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

Tag Archive: chance

May 22 2012

Check out my featured post on the Akron Children’s Hospital Blog

I’m honored and honestly really excited to be featured on the Akron Children’s Hospital blog. The post is titled: #TechTuesday: Akron Children’s App Puts Vital Health Data In Palm Of Your Hand. This post is my review of their Care4Kids app that is available on both Android and iOS devices.

It’s really cool because Akron Children’s Hospital has taken such amazing care of our boys that a chance to do something like this is just awesome for me. :-)

Check out the Akron Children’d Hospital blog. Read my review and leave some feedback. I really appreciate it :-)

 

#TechTuesday: Akron Children’s App Puts Vital Health Data In Palm Of Your Hand.

Permanent link to this article: http://lostandtired.com/2012/05/22/check-out-my-featured-post-on-the-akron-childrens-hospital-blog/

Mar 19 2012

Please say a prayer for Mr. Emmett John

We just heard back from the pediatrician’s office about Emmett.  We were told today,  that on the off chance his fever hits 103°F,  we need to call in.

When they called us back a little bit ago,  they told us to give him some Tylenol on top of the Advil he had over an hour ago.  If his fever doesn’t break in the next 90 minutes,  we have to get him into the ER.

Lizze’s parents are on standby to come get the boys in the event we end up in the ER tonight. 

Please God,  just let the fever break.  He’s miserable and a trip to the hospital will be traumatizing for both and us.  The local hospitals aren’t always very Autism Aware and so things don’t always go well.
We need Autism Awareness,  even in the medical community. 

**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/03/19/please-say-a-prayer-for-mr-emmett-john/

Mar 17 2012

#Autism: What to do with down time

If your anything like me,  not that you would want to be,  you relish every break you get from the trials and tribulations of special needs parenting.  For me,  it’s not that I don’t like being with my three boys with #Autism,  because I do,  it’s just nonstop and exhausting.

A few times a year,  my wife and I find ourselves childless for a few hours. Today is one of those rare days where Emmett is with my parents and Elliott and Gavin are with Lizze’s parents. 

You would think this is a good thing and it is but it’s also a challenge in and of itself.

Perhaps that sounds weird but let me explain.  First of all,  this hardly ever happens. Sure we might be down one or two kids at times but never all three.

Secondly,  the frustrating part comes into play when trying to decide what to do with the free time. I mean the very first thing that comes to mind is simply,  going to sleep.  As special needs parents,my wife and I never get enough sleep. 

However,  at the same time,  it seems like a waste of time.

I say a waste of time because there is sooooo much that needs to be done around the house.  The only chance I have to really play catch up is these rare occasions when all the kids are gone at the same time.

Like my favorite TV character,  Adrian Monk used to say,  it’s a blessing and a curse.

That’s actually pretty darn accurate too.  It’s great to be without the kids every once in awhile,  but because it’s such a rare occurrence,  it’s tough to figure out what to do with the free time.
Should we take advantage of time and rest up in preparation for their inevitable return or spend the time cleaning the house and getting caught up on everything that has been put on hold?

Do any of you ever have this,  and I hate to use the word problem,  but problem?

**Thanks for reading**

       -Lost and Tired

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Permanent link to this article: http://lostandtired.com/2012/03/17/autism-what-to-do-with-down-time-2/

Feb 25 2012

Progress is progress, right?

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.  :-)

image

**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/2012/02/25/progress-is-progress-right/

Feb 19 2012

The road ahead

Tomorrow is a big day for the Lost and Tired family. 

Gavin will endure his 8th antibody infusion in the morning.  Lizze’s father is kind enough to sit with Gavin tomorrow because Lizze and I can’t be there.  Gavin’s pretty excited that Grandpa is going to take him.

While Gavin is receiving the antibodies he needs because he has no immune system of his own,  Lizze and I will be with Emmett.

Emmett has his first appointment with the Rheumatologist in the morning. 

He was referred there by his immunologist because she is concerned he may have Juvenile Rheumatoid Arthritis.  I think that Lizze and I both share this concern because Emmett complains about his joints and they are often inflamed and hot to the touch.

There is also a chance that this could explain,  to at least some degree,  his fevers.

Lizze and I both want to be there for this appointment and Gavin is okay with that.

Lizze isn’t really in good shape and attending this appointment will likely cause her even more pain and discomfort.

While I offered to go alone,  it would take a great deal more than pain to keep her from being with her kids at an appointment like this.  I don’t really stand a chance of convincing her to take care of herself and stay back. 

