Monday, January 23, 2012

A Typical Weekday In The Life Of Autism Daddy, Mommy & Kyle...



ORIGINALLY WRITTEN & PUBLISHED ON JANUARY 23, 2012




This is The King aka His Majesty aka Kyle... :-)


After writing my controversial blog post about "changing" our asd kids this weekend & then writing a followup post further explaining my thoughts I got the feeling from some of your feedback that I'm complaining a bit too much on the blog and that I don't accept my son's condition.

Nothing could be further from the truth.  And I don't have any problem with lots of complaining, that's what I created the FB Page and blog for in the first place...  :-)  But I did realize that it's been awhile since I wrote a blog post all about my son Kyle and what his life, and therefore our lives are like right now.  I feel like a give people a better picture of Kyle on my Autism Daddy Facebook Page, but I thought it's about time you heard more about the King himself here on the blog.

And as I've written in a previous blog post we are going thru a relatively good stretch with his majesty right now.  So let me paint what a good stretch look like in our world.  And also in that recent blog post about "changing" our asd kids I gave some examples of some behaviors and everyone assumed that Kyle did all of these.  He does not.   He doesn't play with his feces or only sleep 2 hours a night...

So as severe as Kyle is I sometimes realize how lucky we are and how much worse things could be.  And I always know (from experience) with Kyle that things could change at ANY time and we could have a "playing with poop" kid or a "he never sleeps" kid.  So when we are in a good stretch we try to appreciate it as much as possible. 

So without further ado...
Here's a typical school weekday in the life of mom, dad and Kyle right now.  Please note that this is subject to change at any time.

around 6:45am -- We hear Kyle stomping around in his room and/or our Autism Service Dog Paula shaking herself off.  And one of us runs in immediately to check that he's dry and say "Good morning Kyle.  Let's go pee-pee on the potty." And take him right away.  Sometimes he pees then, sometimes not.  We recently got him re potty trained for the 3rd time back in September so we need to keep this up.


6:45am - 7:55am is the usual CRAZINESS of the 3 of us trying to get ready for the day.  Kyle watches the 7-8am Sesame Street while snacking on cheerios or fruit set up next to the tv.  



He had some major eating issues and had lost alot of weight so we've kinda given up on trying to get him to formally eat breakfast at the table.  He's more of a grazer.  So we let him graze throughout the morning.  He eats like Cookie Monster.  He doesn't have a great pincer grip.  So cheerios are flying everywhere and Paula is following him around like a vacuum cleaner.  A few more trips to the potty just in case.  Mommy & daddy are usually yelling at each other about something during this stretch. 

Me:  "Where's his lunch box?"
Wife:  "Where it always is!"
Me:  "Which is where?!"

And Kyle will usually be happily walking around, swinging on his swing, playing in his room, coming back for more tv and snacks, and getting into EVERYTHING.  Opening drawers, putting iphones in his mouth, breathing heavy/ holding his breath, jumping on the couch, climbing on the couch, etc.   He gets his meds and supplements in the am,  He currently gets VERY SMALL doses of klonopin & thorazine (please no judgement!  they've helped his behaviors IMMENSELY and he is MUCH happier since being on them starting in August 2011) along with a fish oil pill, multivitamin and a probiotic.

One of us will get his lunch ready...any variety of the following... hot dogs, cheese, nuggets, fries, strawberries, blueberries, popcorn, potato chips, bacon, etc, etc....  (please no judgement we did the gfcf diet for over a year and treated him for yeast with no impovements)

The other will get him washed and dressed.  He can do some of the dressing by himself with ALOT of prompting.  Sometimes during the getting dressed phase he's too hypnotized by Elmo to focus so we have to turn the tv off to get him to focus.  "Pants on"  "arms through" "pull socks" etc etc

7:55am-8:00am Daddy finally gets Mom & Kyle off.  Mom drives Kyle to school.  We could get a school bus but this is our choice which I explained in this blog post.

8:00-9:00am  Whew.  I've got an hour to myself before I have to leave for work.  My normal work day is 9:30am-5:30pm or 10:00am-6:00pm.

8:10am-2:10pm  Kyle is in school.  It is an 8:1:2 all autism classroom that uses a TEACCH/ABA model.  He also has his own 1:1 aide.  His service dog does NOT go to school with him.  I explained why in a recent blog post.

