Tuesday, October 16, 2012

What "Progress" Looks Like On My Corner Of Autism Avenue






(originally written & published on October 16, 2012)



Sometimes we are so focused and wrapped up with this month's autism crisis (Seizures, Aggression at school, biting, etc) that we don't even notice the progress that's happening.

No, to all my parents of high functioning kids, this will not be the progress that you all are used to.  And even for my low functioning friends, this really couldn't be considered progress to many of you.

No, my 9 year old son Kyle didn't start tying his shoe laces.  No, he didn't start communicating with his Ipad.  His point is still too crappy for that.  Forget about speech, we haven't made any real progress in that arena in years.  I kinda put the speech hopes in my back pocket for now.

No, the kinda progress that I'm talking about is probably pretty unique to Kyle's situation.  In fact you probably can't even call it progress.  Maybe you can call it maturity?  Or maybe he just isn't as destructive and compulsive as he once was.

This all dawned on me a few days ago when I was in our downstairs bathroom.  And I noticed that a bottle of hand-soap was out on the sink.  And my first reaction was to put it away and to scold the wife ("Someone left the hand-soap out...") in an accusatory tone.

But then I realized that its been out for a couple of days now...maybe even a week.




And that is huge because Kyle didn't eat any.  Kyle used to eat/drink the bottles of hand-soap if we left them out.  So our bathrooms, our downstairs bathroom especially cuz that one he has independent access to, had become barren of all soaps, and stuff in the medicine cabinets, etc.

Then when I thought about the hand-soap, all the other signs of progress came to me.

Look, we have toilet paper out in the bathroom, where it's supposed to be!  Kyle used to unroll it and rip it into little pieces obsessively.

And look we still have 2 cordless phones lying around in the living room!  And they still work!  The batteries are still in and the backs are still on and not all duct taped into place!

And all our remote controls are still intact!  They still have batteries in them and are not duct taped either!

The phones & remotes used to look like this...



And now that I think about it... he doesn't really spit, or play with his saliva anymore.  That was the grossest "stim" that my son used to have.  Taking some saliva from his mouth and gently placing it with his thumb and index finger onto different surfaces around the house.  There used to be little disgusting puddles everywhere!

And he doesn't do something else gross that he used to do.  He doesn't backwash into his bottle of water anymore.  You could always tell which one was the king's cuz it was cloudy with bits of food in it.  That is gone!

So can all that be called "progress"?  Or is it a sign of "maturity"?  Or is "Klonopin" just a miracle drug and it should get all the credit, and if we ever take him off of it (god forbid) all this progress will regress?

Who the F knows?

All I know is, this is the type of progress that happens in our house.  The kind that creeps up on you while you are dealing with some other crisis, and then it jumps out at you and you're like, "hey my kid isn't as destructive or as gross or as obsessive as he used to be!"

That's not the type of progress that I signed up for... but it's the type of progress that we've got right now.  So I guess it's worth noting and somewhat celebrating.

THE END!

----------------------------------



If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




042214

36 comments:

  1. Funny the same thing happens here, all of a sudden we realize hey, Jake hasn't been filling up cups with water and spilling it on the floor, or taking the milk out of the fridge and spilling it on the floor...etc.etc. Always takes a while after the behavior stops that we finally realize it's gone.

    ReplyDelete
  2. I know the progress looks tiny or insignificant to most, but I get it. Even the tiniest progress can make a significant improvement in your daily life, one less thing to stress about. Believe me, I get it. Celebrate those victories!

    ReplyDelete
  3. its so important to celebrate all the progress our kids make, big or small. and no matter how small, its as huge to us as average kids acing their exams or graduating or whatever, probably more so!
    congrats its awesome that kyle has made improvement :) x

    ReplyDelete
  4. Love it. This is the kind of progress we experience, too. For instance, we are so excited that our son is placing his cup right side up on the table. It's a straw sipper cup, not an open cup, but he's placing it on the table. Our son goes after toiletries, too, especially other people's toothbrushes. This is kind of a recurring problem, but not a daily issue. He will try to eat bars of soap, and the other day he ate a piece of a wax #3 birthday candle. He's 5, and he has made slow progress in some areas, but he is very severe. So, I know the progress you are talking about! :)

    ReplyDelete
  5. My son did all those things. We also were able to bring up our area rug from the garage back in the living room. I was having company and wanted it back up JUST FOR THE DAY I told my husband. I told him we will be there so Ronan won't pick as much or bite the rug. Well its been a week and the rug is still up in the living room : ). Still does back wash with water bottle though LOL!! One stim at a time ; )