Hopefully,  tomorrow will go off without a hitch and all will be ok.  We have a ton of other appointments this week so it would be nice to start off on the right foot.  :-)

**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/2012/02/19/the-road-ahead/

Jan 21 2012

In their own words…

On January 19,2012 our van was stolen, right in front of us. The boys we’re watching out the front window as it happened and I was literally 10-15 feet away. They have been profoundly affected by this event, Gavin more so than the others.

He spent a lot of time crying and hardly spoke a word the entire day. Elliott is much more anxious than usual and Emmett wants his black car seat back. I do my best to reassure them and at this point, that’s all I can do.

Lizze and I are obviously upset and stressed out about this situation because if the van gets totaled out, we’ll be left with nothing. To say that this is problem is like calling the ocean a puddle. We have an average of 14 appointments a week -not including back and forth to school- between therapies and doctors.

Without our van, we’re pretty much dead in the water.

I really feel it’s important to have an open dialogue with the boys about what happened. They’re worried and don’t understand why this happened and what we are going to do.

Gavin, as you will see in the video, thinks that we did something wrong. He has been asking “what we did wrong” and “why did they do this to us”.

I wanted to give the boys a chance to say what they were feeling and ask their questions and even deliver a message to anyone thinking about doing this to someone else. They need to know that it’s okay to feel whatever they feel and it’s important to get these feelings out so we can talk about them.

As always, but especially now, I’m extremely proud of my boys.

This is their voice.

YouTube Preview Image

 

Permanent link to this article: http://lostandtired.com/2012/01/21/in-their-own-words/

Dec 13 2011

The best of intentions

The best of intentions

Every day I set out to do better… Every day I have a list of things that need to be done. Things like,  laundry,dishes and random other household chores that always seem to get pushed off to another day.

Truth be told,  I’m bothered by my inability to get these things done. 

Every day that I wake up and see these things still needing to be done adds a few more pounds to the ever increasing load I find myself carrying from day to day. 

I’m also aware that there is a tendency to erroneously associate ones parenting ability with the condition of the house.  I find myself on many occasions,  feeling guilty that I can’t seem to ever get anything done. I feel like my kids deserve a clean house and I erroneously associate their happiness with the things that really don’t seem to matter them..

I have been really stressed out lately over things like the house,  problems in our neighborhood and even the repairs to our van,  that is once again in the shop.

The problem is that I always seem to get pulled away from the task at hand by one or more of my 3 boys on the Autism Spectrum.  In truth,  this is frustrating at times because I’m not built to live in chaos but instead, I prefer more of an organized lifestyle.  I’m not referring to an OCD type thing,  just a better managed and more comfortable environment,  where things get put away when they are not being used.

Having said that,  something has happened today that caused me to remember what I so often seem to forget and I thought it might be beneficial to you, so I thought I would share.

I woke up this morning and was in a rush to get the boys dressed and off to school.  I’m exhausted from everything and so I was more intensely bothered by the condition of my surroundings.

After the boys were off to school and we were settled in for a bit,  I focused on trying to relax. 

I was experiencing more frustration because we double booked ourselves today and that drives me crazy.  So I had to drop Lizze off and then take Emmett to therapy.

This is when it happened.  As I’m driving,  battling the insanity that is the holiday traffic I heard something that caused a very sharp and rapid change in my perspective. 

It started out faint,  like a whisper and then build up. It was Emmett and he was singing the alphabet. 

Sure, I heard him sing it before but for some reason,  it was different this afternoon.  As I listened to him singing,  he switched between counting and the alphabet.  I caught myself singing along with him.

Then it hit,  Emmett was singing…. More than that,  he was talking.  I was actually singing the alphabet and counting with my 3 year old little boy that could speak this time last year.

At that point it hit me.

With all the things I have mistakenly placed value on that don’t get done around the house,  something truly miraculous and much more important did.  My son is talking,  heck,  my son is singing. 

While it’s true,  the house is usually a mess and there are almost always dishes and laundry patiently waiting to get done,  those aren’t the things that matter.

It took something as simple as Emmett singing the alphabet to help.me realize just how much we have actually accomplished and how far we have traveled,  with our little ones, on this journey through life with Autism. 

I’ll probably still find myself frustrated when constantly getting pulled away from the things I need to accomplish.  However,  what I’m getting pulled away to do is often more important than what I was already doing.

In the end,  when I’m looking back on my life, I will regret more,  the things I didn’t do,  more than the ones I did. 

Simply put,  if I don’t allow myself be pulled away at times, from the everyday things in life by my children seeking attention,  there will come a point in life that I’ll regret it.  A point where I would do anything, say anything, for a chance to be pulled away again.. 

Food for thought…….

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Permanent link to this article: http://lostandtired.com/2011/12/13/the-best-of-intentions/

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