"Does she go with Kyle to school every day?  No…  And she kinda can’t.  Kyle is non-verbal.  Paula accepts commands from us (mom  & dad) and we can’t be in school all day.  So technically she can’t be with him in school all day.  She does go with the wife sometimes to help drop Kyle off and pick him up."

My wife is a stay at home mom (SAHM).  I explained why in a recent blog post.

"When it comes to my wife getting a job... I honestly don't see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while...and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle....not a week goes by where she isn't called about something... picking him up early because of an illness... going in early for a meeting.... dropping him off late after an early morning doctor appointment...  It never ends..."

So while Kyle is in school these days she's running errands, shopping, calling dr's, therapists, setting up his after school schedule, cleaning up the house, etc, but she leaves herself some time for going to the gym and going out to lunch with other autism moms.

2:10pm-6:30pm  The time from when Kyle gets out of school at 2:10pm til I get home from work at around 6:30pm is when mommy really earns her money.  She's one part chauffeur, one part therapist/playmate and one part mommy.  Basically Kyle's got some activity to do pretty much every afternoon.  Because of his breathing/ breath holding issues his school forced us to see a behavior specialist 2-3x a week for an hour after school which thankfully his Medicaid waiver is paying for. 

Then one afternoon a week he goes to aquatic occupational therapy in a pool (which we pay out of pocket for and I fight my insurance company for 70% reimbursement), one day a week he goes to a "special needs movement" class at a local "Y" by us, and 1-2 days afternoons a week an ABA therapist comes to our house for one hour sessions (that we pay for and don't get any reimbursement). 

And amazingly between all this activity there is still some time in between so that's when mom & Kyle will sometimes hit a fast food drive thru (especially if she checks and sees that he didn't eat his school lunch), sometimes go to the park/playground in nice weather, and sometimes they just go home and hang out together.  This is when there's some of mommy singing and reading books and attempting to entertain the King...

Usually most of these afternoon activities will finish between 5-5:30pm and when I pull up to the house at around 6:30pm I can see mom feeding Kyle.  Dinner is the one meal where we try to get him to sit at the table and unfortunately that sometimes means strapping him in.  It's gotta be done or the kid won't eat anything.  And yes the tv is on during dinner.  Either the living room tv is pivoted so the king can see it from his dining room seat...or we put a show on the ipad.  The losing weight thing really took a toll on us, so if he's had an especially bad appetite day the wife might even be fork feeding him his chicken or hot dog or whatever. 

As soon as i walk in the door, after all the kisses and hellos and the taking the dog out for a quick walk, the kid is grabbing my hand and motioning that he wants to be unstrapped from his seat.  He NEVER asks the wife this.  He's playing me.  And I usually want to give in. 

Me:  "Babe, he wants to get up.  Maybe he's eaten enough."
Wife: "He's eaten literally nothing all day!"

So I excuse myself and let mommy finish the torture that is dinner and go upstairs to change into my pajamas.  We are a PJ household.  The earlier we can get in our PJ's each day the better...and this goes for all three of us.

6:30pm-8:00pm -- I come back downstairs and take over hanging with Mr. Kyle and lucky for me that is when he is at his most stimmiest!  :-)  He's still been very happy lately...but very stimmy for Mr. Kyle means playing with his saliva, placing it on things, going into the bathroom sink 



and drinking out of the hot water, stomping around throwing books, breathing heavy/ holding his breath, hands in his pants, climbing on the couch/staircase, jumping on the sofa, stage diving from the ottoman to the sofa, etc, etc.    




In a strange way this is his way of winding down...kinda like the storm before the calm. 

All this while the tv is on with Sesame/Dora/Jacks Big Music Show playing in the background like the soundtrack to our lives.  While he's stomping around like this some nights mommy will walk up with another forkful or two of dinner and try to get a few more calories in him.  And he usually opens his mouth and accepts. 

A few times a week the wife will cook an amazing meal and we will attempt to eat now, while Kyle is still awake, but it usually means one of us has to play goalie, pulling him off the sink, out of the tub, off the desk, etc, etc.   So sometimes we eat seperately.  Her now and me after the king goes to bed.

