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

Tag Archive: special needs

May 18 2013

What’s the toughest part of raising a child with #Autism?

There are so many things in life that can impact how hard or challenging it is to raise a child on the Autism Spectrum. 

For me personally, I think the fact that all three of my boys are autistic and have different and oftentimes conflicting needs, is among the toughest thing I face as a special needs parent.

When I say conflicting needs, I’m referring to things like sensory processing issues. 

Each of my three boys are individuals and unique in their own right. They each have challenges in the sensory arena. 

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These challenges range from tactile, visual, auditory and olfactory to things as simply as taste. 

Because they are each different, there is no way to one stop shop when it comes to anything with them. What’s good for Gavin may drive Elliott crazy.  What’s good for Elliott might be detrimental to both Emmett and Gavin. 

I spend a large part of my day, simply chasing my rail and putting out fires. 

It would be great if I could make one dinner that everyone could eat, instead of making something that each person can tolerate and is willing to eat. 

That’s just one example but for me, it’s one of the biggest challenges I face on a daily basis.  It might not even seem like much but it’s exhausting and just one of the many challenges I face, each and every day.

When you stop for a second and think, what would you say is the most challenging thing that you face as a special needs parent?

I have many readers that don’t have any experience with a special needs child. What would you want them to know about you find the most challenging part of special needs parenting?


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.



Permanent link to this article: http://lostandtired.com/2013/05/18/whats-the-toughest-part-of-raising-a-child-with-autism/

May 17 2013

I’m getting Gavin into the cardiologist ASAP

One of the things many special needs parents are lacking is a friggin instruction manual for their often times, quite complicated children.

I realize that no child comes with a set of instructions but most parents are able to muddle through.

When it comes to special needs children, it’s almost a cruel joke that they don’t come with at least guidelines. I mean honestly, who do we need to talk to about this?

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Special needs parenting is hard enough as is.  Parents like ourselves, could benefit from a basic set of guidelines or in structures. At least I know I would.

When it comes to Gavin, I find myself in desperate need of a goddamn instruction manual.

With everything he has going, he’s so complex and so unique that no one can really tell us what to do.  For example, the issues he’s having with his heart rate and blood pressure are serious and yet because what he has is so incredibly rare, no one can tell us what do.

We’re sorta feeling our way through the dark. 

We’ve decided that we are going to visit his cardiologist and find out from a cardiovascular standpoint, do we need to worry about his heart rate? If so, at what point is this something that we really need to worry about?

I need some sorta of guidance because I am completely lost right now and have no idea what we do or where we go….


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.



Permanent link to this article: http://lostandtired.com/2013/05/17/im-getting-gavin-into-the-cardiologist-asap/

May 10 2013

What judgement is like for a special needs parent

As if I didn’t have enough on my plate to deal with, I’m finding myself on the receiving end of some rather unpleasant and heartless comments, especially lately. 
If I said that these people don’t both me, that wouldn’t be quite true.  Am I devastated by what these people say? Not a chance, but that doesn’t mean I don’t feel the need to address these people.

To me, this is a symptom of a larger problem.

That problem is a lack of awareness, compassion and understanding for what families like mine and yours are going through on daily basis. 

Lately, some of the comments I have received have been very hurtful and accusatory in nature.  I’ve committed to not censoring people’s opinions and comments so you can scroll through and find what’s been said, if you’re interested. 

I know that by putting myself out there like I do with this site, I open myself up to these types of situations and that’s to be expected.

Honestly, I haven’t run across this too often, which I think is a testament to the humanity of my readers. 

However, at times there are people who can’t wrap their heads around what my family is experiencing and so it’s easier for them and keeps their world nice and neat if they assume that our story is either exaggerated or simply a ploy to get attention.

While I can generally ignore these people, sometimes it’s hard to do that. 

Right now, when things are this bad, it’s a bit harder for me to roll with the punches, especially when the punches are so far below the belt. 

If I could make these people not only hear but understand and embrace just one thing, it would be this.  Sometimes,  in life things are messy and people suffer.  Special needs families are a perfect example of this. Quite often, we find ourselves experiencing things that even we can’t wrap our heads around.

What I’m trying to do with this site is find a way to articulate these experiences.  That’s not an easy task, especially when dealing with a complex family like mine. 

However, simply because it seems dramatic or unbelievable doesn’t mean that’s the case. 

