Tuesday, April 15, 2014

Progress = Kyle Off From School, Wife & I Not Freaking Out!

Sometimes you don't see the progress in your kid until you look at yourself and how you're reacting to certain situations...

Like...

The king is off from school this week.  And the wife and I are not freaking out!

That's huge progress for us!

It's not fun to admit it but the wife and I used to DREAD weeks off from school. 

Kyle used to be a lot harder to handle. Spending the day with him was not easy. He was constantly in motion and really wasn't as related as he is today. 

This was way back before he was on meds and before wifey and I were on meds. 

Our life was a lot more frantic. One of the
first things I posted on my Autism Daddy Facebook page 3 years ago was a letter wifey wrote to the Medicaid office explaining why we had an "exteme case" and it really dives in to the way Kyle used to be. 

It is called "Welcome To The Jungle -- a window into our lives raising Kyle"

I beg you to read it before going any further with this post.  

 You can read it here.

We will wait for you. 

(twiddling thumbs and humming)

Welcome back.  Did you read it?  

Did it give you a sense of how excruciating our lives were back then?

So when a week off from school would come up wifey would start asking me a few weeks out..."any chance you could take off a day or two the week he's off"

And sometimes I'd take a day here or there but, honestly that's the last thing I wanted to do.  So sometimes I'd say I was too busy at work. 

See I'm not perfect!  But a day in our lives back then was a true high wire act. 

I thought of another post that really spells out what our lives were like back then. 

It's called "50 Things Overheard At My Autism Household On A Typical Weekend"

And again I'm not trying to boss you around :) but I implore you to read it before we move on.  You can read it here

We will wait for you again. 

(humming the Jeopardy theme song)


Welcome back. Did you read it?

So basically our days back then consisted of playing goalie. And keeping him from eating soap, or hurting himself or sometimes us. 

Thinking back he was a lot less related back then.   And he couldn't sit still. The idea of him sitting on the couch and watching a 30 minute show or sitting in his playroom nook "reading" a book for 5+ minutes (the way he does now) was unheard of. 

He was always on the go. Hell, we had to strap him in his seat at the table just to get him to eat. 

But something's changed over the past 3 years. It wasn't a quick change so you barely notice it's happening. 

But over the past 3 years the king has slowed down. He's matured.  And aside from the breath holding a lot of the things I wrote about in those two old posts are either completely gone...or aren't nearly as severe.  

Basically, he can be a real fun guy to be around a lot of the time...not fun to admit, but that wasn't always the case...

Is it maturity?  Is it puberty?  Did the seizures / epilepsy (which started in May 2012) help in some weird way?  Is it the combo of meds he's on?    

I can't answer any of those questions...but basically he just seems more comfortable being in his own skin.  He seems happier.  He communicates a bit better... he gets across his wants and needs better....he'll take us by the hand and lead us to his wants...  

It finally feels sometimes like we're raising a happy toddler instead of playing goalie and protecting this little weird Tasmanian Devil that used to terrorize our house.



And I can't put my finger on when exactly things took a turn for the better.  

All I know is that the king is off from school this week.  And as I was leaving for work yesterday wifey was getting Kyle dressed to go to the movies and then to the park/ playground afterwards...  and I was jealous.  

I wished I could have taken off from work to hang out with them. 

And that shows huge progress...in me!

But it truly shows how easy going & fun it has been hanging with Kyle these days...

Did they have a glorious time at the movies & at the park? 

Well wifey reported that it was far from perfect and was quite torturous at times...especially with the breath holding plus he tried to throw his sneaker in the pond at the park :-)

But it was better than it was a few years back...

So all of this to say, that he is still severely, classically autistic...and while he hasn't made much academic progress over these past few years...behaviorally he has mellowed out considerably... for whatever reason... 

And again...it's the kinda stuff that I barely noticed...until I had that "aha moment" where I realized that I'm jealous of the day that wifey & Kyle had planned.

And I'm sure the other shoe will drop soon and we'll have another new crisis or a new behavior that rears its ugly head...and there will probably be a return of the Tasmanian Devil version of Kyle at some point...I'm not naive enough to think it won't...but for now we're gonna ride the hot hand and enjoy the happy almost 11 year old toddler we have right now...

Anyway... that's all I got...  Hope y'all enjoyed this one...

THE END...

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13 comments:

  1. Awesome! I have two boys on the spectrum (high functioning autistic ) and they a complete opposites to where they were a few years ago. It is truly uplifting to hear the progress in all of you! Thanks for sharing!