Lately around 7pm I've been giving him his second and final dose of klonopin along with 300mcg (micrograms) of melatonin.  Then around 7:45pm each night I will take him upstairs to his bedroom and attempt to begin the bedtime routine.  It's been pretty good lately. We put on the Sesame classic "Sleepytime Songs and Stories" and sometimes he's out by the end of it which is around 8:15pm.  If he's not out by the end of it and he shows no sign of slowing down I'll break out the big guns.  I'll give him two 3mg (milligrams) melatonin pills and usually with this he'll be out by 8:45-9pm.  Now the 15-20 minutes before he actually falls asleep can be absolute torture sometimes... lots of flopping around like a fish out of water... lots of getting up and running to the window, sometimes some window head banging, lots of heavy breathing, lots of jumping up to turn on the light, or to run to the bathroom for more hot water out of the sink.  Some nights I literally have to yell "ENOUGH!" and it actually works, it stops him dead in his tracks and he settles down.

But regardless of how he falls asleep, he's usually asleep by 9pm by the latest.  And then I watch him breathe normally for the first time all day... 

Then from 9pm on the wife and I are on our own!  Woo-hoo!  Usually that means eating dinner on the couch if we couldn't or didn't eat before I brought him upstairs and watching a show or two on the tv.  On most nights I'll be laughing at a sitcom at 9:30pm and look over and see the wife passed out on the couch. 

I'll watch a little more tv... maybe help with some dishes or laundry... Mess around on Facebook or the Blog with you all... And before I know it, it's 11:45pm and I'm dragging the wife off the couch to bed for the night.

If we are lucky the king will sleep til 6:45am... and he does maybe 80% of the time... the other 20% of the time he's up as a pup at 3am...and the whole routine starts over again...

____________________________

So that's our typical weekday these days.  And compared to the summer of 2011 which I recently began calling "The Summer Of Rage" where he had multiple violent meltdowns per day, we've been going thru a really good stretch. 

As you can see there's not alot of down time so when there is we really aren't "working with him" on skills or anything.  We are just living and letting him enjoy his downtime.  It's been so long since he's made any major significant progress that we are lately just happy that he's happy.  That's most important to us.  And to be honest, we are both exhausted in the evenings anyway so there's not much time to work on formal things.

But all in all Kyle's been a very good boy behaviorally and in his own weird way has made progress.  He's been very happy and loving and likes to hug and kiss and climb all over me sometimes.  And even the bad things he does can be looked at (by us) with a positive spin...like he notices more things now.  He is in to EVERYTHING.  He was obssessed with the Christmas tree, always playing with it and putting the ornaments and lights (!) in his mouth... but at least he noticed it.  There was a couple of years where he didn't notice things as big as that.  He's always opening up drawers and grabbing things out of them (and of course putting them in his mouth) but at least he's noticing things which is a positive!

As usual, this blog post is all over the place and much longer and more rambling than I ever expected.  Basically I just wanted to write a post to say that even though I complain on my blog & FB Page about autism alot and my son some, I just wanted to give you a different window into our world, our weekday world to show you that yes, it's hectic and yes Kyle is non-verbal and severely autistic but when we are going through the good stretches and tag teaming as parents it really is somewhat manageable and happy in our household. 

But when the bad stretches come with Mr. Kyle... and they will...they always do...storm clouds are coming, I can feel them.... when the bad stretches come all bets are off and our household and lifestyle can be totally different and traumatic.  It's not good, but it's true, when you only have one kid you live and die by his moods.  When he's in a good place, we all kinda are...and when he's going thru a bad patch of weather, it's hard for mom & dad to stay sunny, if you know what I mean...

Now the weekends... well not that's a whole nother story with a whole nother routine that I'll cover in a whole nother blog post...  :-)
  
So for now I'm gonna end it here...

The End...  Over and out!!  

I'll leave you with one more pic of the king, bouncing on a ball while the ball is bouncing on a trampoline...  now that's talent...



if you are going to leave an anonymous comment below, please at least leave a name in your comment (even if it's a fake name).... this way i can respond to your comment and differentiate between one anonymous comment and the others.... thanks!




091814

47 comments:

  1. I love it. You two are GREAT parents. NEVER forget that.

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  2. Nice! Not too different from our routine. We still try the GF diet... seems to have a real positive influence on Nate, but harder than hell on the rest of us. I don't think I would get much sleep without melatonin (for him... if he doesn't sleep... then I won't).

