easier and far less exhausting to just yell at him when he doesn’t listen.  However,  I don’t do that,  as I feel yelling at him would only be setting a bad example and teaching him that yelling is ok.

There are times that I have to raise my voice but I rarely ever lose my patience with him.

I can’t begin to explain just how exhausting that is. I’m so tired of playing nice and giving him the benefit of the doubt.  I’m frustrated because no matter how much time and energy I pour into Gavin,  nothing seems to stick.  The time and energy seems to be wasted on him and it’s time and energy that I could have given the other two boys.  They would actually benefit from it as well.

Most of the time I can cope but today has just been extremely stressful for me and I just can’t take a whole lot from of his behaviors tonight.

Do you ever get to a point where you literally feel like your head is going to explode and you’re going to go crazy if you don’t get a break. Maybe not necessarily in that order but you get the point.

Something has got to give. Even if we decided to try inpatient care,  I could take months and months to find a place that will both work and have open beds.

This is one of those situations that I’m screwed no matter what I do. 

Permanent link to this article: http://lostandtired.com/2012/06/13/my-friggin-rant/

May 06 2012

What’s the last thing you say to your kids at night?

I have this thing about having to tell my kids every night how much I love them.  Even when they’re sleeping,  I tell them how proud I am to be their Dad.

When I first put them down at night,  even if it was a bad day, I telling them at least one thing they did today that made me proud.

I feel it’s very important to focus on the positive behavior as well as the behavior that needs to be adjusted.

Despite how completely crazy our lives are,  I find that it’s pretty easy to find things,  even small ones,  that I’m proud of them for. If all else fails,  I tell them that I’m proud of how they never give up.
When it comes to Emmett,  him and I have this special thing.  When I tuck him in at night,  I tell him that no matter what,  I will always love him.  I sayI love you, even though you can be a giant booger.  He gets a kick out of that and so it’s our little thing.

What is the last thing you tell your child before they fall asleep?

**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/05/06/whats-the-last-thing-you-say-to-your-kids-at-night/

Apr 21 2012

#Autism: Ignorance and Judgement

This post is dedicated to all the beautiful families out there that have been touched by #Autism more than once. While my words won’t remove the sting of another person’s snap judgement, hopefully it will at least feel good to know that you aren’t alone :-)

Dealing with ignorance and insensitivity

I’m sorry to hear of your situation and of your wife’s illness. That must be very difficult on you and your family. I hope she is doing better and recovers soon. However I find it difficult to have empathy for your having 3 children with autism. I’m sure you understand once you have one child with autism the risk for the other children having autism greatly increases with each child thereafter. So knowing that information I would have assumed you would have been better prepared for the situation. Not everyone would understand your reason for bringing these children into the world and the burden they place on society. I wish you all the best but wanted to give my opinion (and of others who feel the same way but are hesitant at posting).

why did you continue to have children that will ultimately be a burden to society when you knew you and/or your wife were genetically defective?

The quotes above are among the numerous comments that I have received in either email or comment form recently. Since the my 1st CNN article ran earlier this week, it seems I have been getting these kinds of comments more frequently. I typically let these things roll right of me but that doesn’t address the root problem now, does it. Plus, sometimes these comments really do get offensive and the big ‘ol papa bear in me wants to respond.

What I always find interesting is that these people typically hide behind the name anonymous. I mean if your so confident in your opinion of someone else’s life choices, than why not be confident enough to share your identity, or at least come up with a clever screen name.

I realize that by putting myself and my family out there, I’m welcoming all kids of people with varying opinions into the mix. For the record, I fully support everyone’s right to their opinion, that’s not my problem.

My problem is that people make judgments and or form opinions based on little or flat out incorrect information. 

I have seen this type of thing happen to others as well. Someone comes along and decides that they are going to share their unsolicited and unwelcome opinions about a family they come across. In the #Autism community, this typically revolves around families like mine, with multiple children on the #Autism spectrum. People, like the ones quoted above, assume that when child #2 was born, child #1was already diagnosed with #Autism. That’s a very big assumption and you know what they say about people who assume……….

In reality, many times kids aren’t diagnosed until ages 2 or 3. In some cases, like that of the Lost and Tired family, kids aren’t diagnosed until closer to 4 or 5 years of age. Other times, again, as with the Lost and Tired family, we are actually two families blended together.

Why does this matter?

So why does this matter? Well, in all honesty, it shouldn’t, and I truly, truly mean that. Building a family is a deeply personal decision and no one has the right to judge you for doing so. However, for the sake of addressing the above comment’s and possibly heading off anyone from asking the same insensitive questions, I’ll explain.

