Now Reading: Kyle's Last Few Weeks – 3 Huge Steps Forward & 2 Weird Steps Back

Kyle's Last Few Weeks – 3 Huge Steps Forward & 2 Weird Steps Back

Mon 8:17pm — I’m in bed with the king as he drifts off to sleep watching the sesame DVD  “Sleepytime songs & stories” for the 2097th time. 
And I’m thinking about the last few days of the holiday break and his first day of school today. 
And it can be summed up with that old saying “two steps forward and one step back”
That’s pretty the story of a lot of kids with autism. 
Although with Kyle and his brand of autism (and epilepsy) it’a usually more like 
2 step forward, 5 steps back. It’s been that way throughout his life. 
But the last few days of the break and today’s reports from school show that this months version (so far) is 
3 Huge Steps forward and   2 steps back (one huge & one weird)
Here’s the 3 steps forward:
1) No seizures in school today or for the last week of the break.  While at least a few small ones per day in the weeks before that. 
2) No naps at school today or for the last week of the break…while in the weeks before that Kyle had a cold and was very lethargic and was napping the days away… 
Was he so tired due to the cold or seizures?  Or a combination of both?  Who the F knows?  But in the days leading up to Christmas Eve he was sleeping literally 18+ hours a day. It was kinda weird.  
3) His appetite is back with a vengeance!  He’s absolutely ravenous!  I got home from work today and wifey said happily “he’s eating the pasta I made for me & you… I gotta make more!”
In the weeks before his appetite was quite bad and he lost a few pounds. And in the week before Xmas when he was sick & napping so much I’d bet he barely got 500 calories down. But he is making up for lost time boy!
Here’s the 2 steps backwards:
1) He’s messing with his teeth a lot and picking at his front teeth a lot and has begun sucking and biting on his shirts. 
This has been going on for a week now.  And he’s ruining his shirts.  He’s biting thru them!  In fact  one of the really nice shirts he got for Christmas now has 2-3 teeth size holes over his left breast. 
Don’t know where this new “habit” came from… But we’re taking him to the dentist on Wednesday to try to determine if it’s a teeth issue or just a stim. The dentist visit will probably be a disaster (like it usually is ๐Ÿ™‚ and if the doc can even get a peek inside his mouth we’ll be lucky.  
So, hopefully it’s just a stim.  And a short term one at that…
2) Out of nowhere and for no good reason he’s having quite a few pee-pee accidents. He had 2 at school today. And had one a day for the last 3-4 days of the break. 
He hasn’t had a bad stretch like this in about 3 years or so. Why now?  What does it mean?  
We’ll probably never know. 
But I’m praying that we don’t have to go back to pull-ups (man sized pull-ups ๐Ÿ™‚ and that we don’t have to do have another weekend of intense potty training in our near future. 
That’s about it. 
That’s this months update so far…
3 pretty huge steps forward and one huge step back (the pee-pee regression) and one strange new stim to add in to his playlist. 
Yes it would be nice if maybe once we could have 3 steps forward and NO steps back 
But I’m an autism parent and after 11 years I know that’s not possible. 
So all in all I gotta say….it’s so good to see my wide awake, seizure free, hungry boy. If that means he’s got to eat his shirts and pee his pants I’ll sign up that every day of the week!

Written by

Frank Campagna

Iโ€™m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call โ€œthe kingโ€ :-).

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19 People Replies to “Kyle's Last Few Weeks – 3 Huge Steps Forward & 2 Weird Steps Back”

  1. I make my son chewing necklaces out of t-thirts. Works great.

  2. Bravo! And so get your wish for just the steps forward, seems that's not to be in our world! I'm autismmommytherapist, thanks again for the recent shout-out. Enjoy this blog and my best to your family!

  3. Love this blog, I am a father with a son with ASD as well and just kicked off my own website blog, looks like you have done things right and wonder if you can spare a little precious time on how you succesfully reached the world. Again I appreciate if you can please contact me through being a follower. My name is Brandon Roy you can email me through that. I look forward to this now that I have found your page.