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  3. Jessica in AustraliaJanuary 24, 2012 at 2:08 AM

    Very impressive!! As for "no judgement" comments.. I say choose your battles.. sometimes life is so much easier with a few little things here and there that just make life simpler, and a bit more bearable. I think you are awesome parents!! I like how you said that things could be worse. That's how I feel. I'm so thankful that we have it as good as we do, with no major medical issues, life threatening incidents, we don't have a "runner", etc.Wwe have a generally happy, healthy child! We are thankful!! Nice to see others being positive! I love your blog!!

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  4. From what i understand this blog and facebook are your places to rant, so rant away... if people don't like it, they don't have to read it!!!

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  5. You and your wife are amazing and loving parents. Don't let judgemental comments from a bunch of strangers (most of whom don't even pay you enough attention/respect to quote your correctly or understand what your point really was) make you feel like you have to explain yourself or defend your actions.

    On another note though, this was interesting to read. And exhausting to think about. lol Mine are still very young so we don't have quite all those things going on yet. And with me being a single and disabled mom (husband abandoned us...) I am honestly not sure how much will get added as the kids get older. I of course will do as much as I can, but like you said here, my main hope is for happy and healthy kids. :)

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  6. Thank you for sharing this. I loved reading this and having a peek at you and your wonderful family.

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  7. No judgements! I don't know how you guys do it. My son has Asperger's and you could say high-functioning AS at that. But his still drives me crazy!!!!!! I absolutely can't stand another minute of it. Not to make light of your son's situation but when your son seems so "normal" most of the time, when he's having behavioral issues they are willful and purposeful (or seem that way). As for medication, that is the only thing we've tried that works, so I'm over it. Go for it!

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  8. I think your stories and "complaints" are helpful for people to hear who are going thru similar situations. It is obvious by your posts that you and your wife love Kyle with all your hearts so complain away, it only helps make you a better parent because it couldn't be healthy to hold all that in and sometimes writing things out helps the writer understand and find themselves which can among other things amuse and entertain you to find out things about yourself. I love my two autistic grandsons with all my heart and I have watched them on my own for a week at a time here and there and believe me after one day I am praying for help to come waltzing through my door. And even though it doesn't come, I am still happy to see them after a few hours of sleep, throwing their cereal, taking all their clothes off again and again and again, opening the fridge, etc....I still light up inside when I look at them because I can pick up the cereal, put their clothes back on, close the fridge again and again and again but when they are back at home with Mom and Dad I can't see them and that really sucks!

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  9. Another great post. I am laughing at the commonalities we face. Our son goes to bed with the same Sesame Street "Sleepytime Songs and Stories" video and my husband also yells the "Enough" which sometimes does just the trick! Thanks for sharing. BTW - you might tick some people off, but you have brought me great joy and luaghter. For my sake - don't worry about all those who don't like your posts. They certainly dont have to read them!

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  10. Hey I'm just hoping that this long good stretch lasts for you, your wife and Kyle. Things can get tough but your rants, blogs and venting must be one of the healthiest ways of easing the strain. Those that judge just don't get it. You have all my support and good wishes. Our ASD journey is different but I so get you when you say you feel fortunate but that things can shift so quickly - when the shifts are good we all celebrate and bask in our fortune!, when the changes aren't so good my heart sinks as you can't help but wonder what might come next. So, tonight I'm hoping the sleepytime songs get Kyle down early and that maybe you adults can have a little extra time together or maybe even eat together! Your strength is inspiring

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  11. Really Good Post!!

    Family disputes such as divorce or separation can be an emotional and chaotic time of your life - especially when there are children involved. Family Lawyers WA http://bit.ly/v5z1xZ

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  12. Your posts have had quite an impact on my husband and I, it's comforting to hear we're not alone. Thank you. -Kaleigh

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  13. I LOVE your team approach. My hubs often has to commute two hours to work depending on what project he is doing so most days he is long gone before my girl and I wake up. I love that you can tag team your morning routine.

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  14. while your grass may be greener than most, you still share struggles that most of us have daily. i would say my daughter is more hf, but not quite asperger's and we still have a lot of these kind of days. i love reading your posts! keep it up!

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  15. I just want to say thanks from a prospective Special Ed teacher. I'm just wrapping up my credential and have had the luck to be able to work part time in an autism program at a local public school. Your insight really provides some needed perspective for me. I don't know what it is like to live with a "Kyle" every day, other than in a school environment. Thanks for the insight.