Let me start by explaining what I mean by a blended family. Actually, I’ll just give you an example. Gavin, is not my biological child. He’s is from my wife’s previous marriage and therefore has a different father. I have raised Gavin as my own since he was a 15 months old. When Lizze and I got married in 2003, and eventually had children together, we became blended. Although, now that I think about it, since I adopted Gavin, I suppose that changes things a bit. Well, anyway, we are at least blended genetically. Make sense?

Typically, when a couple decides to have multiple kids, I think it’s fair to say that many times they aim to have them about 2 years apart. While that may not apply across the board, I think it’s pretty safe to say that in many cases it does.

Having said that, with most kids being diagnosed between the ages of 2-5, how is a parent who has their kids about 2 years apart -whether planned or unplanned- supposed to know that their first child is going to be diagnosed with #Autism? The families that have 3 kids, 2 years apart, could still be in the dark about their 1st child, when they find out number 3 in on the way. It’s important to note that sometimes kids are diagnosed with #Autism even after the age of 5. So as you can see, it’s not that cut and dry, unless of course you have a working crystal ball and can accurately predict the future.

The bottom line

So what’s the bottom line here? Well, for starters, I think it’s pretty clear that no one sets out to have multiple kids on the #Autism spectrum. If there are people out there that do, well, I have not considered their intentions when writing this article. Having said that, even if they did seek to have multiple kids on the spectrum, whether I agree with them or not, it’s their choice. I have never heard of anything like that before but that doesn’t mean it hasn’t happened.

Now, moving on to the more typical scenarios.

Is it true that there is a genetic link to #Autism? Yes, that’s true. Does it mean that if you do happen to know your 1st child is on the #Autism spectrum, you shouldn’t have more kids? While that’s not my decision to make, I’m inclined to say no, and here’s why.

Nothing in life is ever for certain, except that our time on this earth is limited. There are tons of couples that continue to build their family after a diagnosis of #Autism. Sure, some of those families may end up with more kids on the #Autism spectrum, but many others won’t. Are the families with multiple kids on the #Autism spectrum any less of a family than those with only one, or for that matter, none? Of course not, and if you answered yes, then I truly feel sorry for you.

Building a family is one of the most amazing things the human race has accomplished. Is it right for someone to sit in judgement and decide that someone else’s family is somehow wrong, because they are faced with more challenges? Does anyone have the right, ethically, to cast judgement on another because they have made the personal choice to continue building a family after an #Autism diagnosis? The answer is absolutely and unequivocally no. 

Even though we may need help along the way, be it governmental or from other more compassionate and understanding human beings, our families shouldn’t be considered a burden on society. In fact, to the contrary, society could stand to learn a few things from families like mine. Things like unconditional love and acceptance comes to mind. Appreciating all the little things in life and never taking anything for granted, is another. How about, never giving up, no matter how alone, overwhelmed, frustrated or lost and tired we feel.

Despite all the many challenges we face as special needs families and any help we may need along the way, our families are just as valid, amazing and beautiful as anyone else’s. Please don’t let anyone, ever convince you otherwise. :-)

While I fully support your right to form an opinion, that doesn’t make your opinion anymore valid the what’s written on a scrap of paper inside a fortune cookie. If you feel the need to criticize my family or anyone else’s for that matter, solely based on the fact that our beautiful, amazing, wonderful and yes, challenging kids have #Autism, I suggest you peddle your wares else ware, because we’re not buying.

 

Permanent link to this article: http://lostandtired.com/2012/04/21/autism-ignorance-and-judgement/

Apr 14 2012

What does Lost and Tired stand for?

I thought it would be a good idea to share a bit about why I have started and actively maintain this blog. Many of you are already familiar with this but many of my new readers may not.

To me, Lost and Tired says everything.  Those three words so accurately describe how I feel,  on many occasions.

The purpose of my blog is to raise #Autism awareness by opening up our lives in a way that few others do. I feel that the only way people are going to understand is if they are allowed to step into my shoes for a short period of time.

As an example,  most people unfamiliar with #Autism could not begin to imagine what a meltdown is like.  How could they?  If I didn’t have first hand knowledge,  from years of experience,  I would never believe just how bad a meltdown can be. This is why I will occasionally post videos of meltdowns we experience on an almost daily basis. The goal here is to help people see what families in my situation may be dealing with.

My wish is that people become more understanding because they gain a new perspective after seeing what my family struggles with. Sometimes it’s hard to comprehend something until you have seen it with your own eyes.