I bet you that if the average Autism parent tried to describe what it’s like to experience their child having a full blown meltdown, the average person would have a really hard time truly understanding how impactful a meltdown can be on all involved.

One of the reasons I wanted to share the documented issues with Gavin and the behavioral problems we faced, was because I wanted to help people understand what not only what our kids went through but the impact these meltdowns have on the family.  While most of what Gavin has are (or at least were), tantrums and not meltdowns, the principle is sorta the same. 

Meltdowns are very often extremely loud and can also be violent, lead to selfinjurous behavior and can sometimes go on indefinitely.  This is not the fault of the child at all and are usually a result of sensory overload.

Tantrums can present the same way. The difference is more under the hood.  Tantrums are usually a means of manipulation.  A child wants something and can’t have, they throw a fit or have a tantrum as a means of trying to get what they want. 

Look, nothing I do is meant to make me look like some kind of hero. 

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Those of you that know me, know that in fact, I feel quite the opposite. I don’t think and never have thought that I was some kind of hero. 

I’m doing what I would think any parent would do, if presented with the situations that I’m presented with.
I’m simply a father and husband.  The only difference between me and a lot of other people in these types of situations is that I have chosen to write about my experience, that’s it.  Most of the time, these things go on behind the scenes and without the world knowing.

I don’t want people to feel sorry for me, I simply seek to raise awareness about our personal struggles in an effort to help educate others as to what families like mine may be going through. 

The fact that so many parents have reached out to me in order to share how they are so comforted by my site, tells me that I’m accomplishing my goal. 

You don’t have to like what I have to say.  You don’t even have to believe what I have say. My mission isn’t to convince you that what I’m going through is true.  Those people out there experiencing similar things can easily relate to my posts and find comfort in knowing that they aren’t alone. 

One of the things that I know so many parents like me experience, is judgment and ridicule from people who simply don’t get it. 

I don’t honestly know why people have to share their judgmental opinions.  I mean, it’s someone else’s life and has no impact on yours, whatsoever and even if it did, at the end of the day, we still have to contend with these challenges while you can return to your life.

Simply because you have never experienced something doesn’t preclude others from experiencing those things, every single day.

It doesn’t make it any less real for those of us going through it, even if you don’t believe that we are really experiencing these things. As an example, perhaps your family is perfectly healthy. That’s really awesome and I’m happy for you and yours.  That doesn’t mean that mine is.

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There are families out there, like mine,  that have to deal with these types of problems all the time, while also having to face thoughtless, heartless and judgemental people, who feel need to share their opinions of your parenting. 

It happens online, at the grocery store, at the doctors office and in the educational environment.

Families, like mine, have to make decisions inside of impossible situations. Just look at what we had to do with Gavin and moving him out of the house. You are sorely mistaken, if you think for one second that any part of that was easy or continues to be easy.

It’s nothing but pain and heartache.  Unfortunately, it’s the lesser of two evils and the only thing we could do in this particular situation that served the greatest good for the largest amount of people.

These decisions are made because we have to do what we know or at least think is best.  I can’t tell you how many times we have to pick the best of the worst options because there simply aren’t any good options to choose from.

You need to understand that we and other families like ours, are working without a net and with absolutely no instructions. Families with special needs kids, very often don’t even have the luxury of making mistakes because the costs of making a mistake are simply too high. 

With my family’s situation, I had become a stay at home Dad out of necessity.  Lizze is not capable of caring for the boys with all of her own health problems. 

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I have to be home.  I have to be the one to drive to appointments, most of which are out of town.  I have to deal with the constant, never ending flow of autism and health related struggles that my kids face.  Things as simple as making dinner is exhausting because I have to cook at least 3 different meals, often times more than  once, because of either food related allergies or sensory processing related food issues. 

Ask any parent that deals with these feeding issues.  Our kids will not eat when they are hungry.  They will go hungry before eating anything that’s sensory offensive. This is a very difficult situation that we face every meal of every day.

Don’t even get me started on the nightmare that often ensues with simply trying to help them through the sensory assault of wearing clothes. 

Too often, even well intentioned people on the outside, make comments like, just go get a job or your kids just needs a firm hand.  One of my personal favorites is, just make one thing for dinner, if they’re hungry, they’ll eat

Don’t you think if it was that simple, we would already be doing that?