    ReplyDelete
  6. Always Thank you...for sharing...my daughters was drinking bath water...and very soapy water at that...have changed with with mulit showers. Thank You Autism Daddy..for allowing and sharing the small stuff because we both nothing is really small

    ReplyDelete
  7. That deffo progress. My son is still only a toddler, so maybe he'll grow out of all that anyway one day - we havent a clue where on the spectrum he is as they wont tel us yet. But I live for the day my remotes are safe, my bathroom doesnt need a barricade across the door and my DVD's can live in the lounge again. My son's nickname is "Owen the Destructor". I love him unconditionally, but he tears the house apart and it looks like a pikey den!!! So I call that massive progress in an ASD household! Way to go! x Celebrate! x

    ReplyDelete
  8. Hooray for Kyle! I don't know if any of these things matter to him, but this is progress. My son used to do nearly all these things and many more you didn't mention, but in time stopped. He's fifteen now, and we recently stopped locking the basement door at night. He used to go down every night between midnight and 2 am and trash the basement. We put a lock on the basement door, and anything we didn't want him to destroy had to be kept there. Now when he gets up in the night, he quietly plays his Game Boy until morning when the rest of us start getting up.

    ReplyDelete
  9. Ive been reading your blog for a few months now. My son wa just diagnosed with autism early this month , but we had been going through all ofthe drs for a while and suspected autism all along. I am constantly posting the little achievements and no one every "gets " it. I just wanted to tell you that , I think you are an amazing father for the dedication you have to helping the King and for sharing all of the ups and downs of life with us through humor, anger, bitterness, joy, and every other emotional possible. I know this is sometimes harder for dads and I think hat is part of why your blog is so inspiring to me. Im going to share it with the hubs and see if I can get him hooked as well. Congrats on the progress !

    Mandy Sims

    ReplyDelete
  10. Wonder if the anti seizure meds might be helping.Lots of autistic kids have hidden seizures than seem to promote such behavior.

    ReplyDelete
  11. I also get it, big time.

    ReplyDelete
  12. I get it! I've been dispairing just lately about just that kind of stuff. Feeling like all I ever do is clean up, pick up, repair, workaround etc DS is only 6 so maybe he'll make these kind of improvements too one day :-) Michelle

    ReplyDelete
  13. Yay, Kyle! That a boy! Keep up the good work, Kiddo!!!

    ReplyDelete
  14. Liam has the exact same stims!! He's almost 6 and it is getting better. But he still drinks the shampoo if it's out, tears toilet paper and napkins into tiny bits and spit puddles? Oh yeah, we know that one all too well.

    I would definitely Kyle's progress significant! Anything that gets you back to a little more normalcy is huge. Celebrate it!

    ReplyDelete
  15. That is awesome progress. I loved the picture of the soap, b/c we have the exact same one (is it from Trader Joe's?) Our progress w/ the soap that you helped me to notice is that my son isn't pouring it out anymore!

    ReplyDelete
  16. It is soooo important for us, (parents of ASD kids,) to stop and reflect on how far our kids have come. I often find myself having a sudden epiphany and asking my husband, "Hey, remember when we used to have to do this or that?"
    Or
    . "Remember when we thought we'd NEVER be able to do this or that?"
    These milestones (that all the other parents of NT kids take for granted,) tend to sneak up on us while we're busy keeping all the plates spinning.

    ReplyDelete
  17. Dude, progress is progress! I say this b/c I have been walking around the house picking up shreds of tissues, toilet paper, dryer sheets, my older sons school papers for weeks now. That is my younger lower functioning son doing that. This morning the big progress I noticed in my older son was that when he pulled his pajama pants down he managed to keep his underwear on! whoot whoot! Every step is a step!!!!

    ReplyDelete
  18. That is HUGE!!!! Got teary eyed reading it! I have a high functioning guy, but still little progress is celebrated... the things you put in your blog are HUGE!!! How wonderful!!! Congrats Kyle!

    ReplyDelete
  19. That is progress, and definitely worth celebrating! We rejoice any time we can get through a week with no feces wiped all over the bathroom, or have the living room carpet still looking halfway clean for a whole day after vacuuming, or get to the end of a day and realize there have been no major meltdowns. In life (especially with neuroAusome kiddos), joy can be readily found in the mundane, if we only choose to focus on what goes right instead of what went wrong. Thanks for sharing your excitement and reminding me to keep an eye out for relatively small accomplishments!

    ReplyDelete
  20. So happy to hear about the progress. As a grandmother of an autistic child I get it. One day it dawns on you, "Oh, he stopped doing that two weeks ago....". It's wonderful to find small amounts of progress here and there. Bless you for loving your son so much and sharing with the world!

