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May 06 2012

Gunshots and Burglaries

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Autism

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May 6, 2012

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Apparently, our neighbors house was broken into last night. That’s really nice and makes me feel really safe.

My parents just stopped by to bring Gavin and Elliott home after hanging out with them for the day. As we were standing on the front porch talking for a few minutes,  there was 3 gunshots.

This neighborhood has gone to hell in a hand basket.

It’s so hard to get my family out of here for several reasons. For one thing, we’re stretched very thin financially.  The other issue is Gavin’s health.  We are just learning about where his health is going and I have no idea how we are going to weather this storm as it is.

The other issue revolves around actually finding a home. Trying to find a house that will work for 3 special needs kids and a wife that can’t use the stairs,  is no easy task.

There are so many things to consider when trying to move a special needs family. We need to consider the layout of the house as well as the neighborhood itself.

We need a safe and understanding neighborhood in order to allow my family what they need to grow,  safe,  happy and healthy.

That is so much more easily said than done.

**Thanks for reading**

       -Lost and Tired

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Mar 02 2012

Creative Solutions

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Autism

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March 2, 2012

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Elliott’s 6th birthday is this Sunday. As you may remember,  he has his EEG scheduled for this Monday.  For whatever reason,  Elliott is stressing out because he doesn’t want to have his EEG the day after his birthday.

I don’t know what the issue really is but my guess is that it has more to do with him not wanting the EEG and less about having it the day after his birthday.

He was begging me to reschedule the EEG for another day.  However,  that’s not really an option as this test is important. So I offered him another option.  I told him that we could move his birthday instead.

He liked that idea and so far that seems to be working to reduce his anxiety.

We will be celebrating Elliott’s birthday tonight,  instead of Sunday. As a special needs parent,  sometimes I have to come up with creative solutions to the problems I’m faces with.  This is just one of those times.

Please feel free to wish Elliott a happy birthday today.  He’ll love to read them when he gets home.  :-)

Happy Birthday Elliott :-)

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Feb 27 2012

#Autism and Anxiety

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Autism

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February 27, 2012

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Elliott’s anxiety is absolutely through the roof.  He’s been crying all morning because he doesn’t want to go to school.

These are fake tears either,  he actually in distress and I’m not sure what we can do to help him.

I know he needs medication but the last time didn’t go very well at all. We’re back to see the psychiatrist on Wednesday morning and hopefully walk away with a better solution.

The one thing that’s always consistent with Elliott and this anxiety issue is that he says things like,  it’s going to take to long,  I can’t wait that long or it takes forever.

When he says these things,  he’s not coming across to me as simple impatient.  This seems like he is absolutely in distress.

Do any of you folks experience anything like this?  If any of my adult friends with Autism could provide me with insight,  I would be eternally grateful.

Thank you :-)

**Thanks for reading**

       -Lost and Tired

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

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Feb 25 2012

Inside voices please

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Autism

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February 25, 2012

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Sweet merciful Mary are my kids loud. We have had their hearing tested and that’s not the problem.  I guess it’s like a regulatory thing.

I’m constantly saying,  “inside voices please”.  It doesn’t seem to make any lasting impression. 

Right now,  Emmett is probably the loudest,  followed by Elliott in second and Gavin a close third. Emmett will stand right in front of you and screaming what he’s trying to say. I’ll literally be 2 or 3 feet away when he does this.

It’s not like we don’t respond to them when they talk.  Sometimes why they need to speak in such a loud manner is a bit of a mystery.  Having said that,  it’s a mystery that I need to solve because all the noise is driving me a bit crazy.

Is this maybe a sensory processing issue?  Maybe they don’t realize just how loud they are being.  I can definitely see them not being aware of the volume of their voice.

Either way,  it’s a problem that we need to find a solution to.  I’m thinking of putting up some visual reminders of how loud they are supposed to be while in the house.

Visual reminders work well with my kids, most of the time. I just need to make it as simple as possible,  so that all three of the boys will understand what the signs mean. 

Anyone else have a similar issue with noise?  To me,  I would think they would be driving themselves crazy with all the noise.

Thoughts?

**Thanks for reading**

       -Lost and Tired

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

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Feb 16 2012

Questions about Juvenile Rheumatoid Arthritis

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Autism

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February 16, 2012

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Monday is the long awaited trip to the Rheumatologist for Emmett. Emmett was referred a little while ago by his Immunologist. As many of you know, Emmett has been diagnosed with Autism as well as a fever disorder. Basically, Emmett runs a fever about every 2 or three weeks. The fevers are accompanied by a mouth full of huge -and I mean that literally, they are huge- cold sores.

This lasts about a week or so. He had surgery last year to remove his tonsils and adenoids because they are thought to be linked to this disorder. While it did help, it hasn’t eliminated the issue. In some cases it has even gotten worse.