I would love the ability to just go get a job.  I crave the financial security for my family and even the adult contact that would come along with working outside of the home.

Unfortunately, in my case and the cases of many others out there like me, it’s just not that simple.

I’m not asking that you believe me.  I not even asking you to understand my situation or the situations of other families like mine. I don’t need your support or even your respect. 

What I am asking is that you keep your judgemental comments to yourself. Neither I nor any other family out there needs to hear your unsolicited advice or negative comments on what you perceive is bad parenting or misbehaving kids. You can’t always take things at face value and in many cases, there is so much going on beneath the surface that you don’t understand. 

Treat people with basic human dignity and just keep your negative thoughts and comments to yourself because you have no idea what someone else is going through and how your comments may impact what may already be a very challenging situation.

Why kick someone when they are already down? Just because you feel the need to say something, doesn’t mean you should. 


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.



Permanent link to this article: http://lostandtired.com/2013/05/10/what-its-like-to-be-a-special-needs-parent/

May 08 2013

Join my Blogroll and increase traffic to your site for FREE

Welcome once again to the #Autism Blogroll for 2013

I’ve brought back my #Autism Blogroll for 2013 and we are starting fresh. If you added your link in the past, you should do so again. Every year I have to purge the database because there are simply too many links. So it’s time to add your link back. Read below for more information. 

Remember, this is open to any person, organization or business that has anything to do with #Autism, Special Needs Parenting in general or someone just wanting to help me spread Autism Awareness and my family’s story.. If you are a resource or company that provides products that benefit the special needs community, you’re encouraged to add your link as well.

blogsI like helping people, especially those touched by #Autism and their families. Blogging has been a big help to me. I thought I would try to help the Autism blogging community by providing a page to submit your Autism or special needs related website or blog. I only ask that you add a link back to my site as well. Basically, you are adding yourself to my blogroll.

The reason this is open to anyone wanting to help spread Autism Awareness and add my link to their site is because Autism Awareness takes everyone to be effective.  This means we have to reach out to as many different demographics as possible. 

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This site, lostandtired.com receives about 1,000,000 hits a month, so this might help your site gain some visibility.

When visitors come to read Lost and Tired they will also see your linked blog, via my blogroll as well. This can help to drive traffic to newer and older blogs alike. The internet is literally filled with hundreds and hundreds of millions of websites. I think #Autism and #Autism related bloggers have a very important message for the world and I want to help your voice be heard. The same goes for other #Autism and special needs related resources as well.  help to get your blog or website some visibility also.

So I added a page to my blog called Autism Blogroll as well as a new blogroll widget on my front page. Also you can see the traffic generated to and from your blog as a result of this link exchange on the Autism Blogroll.

How do I add my blog?

All you have to do is go here or simply click on the Autism Blogroll page above.

Fill out the information and submit your site.

Please be sure to use this format for entering your web address: http://www.yoursite.com, the easiest way to do this is to copy your complete web address off of your address bar and then paste it into the form.

As soon as I see the submission it will be listed and appear in my blogroll on the front page of this site. It’s that simple.

Please include my link on your site as well by copying and pasting the following code into a text widget or other location on your blog or simply add me to your blogroll:

<a href=”http://lostandtired.com” title=” Lost and Tired: Confessions of an Autism Dad” target=”_blank”>Lost and Tired</a>

This code will simply look like this once added “Lost and Tired

 

I hope you find this helpful. I think if we all work together and pool our collective resources, we can help our voices to be heard.

 

If you experience any problems adding your link to my Autism Blogroll, please don’t hesitate to Contact Me.

Permanent link to this article: http://lostandtired.com/2013/05/08/join-my-blogroll-and-increase-traffic-to-your-site-for-free/

Apr 20 2013

Introducing the Batcave for special needs Dad’s

I wanted to let you know that I setup a super secret group on the My Autism Help forums for Dad’s.

I call it the Batcave. It’s completely private and hidden from the rest of the forums. You can only see it if you are given a certain user type. Basically, no one even knows it there, unless they are given special permission.

The Batcave is open to all Dad’s of special needs kids as a place to let go and just be guys.

Who knows, maybe we can even share our feelings?  :-P
There is a great deal more freedom with the forums, plus a dedicated forum app (android only for now) that will push update and notify you of new posts and threads.