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  16. My 8 year old is also autistic. We are also having problems with keeping weight on him. Have you tried periactin? It is a antihistimine that increases the appetite. We have had success using this. Angela C.

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  17. AD PLEASE don't appologize for "complaining"! I love your blog, it makes me feel less alone in this crazy thing we call autism.
    One question, the neurologist keeps pushing us to give our 3 year old Respiridone and Depakote. How did you come to terms with medicating your son? Or how did you make that decision? I'm a little bit worried about the side effects or long term effects. He's already on Keppra for seizures but has many tantrums and meltdowns daily, and he doens't sleep well either. Any advice is greatly appreciated!

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  18. Sue from Australia.June 19, 2012 at 7:44 PM

    Please dont EVER apologize for venting! I love your blog. Your life makes mine with my 17yo AS daughter a big holiday. Even when she talks non stop about weddings and the Titanic (honestly, I DONT CARE HOW MANY BABIES KATE WINSLET HAS HAD!). Peace and strength to you all.

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    1. A big lol to your post! I love it!

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  19. We have to do what works for our kids. Even in the same family with neurotypical kids, not 1 thing will for all of them. I feel blessed to have your family in my life(even if its online). My son is almost 7, nonverbal and somewhat like Kyle.

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  20. It is your blog--if you want to complain, go right ahead.

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  21. Kyle's day is very typical of our day, same situation with my wife staying home and taking care of our son. In fact, your son appears to be very close to ours in terms of his overall development, age, non-verbal communicator, what he likes to get into, pulling things out of draws, dealings with the xmas tree, how he needs to eat dinner (strapped and with the living room tv and/or DVD player on the table) and most everything else (except for the service dog). Keep up the posts, were enjoying reading about the "parallel lives" from the other side of the country with parents that have similar thoughts, concerns and take joy in the winning moments when they happen.

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  22. This is a great post, thanks!

    How you get Kyle to take pills? If you have any tips to share on this I'd love to hear them.

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  23. I learn a while ago that I can't force my child on people the fact is I don't want to be around him much myself I have yet to fine the joy in being hit,kick,bit,spit on and out right attack and to expect other's to want to deal with it is just crazy. When I hear a parent say they get sick of the school calling who are they suppose to call when your child is out of control or better yet they get insulted by parents my question is why take them or send your child there. You don't believe what they say,they refuse to enjoy YOUR child behaviors ppl this is your child not theirs this is a job for them not their life and that iep is only as good as your child allow it to be and it ends @ the end of the school day. It amaze me that you want ppl to touch your child in such a personal way changing a school age diaper how insulting. One teacher told me when she retire she intend on writing a honest book abt some special needs parents and being honest without fear of being sued. The fact is where else can you BULLY staff into dealing w/ur child ? no where !!! and yes ppl are pulling back and away they don't want to deal with you it's not their fault that this happen your child,your problem,deal with your child.

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    1. Your comment makes no sense. From your rage and projection my guess is you are a Special Ed teacher who has been "burned". That's the only thing I can guess since the blog post mentioned nothing of the sort of things you accuse them of.

      Sooo...Look. I want to tear into you, but maybe you lost your job or feel "attacked" by the Autistic parent community. So I'm going to put MY rage aside, and instead try to understand where you're coming from. You should try it. Not holding on the rage is a healthy thing. You have A LOT of it in there, to come on here lashing out at someone you (probably?) don't even know.

      IF you are/were a Special Ed teacher and you had to "deal" with kids like Kyle here, and that was too much? Wrong profession. Really. Not everyone can be a teacher. And a Special Ed teacher is even more difficult and complicated. IF you were a teacher and you lost your job over something like this, well, it's probably for the best. Take the time to get to know yourself and find a career more suited to your strengths, because patience is NOT one of them. I also would wager compassion and understanding is something to have issues with. Hey, we all have something lacking. It's OK. No one's perfect.

      If you are currently a teacher though...you seriously are upset by your career choice and I suggest you bail out NOW and find something else. You'll be happier. Your bosses will be happier. The parents will be happier. And above all else, the KIDS will be happier.

      Or maybe you know a Special Ed teacher who has been in a recent kerfuffle with parents or something and you feel the need to take to the internet to defend their honor or something (even when they were not picked on here, as the blogger NEVER says ANYTHING bad about teachers in this post). Same advice goes for them, and I'd add that you should just support whomever it is you're feeling angry for in a more productive way. Like helping them find a different career path. Give them some supportive advice. Getting angry and lashing out at random folks is no way to feel better about anything.