  4. Sunny

    Could you elaborate on your "intense potty training" regime? We are looking for something for our daughter. Thanks!

  5. Mary

    The biting on the shirt could be a zinc deficiency. The author of Enzymes For Autism talks about this in her book.
    20 mg of Zinc worked for my son who was sucking his shirt while playing video games.
    The peeing can mean constipation. A urologist talked about this in his book, "It's No Accident."

  6. Anonymous

    Chewing shirts is common for kids with parasites. It's a whole thing for kids on the spectrum. 1/4 teaspoon of Luvos Mineral earth in 1/4 cup of water before bed every other night. Works every time for us.

  7. Ah, yes, the chewed shirts. We went through that, too – destroyed some of his favorite shirts! We bought some chews that look like dog tags and that helped.

    Yay for the three steps forward, and the two steps back aren't that bad! Happy new year!

  8. My 5-year old ASD boy chews his shirts. It's mostly jersey-knit t-shirts or the buttons on the button-up type shirts. He has plenty of chewies, which he will always use briefly and then throw them down. I've tried the chewy clip, but he won't leave it on. Sometimes, I will coat his buttons with the no-bite nail polish that's designed to help people stop biting their nails (or sucking their thumbs). It discolors them a little (it's a pale-ivory color). I have even used it on the inside ribbing of his t-shirts, although it makes them a little stiff, so try it with cheap shirts first. I'm not sure if it's good for the washing machine or not, but I haven't noticed any problems so far. It works somewhat, although he will then find another part of his shirt to chew (or chew his fingers). If you decide it IS a stem, it doesn't stop soon, and you get desperate, you could try it. It's probably not that good for you to ingest, but it's meant for nail biting, so it can't be that bad.

  9. Beth S

    Kids, boys especially, outgrow their bladders for a while. Hopefully it's just temporary, especially with his increased appetite.

  10. My son did the shirt chewing and suckling for maybe a year. We were recommended and ordered Chew Stixx off of Amazon! They come in four pack. It will save his shirts Autism Daddy! And our son stopped doing this altogether some time ago!

  11. Anonymous

    Any chance he has a UTI?

  12. Just a thought , but my daughter used to chew her clothes… couldn't keep up with her! So I bought her chewellery/ chew sticks etc and attached them to her clothes with dummy (soother) clips and other ingenious methods !! Stopped the clothing chewing ! try a search on chewigem… those are our favourites x

    1. Anonymous

      Awesome…I don't have the biting issue with my son anymore (he was a lot younger when he did it, his shirt would be soaked by the time he came home from school and home I would just change him )but will pass on the info like I always do….!

  13. I just love your last statement in that post

  14. I work with A kid who eats his shirts including buttons so mom sewed for him clear aprons that way he dos not eat his cloth and you can still see what he is wearing. About Kyle's Bath rooming issues maybe its just change from being off and going back to school ?

  15. Anonymous

    I dont know kyles size… BUT my 14 year old uses the good nights pull ups… in xl they go up like 100 lbs supposedly.. but fit a heck of a lot better than the youth or small adult sized medical supply pull ups..

  16. Anonymous

    My kid also eats his shirts. Some seem to taste better than others! It seems to come and go with no real reason other than it just being a stim. He actually refused to let us take one shirt off once because it was just that yummy. For awhile I considered letting him just chew it to shreds, eventually the thing would come off. But of course, then I caved and dealt with a meltdown after getting him out of it.

  17. Weird! William eats his shirts. 3 went into the garbage in 2 weeks. He also bits his arm…..In a strange sort of way, I'm glad other people have the shirt eating issue…..:)

  18. we went through a stage about 2-3 terms last year with shirt sucking and rubbing his face with the wet area it ended with a severe rash on his face, not good, we did have it finally end , although the past few weeks the shirt sucking has started although not so severe, I think it's a stimming thing xxxxx