Anyway, at his last followup with the Immunologist at Akron Children’s Hospital, Emmett was referred to the Rheumatologist. Immunology believes he might have Juvenile Rheumatoid Arthritis. 

Emmett has been complaining about his joints and his hands frequently become very, very warm and do some of his other joints.

We have been waiting for this appointment so we can, hopefully, get some answers. All we want to do is get him any help he may need. Because of his speech and language delays, he is very difficult to understand. It’s difficult to know what he needs or what is wrong.

My question to all of you is this. Have any of you had to deal with Juvenile Rheumatoid Arthritis?  Are there any specific questions I should be sure to ask? Are there any treatments that we should avoid and why?

I’m just looking for anyone to share any experience they may have with this disorder.

 

Thank you.

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Permanent link to this article: http://lostandtired.com/2012/02/16/questions-about-juvenile-rheumatoid-arthritis/

Feb 15 2012

How to kill a toilet

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Autism

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February 15, 2012

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You might remember,  earlier this week we had another issue with the toilet in our only bathroom.

A quick recap for those who missed out on the fun earlier this week.

Basically,  Emmett flushed several,  empty toilet paper rolls down the toilet. Now,  in his defense,  they had been collecting and proved to be a temptation that he simply couldn’t resist.

Anyway, this is the 2nd or 3rd time this has happened in the last few months.

I spent a good portion of the day plunging the crappie out of that toilet.  Oh..look.. I made a funny :-)

The plunger actually broke, so Elliott -who was still manic at the time- and I had to go buy a new one.  Elliott at the store is tough on a good day.  However,  Elliott at the store while manic because of a bad reaction to Zoloft…. Well,  I’ll leave that to your imagination.

But I digress…..

Back to the point. 

Did you know that not all plungers work on all toilets?  I found that out the hard way. The replacement plunger I bought didn’t work.

I ended up having to use the old,  broken plunger.  It actually worked after awhile.  I managed to clear out most of. The cardboard from the back of the toilet.

Sadly,  the damage had already been done.

When we flush the toilet now,  it sounds like it’s gasping for air.  It no longer rains on the parade, if you follow my drift.

I think whatever else he flushed is plugged up somewhere and it’s stopping the water from flowing through the system properly.

I’ll give you an example.  Don’t worry,  it will be a clean example.

Gavin blew his nose today and dropped the tissue into the toilet and flushed it.  While the water in the toilet flushed away the tissue remained.  There is simply no water coming down to whoosh the tissue away,  so it just sticks to the side of the bowel.

I’m afraid that our toilet,  when less than a year old,  is in its final days.

RIP dear friend.  As my good friend. Hank Hill would say,  you provided us with 12 months of reliable service.

You will be missed.  Unfortunately,  I can’t pull the plug just yet,  I need to interview for a replacement first. 

**Thanks for reading**

       -Lost and Tired

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Feb 10 2012

Autism and the depressed special needs parent

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Autism

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February 10, 2012

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I write about this many times ready but I want to touch on this again. The reason is that I really think that it’s important for people to see an accurate picture of what life as a special needs parent can be like.

There are many,  many special needs parents out there,  each with their own unique set of circumstances.

I’m not speaking for anyone but myself here. 

Life in the Lost and Tired house is difficult on any given day.  Without sounding cliche,  any day that we physically survive, is considered a good day.

So far we have survived the bad days as well but the bad days are really bad. 

Now bad doesn’t mean the same for everyone,  so let me clarify.  A bad day is a day like today,  for example.

Today was extremely difficult and very overwhelming.  To put it bluntly,  Elliott’s off his rocker. This medication issue,  has made Elliott freaking crazy.  I mean that in the most loving but realistic way.

He is driving me freaking crazy… I love him completely but goddamn if he is testing the limits of my patience.

It’s not his fault and hopefully he will be getting better soon.

At the same time as Elliott’s going through this,  Lizze is in the middle of a flare and spent most of the day in bed. 

Part of the reason for her sleeping is the fact that her meds had to be increased to control her tremors.  They are getting so bad that she has a hard time doing anything that requires a remotely steady have.

Gavin is having problems at school now. Tonight, he had a huge and I mean huge meltdown tonight. He seems to have a very low threshold for everything right now. It doesn’t take anything to set him off.

Emmett is just pushing everyone’s buttons. It’s like pouring gasoline on a fire.

This is what I consider one of the bad days.
I can’t even imagine coping with this if I hadn’t gone on antidepressants.  I have been battling with depression for a few years now and as things get more challenging, my depression becomes all that much more important to manage.

If my depression isn’t managed I can’t take care of my family.  I have a really hard time even getting out of bed.  I also crumble under all the pressure of trying to raise 3 special needs kids. 

I will say that there aren’t any medications available that will help if I have many more days like today.

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