One of the other goals I have is to help bridge the gap across the rift that has formed within the #Autism community.

We shouldn’t be divided by our petty differences.  We are all going through something very profound.  Some have it easier than others but we all go through periods of time where we find ourselves Lost and Tired. Instead of being divided by our differences, we should be reaching out to each other and offering support,  compassion and understanding.
What does it matter if someone believes vaccines cause #Autism? Like wise,  what does it matter if they don’t?

The truth is that all of our lives have changed course as a result of our lives somehow being touched by #Autism.  We have all experienced the heartache of learning our child has #Autism for the first.  We have experienced the joys of progress,  no matter how big or small.

To me,  we have more in common than we have in differences.  Why we choose to focus on the differences is a mystery.

As a father to 3 boys in profoundly different places on the #Autism spectrum, I have a good understanding of how every child and experience is different. I have one child that has handled his vaccines just fine and I have one that has had serious reactions to being vaccinated.

My goal is to be a voice of reason.  I want people to know that despite how they feel,  they are not alone.

Lost and Tired is a place that people can let their voice be heard,  regardless of what their personal experience is.  It’s also a place to seek advice from other people,  both parents of children with #Autism and adults with #Autism as well.
I see us all as a huge family and family looks after each other,  no matter what.
I have made myself available to anyone that wants to talk or ask questions.  I think that creating a dialog is a pretty huge first step to a more unified #Autism community.  I’m honored to be a part of it and I’m honored to know each and every one of you,  even if we share different points of view.

I invite you all to join me and focus on the bigger picture, the future of our children #Autism as well as the future of the children with #Autism that have already entered adulthood.

If I can ever be of any help to anyone, please don’t hesitate to contact me.

**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 any typos as auto-correct and I don’t see eye to eye. :-)

Permanent link to this article: http://lostandtired.com/2012/04/14/what-does-lost-and-tired-stand-for/

Mar 18 2012

Is it bedtime yet…..how about now?

I’m the kind of person that’s likes to take advantage of every moment with my kids. Their only little for a short time..right? 

Having said that,  if I could fast forward to bedtime tonight I would…  Elliott and Gavin are doing pretty well but Emmett is impossible right now.  I don’t know what has gotten into him but whatever it was must have been laced with hyperactivity,  defiance,  aggression and a pinch of crazy.

He is just all over the place and it seems as though he enjoys wreaking havoc on every one in the house.

In reality,  he’s getting a reaction from the boys and that’s the pay off for him.  No matter how many times I explain to the boys,  especially Elliott,  not to react,  they never seem to catch on.

Right now,  Emmett begins a chain reaction that ends with Elliott freaking out,  Gavin melting down and Lizze and I looking for the closest circus that we can both run away to. 

I just need to make it 2 hours.  That’s it,  just 2 hours.  When I say it out loud like that it doesn’t seem so bad.  However,  in real life,  it swear to God the clock is rolling backwards………

Permanent link to this article: http://lostandtired.com/2012/03/18/is-it-bedtime-yet-how-about-now/

Mar 12 2012

#Autism: The still of the night

I know it’s no secret that life with an Autistic child can be challenging.  I also know that for some,  myself included,  that can be a gross understatement.

There are so many days that I feel like I just can’t continue.  The struggles are just to great and I don’t know if I can find the strength to get up,  even just one more time. Sometimes,the last few hours of the day are the absolute most difficult to survive. I know at least some of you out there understand what I’m talking about.

While everything I said is the truth,  at least my truth,  there is one exception.

Every night,  when I check on my babies,  the very same ones that were driving me crazy all day long, I see them sleeping so peacefully.  In the brief moments that I see them before I drift off to sleep myself,  I realize just why I go through this, day in and day out.

I do it because they are worth it.  I do it because,  despite all the heartache and frustration I experience each and every day,  I truly love them more than anything in the world.. In these brief moments,  I remember that they need me.  I remember what it was like to watch them be born and hold them for the very first time. I also remember the promise I made each of them in their first few seconds of life.

I promised to always be there for them,  no matter what.  That no matter what includes all the chaos and all the challenges.

Sometimes it takes a moment like this to help me gain perspective and remember why I get up each and every morning just to go through the same struggles that I went through the day before.

 

I see my angel’s sleeping peacefully, safe and sound. This is the last thing I see before I close my eyes and prepare for the next day.

This is where I find the strength to keep going. I just wanted to share that with all of you.  :-)

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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.

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Permanent link to this article: http://lostandtired.com/2012/03/12/autism-the-still-of-the-night/

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