      Then there is a 3rd possibility- you are not, in fact, a teacher of any kind and have no experience with this sort of thing. In which case you must be trolling for some reason. I don't feed trolls. So I'll just say good day to you.

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  24. Hi Autism Daddy, I have 3 with Autism. Joel is 25, Dylan is 21 and Liam is 14. My older 2 didn't get a diagnosis until middle school. Teachers and even my family don't understand autism. My mom in law asked why my kids aren't working. That is a serious difficult conversation. I want to put my beautiful sons in a good light, but if I say all the truth, every one is mad. I'm starting Village with heart on face book so my sons and other teens can do photography or crafts and sell them. Keep up the work. all you do he probably remembers.

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  25. I wish blogs had a "like" button like Facebook. My son is newly diagnosed (May 2012) he has ASD and is high functioning. Your stories and many of the comments are so insightful, inspirational, and often times hysterical. Thank you for being open and sharing your experiences.

    Jenn

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  26. prayers for you and your family. my gson is an aspie, has had his moments, and we have learned alot trying to care for him... he's almost 11 now, and we are dealing with new (old) issues at school. I pray we find the wisdom, strength and patience to get him over the next stage.

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  27. I have not yet commented on your blog although I do LOVE it! I had to giggle over your pictures as it is like you were in our house photographing our "King". They are very similar in a lot of ways. :O) Thanks for sharing your life in the blog. It has really made me feel better knowing we aren't alone and it's an autism related blog I can get my hubby to read as well! Thank you!!!

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  28. My wife is a special ed, now called exceptional ed counselor, with one major pet peeve from the educational staff at her school: "The apple doesn't fall far from the tree" in describing parents of autistic children. When they realize my wife is a mother of a 10 ten year old autistic son they just keep quiet. She is quick to jump in their business over those kind of comments.

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  29. This post made me feel soooo much better about our daily dealings with our son, Joshua, aka the Barbarian! I was feeling guilty about letting him graze through out the day but this post helped to put it all into perspective. He will eat more food if it's on his terms. I could also identify with "downtime". He's very challenging to work with and I don't ooze patience. He's isn't currently receiving any therapy so I do try to work in some kind of "therapy" at some point during the day...but it's gotta be brief or forget it. Thanks for sharing :) Erin Bailey

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  30. Hi! I enjoy reading your blog. I can relate as I have a son on the sever end of the spectrum. In your post about regression, was there a particular incident ( I.e. seizure or vaccine) that you can pinpoint that caused the regression? Did you continue ABA after he turned three? If you didn't, what was the reason you stopped? What model ABA did they use and with which company? Do you think ABA does not work then, at least for your child? Please feel free to email me back at a2byfrom@gmail.com. Thanks!

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    1. Hi, Please read again the article. it says clearly his son goes to a special school with ABA and has 2 private sesions of ABA a week paid from their pockects.

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  31. Thank you for sharing, the comment about the evening downtime and stimming makes a lot of sense.
    My son has evening behaviors that he doesn't display at school, and this gives me an idea of why. The melatonin helps Kyle sleep? Night time and sleep is a battle for us.
    Anyway, thanks again for sharing your experiences and thoughts.
    Shannon

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  32. I absolutley love your blog!! My husband and I enjoy reading it and comparing our lives. There are so many things we have in common!! We often laugh and find a sense of "we are not the only ones" which we have found very comforting. Thank you for your rants, your excitement, your honesty and all. Keep up the good work. Life with a non verbal autistic child is like riding a roller coster every day!

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  33. Love your blog!!!! My son is high functioning ASD, but I work with children and adults with severe ASD at a group home, cud is to you and the others who comment on here that you keep your children home with you instead of sending them to a group home!!!! You have no idea the things that go on in those places! When you are feeling frustrated and down about, well, life with ASD, remember that you are a superhero and are doing the best most awesome thing in the whole world!!!! I just have one question, do you ever accidentally call your son Kyle?