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  2. Wonderful! I have a son on the spectrum and he is growing and getting better each day with out me noticing it......the wonder of small and sweet progress for all ASD parents. Hang in there the king with surprise you AD!

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  3. Wonderful! can relate...my six year old nonverbal autistic son use to make weekends quite unbearable.... and summers complete hell (love him to death though) ...between feces murals, screaming fits and tantrums that could last for hours (sometimes days) It was definitely the most distressing time of my life… he is still nonverbal… but I must say a degree of maturity has blessed him with some patience, less anger more understanding…. Enough to even let us think about having another child………….. (maybe)

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  4. This post couldn't have come at a better time for me. My severely autistic non-verbal son had a two week spring break a few weeks ago. He is 9 and by the end of the two weeks I was severely depressed. When your wife writes about your son in her letter it is almost as if she is describing our son. I can only hope that one day our son will make the same progress, but it was just nice to know that someone has been through the same things. It seems like most of the autistic kids in our area are more high functioning or at the very least more mature. It is hard to find someone who understands exactly what you are going through. Thanks for sharing.

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  5. Hi. The story of breathholding reminds me of Pitt Hopkins syndrome. Does the king have any resemblance to this kid ? http://rarediseasecycling.org/wp-content/uploads/2013/12/CausesPittHopkinsChristopher.png

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  6. My 12 yr old kid use to be ultra aggressive Everyone in my house had some sort of mark on their body from my son and I use to spend countless dollars on wall patching. I dreaded school vacations. In the past couple of years I now look forward them. Like you not sure if it's meds, age or both.

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  7. WoW. I understand what it is like dealing with aging parents. My Dad is in an adult care facility with senile dementia. It has been hard to watch him degrade over time. My MOM worries me as well. While she lives independently, she is still 50 miles away. Last week she fell in a parking lot. I just absolutely froze, I didn't know what to do. Fortunately some good samaritans came by, and we helped her to her feet.

    I find solace in your blog. I have Aspergers. Keep blogging. It helps all of us. In my prayers.

    Wayno

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  8. Our son has made huge progress this year as well. I think it is easier on everyone around him in his daily life now that he is finally potty trained and having fewer meltdowns. I think maturity has played a role but his new meds changed many behaviors, a few of which were almost immediate. Not only is he more comfortable but his entire group of family and friends is also more comfortable around him. Everyone loves him but they all handle him differently. I generally bypass most of the blogs I have seen but I am intrigued to hear more about your son and your life together. Many blessings.

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  9. This is the most beautiful post that you've ever published, autism daddy! Woooo hooo! Enjoy your precious child. Many many blessings to you and your family

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  10. Great post, as always! My 4yo non-verbal extremely autistic daughter DID throw her shoe in the effing koi pond when we were at a pumpkin patch this past fall. Awesome. She was then beyond pissed at how bad the straw hurt her bare feet. For a few minutes I did look at the shoe and try to figure out how to MacGyver it out, then decided f*ck it, time to go home. So, I feel you and your wife! Not cool when we have to add one more thing to the radar while we're out..."not hucking shoes in the effing pond" should not be one of the daily goals, but here we are! Thanks for sharing, made me laugh at my own memories!!! SO happy he is more fun and getting easier, you give me hope!

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  11. I didn't see in your list of possible reasons for the improvement the amazing hard work you and your wife have put into helping Kyle, as well as Kyle's own work. I believe it is truly a team effort from everyone and you all need to be praised! Congratulations! :-)

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  12. Sometimes I think the kids make progress only when we finally resign ourselves to the possibility that they may not, and come to some sort of peace about it. Almost like they are little spiritual gurus or something. This week has been a rough week in my house and I thank you for lifting my spirits a little.

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  13. I can totally relate to you here! I have always DREADED school breaks but Sunday night, after our King finally fell asleep, I had a few moments to reflect on the past two weeks of Spring Break. Going into it I was informed be my husband that he would be working EVERYDAY of the two weeks. That is all ALL 16 DAYS. Leaving a 6:30 am and returning at 7 to 8pm. This situation would have normally sent me into a downward spiral of despair. But it didn't. WHAT!?! I knew that it would be hard but I was okay. Much to my happiness, we had a great time together! We had our moments, of course, but the general feeling I had, when I dragged my exhausted butt to bed that night was happiness and a deep sense that we had bonded in those two weeks. He has matured and I have too. :)

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