    ReplyDelete
  21. Its the small things or really they are the BIG things in our world with our kids. Mine has just starting to dress herself (pants or shorts only) but its a start. Also starting to write her name! Her teacher cried and I think I just sat there in shock. GO Kyle. Its huge progress AD and AM :)

    ReplyDelete
  22. It's great to hear about the progress your son is making! It's so important to capture the little steps and improvements =) I've really enjoyed reading about your experiences. Thanks for being so open. I've recently started a blog (www.behaviorvantagepoint.com) for parents and providers of children with autism. I hope you'll follow along.

    - Johanna

    ReplyDelete
  23. This post mad me laugh and cry at the same time. I can so relate with your initial reaction of asking in an accusatory tone "Who left the hand soap out?". We have to celebrate these small achievements even though the daily chaos comes with Autism makes it hard. It is great to know we are not the only ones battling the issues with hand soap.

    ReplyDelete
  24. This is wonderful! I love those moments (in the middle of all the insanity) when I have a minute to reflect on true progress. Yay for you on the end of spitting. We go in and out of that particular stim and it truly is a tough one to let roll off your back. But we are celebrating that my son doesn't elope like he used to (almost never) and that he is learning to ask questions. I think we should all have some wine to celebrate. Or Jim Beam. LOL.

    ReplyDelete
  25. I totally get it. It isn't strange that all of the sudden your like "Hey aren't you gonna eat the soap ?" There are so many things going on at once and sometimes it feels like your going through the motions on overdrive or auto pilot. I just realized at 2:30am that Josh hadn't thrown up in the middle of the night for a really long time. He kinda made up for it last night but it's been a while. I also noticed that he's not chewing gum all the time, only when he takes a bath. I know that sounds weird but he controls his gag reflex by chewing gum. I also noticed he's not watching Fresh Beat Band and Dora. It's Passtime's (drag racing)or any auto show on Channel 83(fios) I noticed because I'm not singing along. Of course I than wonder, what's wrong, what's with this, is this part of a new phase or "growing up". I also remind myself not to let my guard down. He used to eat the cat food and dog food, I still have to keep an watchful eye! :)

    ReplyDelete
  26. even with our high functioning son we get excited about those kind of progresses! those things that you worry will stop him functioning in society even if he passes high school! the poo smearing (everywhere!!!) is the best one to have left behind!
    Kristy

    ReplyDelete
  27. I know what you mean...I used to hold little victories back but now I tell people... it keeps me hopeful and appreciative.

    ReplyDelete
  28. Seizures are a common co-morbid occurrence with autism. In our case, Edith started with febrile seizures, then at 18 months contracted encephalitis and had a big seizure and was then referred to a neurologist. And then, Autism showed up. It might have been there before, but we didn't recognize the signs. It wasn't until 3 years later that we received the diagnosis of autism. I had never heard of it. Research got me up to speed. Now, Edith is 12, has entered puberty and thank God, her seizures are rare and short. But for those first few years of her life we were in and out of the hospital with seizures that lasted well over an hour.

    ReplyDelete
  29. This comment has been removed by the author.

    ReplyDelete
  30. It's the small things that sometimes mean so much to our kids! Thanks for sharing!

    ReplyDelete
  31. it IS progress, no matter how slowly it comes. There IS hope..and miracles happen. Do not give credit to the drugs...

    ReplyDelete
  32. I get it! Fantastic changes!! Sometimes the iep meetings help me realize things that I don't notice. They were trying to teach my 15 year old to say mom, I said he doesn't say mmmm sound, right then he did!! A small accomplishment I hadn't noticed!!

    ReplyDelete
  33. Every one of those sounds like a big accomplishment. Grouped together sounds like a minor miracle. Congrats to you, momma, and the king!

    ReplyDelete
  34. With us it's almost as if our almost-4-year-old's increasing destructiveness is progress. It's hard to just accept it when every single glass in the house has been dashed to the tile, every ceramic plate and mug cracked, chipped and broken, but.... You start to realize that he's becoming more AWARE of where Mommy is, and when he can get away with stealing my beers from the fridge and shattering them against the block wall, or knowing when the bathroom has just been used and might be unlocked, then dragging the plunger outside and chewing on it.

    Yes it's gross, yes it's aggravating, yes it's expensive... but it also indicates that he's taking the time and effort to "come into our world" so much more. And I should be thankful for it.

    ReplyDelete
  35. Tears Roll Down My Face,,, I So Know

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...

© 2011-2016 Autism Daddy / Frank Campagna. All Rights Reserved