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As the Batcave grows, I will add new sections or topic areas.  Right now, it’s just a free for all.  So basically, you can talk about anything that you want to. 

My goal with this is to encourage the Dad’s of special needs children to connect.  I think as guys, we tend to feel like we have to be tough and strong for our families. While there is certainly some truth to that, it’s important to also know that it’s okay to feel. 

Sometimes it’s easier to talk in a more private setting, especially for guys.  The Batcave is that place. 

This is an open invite and I just wanted to make sure that I invited you all personally.

If your interested, please visit www.myautismhelp.com and sign up.

Once you’ve registered, send me an email, through the contact form there and I will add the permission to your account to view the Batcave. :-)

Please note that this isn’t meant to be some exclusive club.  This is meant to provide Dad’s a place to connect with other Dad’s that understand, in a more private setting.  It’s kinda like building a secret fort when we were kids. 

Mom’s, your turn is next but I need some help with a name.  Any ideas? Right now I’m thinking of something like “The Café”. 

Thoughts?


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.

Permanent link to this article: http://lostandtired.com/2013/04/20/introducing-the-batcave-for-special-needs-dads/

Apr 07 2013

Do special needs kids deserve special consideration?

Right now, in the My Autism Help Forums, we have a discussion going on about a child with Aspergers, trying to pass the swim test for the Boy Scouts of America.

This child is having a really rough time passing this test and his mother is afraid that he’s going to give up. 

It seems that the Boy Scouts are reluctant to make accommodations for him.  I don’t believe that it’s mean spirited.  I think it’s more a concern over setting a precedent.  I honestly can’t blame them because I could imagine the complaints from other parents about fairness.

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They are currently working together to try and come up with a solution.

This has got me wondering if this type of thing is preventable. I mean, should we have some type of IEP for outside of school?

I can imagine there would be both positives and negatives to that idea.  I’m not suggesting that we give a special needs child an advantage. Instead, I’m asking whether we should level the playing field?

Do you think that special needs kids deserve special consideration?

I would love to get your thoughts on  this and also your help in the My Autism Help Forums. 


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.



Permanent link to this article: http://lostandtired.com/2013/04/07/do-special-needs-kids-deserve-special-consideration/

Apr 05 2013

Confessions of #Autism Dad: The weight on my shoulders

I want to share something with all if you that I have never shared before because I am ashamed.  Perhaps your imaginations are running wild, but it’s nothing really bad.  Either way, it’s something I’m not proud of but I’m no longer going to allow this to control me.

You might remember how I push for special needs parents to take care of themselves. 

This is something that I take very seriously myself and here’s why.  I used to be a body builder and was in really, really good shape.  I would hit the gym daily and I took really good care of myself.

In my prime, I was right around 220 lbs and solid muscle.

Everything changed after  I suffered a major back injury and I eventually became a parent and then a special needs parent.

I basically let myself go.  As of last week, I tipped the scales at just over 300 lbs, the heaviest I’ve ever weighed.  Between the low self-esteem and depression, things just got out of control and it affects every aspect of my life. 

Having said that, I’m very motivated to make a change or changes, if needed. 

Lizze and I both have been exercising and we started walking again, as the weather has warmed up.  My goal is to get back up to walking 25-30/week.

I want to work on my self-discipline and gain control over my diet. 

So far this week, I’ve lost almost 3lbs and Lizze has lost 10 lbs over the past two weeks.  She’s a huge inspiration for me because she’s determined to take her life back and she’s pushing through an unbelievable amount of pain in order to do this.

It’s so important that we take care of ourselves because our kids need us. 

I wanted to invite all of you to join Sharecare.com.
Dr. Oz and he partners have put together some amazing tools to help people gain control over their health.  There’s a huge support system in place and fun ways to track your progress. 

Trust me, I know how difficult this will be.  There are so many things we have to worry about that there never seems to be time to care for ourselves. 

Please, please work with me and let’s get healthy together.  If you’re already there, maybe you have share some advice and personal experience with the rest of us. 

I will be leading by example and hopefully my journey to better health will inspire others to do the same. 

This picture was taken yesterday, right after Lizze and I finished an almost 3 mile walk in about 45 minutes.  I’m so proud of her.  :-)

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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.

Permanent link to this article: http://lostandtired.com/2013/04/05/confessions-of-autism-dad-the-weight-on-my-shoulders/

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