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    1. Hi Hanna, can you tell us what is going on in the 'group homes'? please even post anonymous so people are aware and someone might be able to change things. tx

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  34. I have just found this blog and boy am I glad...I am 2 years ahead of you, slightly different situation, we have Aspergers and hfa combined with dyspraxia. I love your posts and can identify with a lot of things you go through...we are currently refusing to go to school (mainstream, no additional help or support-too hf) on a daily basis so I now have the authorities chasing me! School have tried to help-so much so they disciplined him for hitting out (slapped another child) FIRST OFFENCE in the playground, during an altercation when they were calling him names and despite him walking away, they followed and continued so he hit. Incident not witnessed by staff, he went in and told staff...he was put into isolation immediately, off the playground for 24hrs whilst they (staff) decided what to do. Happened Mon am. Risk assessments etc. FRI 3pm before half term received email stating he would be in a segregated area of playground for 4 WEEKS, he would then be supervised for 2 further weeks and THEN it would be reviewed...6 WEEKS punishment!! As you can imagine ds not happy-can't mix with friends during playtime & lunchtime-really encouraging school attendance!!!
    Please don't worry about moaning or complaining, we all need somewhere to let off steam!
    I take my hat off to your wife, please tell me how she still manages to make time for the gym and meet friends...Long may it last for her and tell her to keep that up-she needs it-my 'my time' disappeared along time ago and now I rarely get chance to meet up with anybody and if I do I have to give all the details to my son and report back when he gets home-it's worse than living at home and being a kid again-at least you felt some delight in deceiving parents when you got the chance!!!
    Good luck and love to you all. Tina

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  35. Hello there...I see your blog through my daughter's FB page and really enjoy your posts. My grandson is in the ASD range, but verbal and generally very well behaved. Learning about autism through blogs like yours has been very helpful and my grandson and I hangout together and enjoy one another's company. If he is having an off day, we just each do our thing and connect from time to time. He is a grazer also, and a committed nudist which I had problems with - and to be honest, still do on occasion. But there you have it. That is who he is and I love him. Every good wish and blessing to your family. Keep up the good fight, but remember to look after yourselves. The King needs healthy minions to stay healthy himself.

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  36. I love the honesty in this post. From one Autism parent to another, I was saddened to read the "no judgement" comments. Yours is the first non UK autism parent blog I have read, and I've been shocked at how much judgement there is within comments. Surely as Auty parents, we should be supporting and encouraging each other?

    I just want to say you and your wife are doing an amazing job. Kyle looks and sounds happy. Our son (Sam) isn't 3 yet, and has only recently been diagnosed - so we are very new to this journey. He's also non verbal, and sounds similar to Kyle in a lot of ways. Anyways... Just thought I'd let you know there's a huge amount of non judgemental, supportive parents on this side of the Atlantic!

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  37. Hi AD, I have learned so much about Autism through reading your blog than I ever new about A! It's a tough life for you parents but there are lots that just put their children into foster care or self medicate!! Which is worse??? Love your blog keep it going and His Majesty as you call him has the best parents anyone cud have! Don't give a S ... about others it's your wee King, Wifee and yourself that matters! Love your blog keep it going or people like me wud never no what it's like to parent an Austic child! xo

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  39. Dear parents: you are doing a great job! Never give up! I cried a lot when I read you blog, I can't imagine your suffering and exaustion. My son has Asperger and I also had to drop my job to take care of him, but I have no regrets. Your little King is receiving the best treatment that exists: LOVE!

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  40. I had a chuckle at your not sleeping and playing with poop comment. My oldest has Aspergers and I went through both of those (at 13 the sleep is still a work in progress). My youngest Aspie also had what I call the black summer - it makes you appreciate the hectic yet manageable routine.

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  41. As I've been reading your blog, we have so very much in common, it's unbelievable! I am a widow, my sons dad passed in 1997..Diabetes & heart failure and other complications..it was so very hard on me..taking care of him and my Autistic first born son..I have 2 other sons, one is (middle son) a MRI technologist, the youngest a Race car mechanic. I thank God for them also, as they are both "My right hand"..help me with everything they can! My first born is now going on 45yrs. of age..he is very loving, hugging me all the time, but is self-destructive. It's been hard all these years, but I would not trade the sacrifices for the world! I have been dealing with his sleep problems lately, using Melatonin and Trazodone, some nights it works other nights he is up at 4 am.up until it's time for bed again..you are both doing a fantastic job with your "king"..love the nick name! Do you get any help from family members? I know that you will never give up on him!! I have not and never will give up on my "Angel"..he is my life..!! May the Lord give you strength to go on, be happy and much love to "your King"...

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