Friday, November 9, 2012

This Is What I Mean By Severe Autism...






(originally written & published on November 19, 2012)



I write on my page a lot that my son Kyle has severe / classic / non-verbal autism... and that he has the receptive & expressive language of an 18 month old and he's been at that 18 month level for years.  

And almost every day someone will respond to something that I write about Kyle by saying something like "my son sounds exactly like Kyle" and I read that and I think...  "I've never met anyone like my Kyle"

I swear Kyle has his own form of autism.  So I thought I'd relay a few quick stories to show you how "severe" he is.

Very often when I write that Kyle's autism is "severe" people assume it's because of his behaviors.  

"He must be a real stimmy kid, or self abusive, or violent.  That's what he means by severe."
Nope.  Kyle's exhibited varying degrees of all of that over the years, but that's not what I mean by severe.

Here's what I mean by severe.

Tuesday night about 7pm, Kyle's standing in the living room.  Me & the wife are sitting on the couch.  Out of the blue I say to him 

"Kyle, turn off the dining room light please"

He immediately recognizes that I'm asking demands of him and starts breathing heavy and getting stressed out, probably thinking "what does he want?"

He then picks up a ball that was at his feet and starts bringing it to me.

"Thanks, but no buddy, not 'pick up' but 'turn off light'"

He grabs a water bottle off the table and takes a drink.

"Good trying buddy, but 'turn off'" ("turn off" said in that annoying ABA sing songy way :-)

And the wife says "show him"

So I take him close to the light switch and say "turn off light" and of course he does.

And it made me realize that even some of the stuff we think he understands he really doesn't.  If he's standing near the light switch and I say something he's probably assuming I'm saying "turn off light"

If he's standing in the bathroom in front of the sink and I say something that sounds like a "mand" he's probably assuming I'm saying "wash hands"

But if I put him in the middle of the living room and said "wash hands" or "turn off light" he's got no clue what I'm asking him and he gets stressed out with the fact that I'm making demands on him and will look for the object closest to him. 

He's 9 1/2 years old.  This is what I mean by severe autism.

Here's another quick example...

The other day he was getting out of the car.  And he stopped and tried to slam the car door shut on his own.   He's never really done that before.  And the wife was like "good job, what a big boy closing the door and helping mommy."

He's 9 1/2 years old.  This is what I mean by severe autism.

Kyle doesn't walk anywhere or do anything with a sense of purpose.  He just wanders / meanders through life.  Most of the time he's happily wandering / meandering... but still.  For example, every Saturday Kyle goes to a special needs sports class which is held in a school gym.  It's basically attempting to teach these kids how to wait in line, run to a cone and come back, dribble a ball, attempt to shoot a ball.  There's all different functioning levels in the class....but my son is the only one who has to have his hand held literally the entire 45 minutes, and be led through each activity.  Listening / following directions / grasping what is going on around him is just not in the cards for him right now...

He's 9 1/2 years old.  This is what I mean by severe autism.

There's tons more that I could write, but a lot of the others you could say are truly our fault as parents for not pushing him more.  His getting dressed skills are  poor, his eating skills (using utensils, etc) are poor.  He is potty trained (thank god!) but we still need to wipe him and lead him through the "flush, wash hands, etc, etc" every time.

He's 9 1/2 years old.  This is what I mean by severe autism.

That's all for now.  And no, there was nothing serious or depressing going on this week that made me decide to write this today... but the "turn off light" thing has stuck with me for a few days...

So after reading all of this can any of you truly still say "my son is exactly like Kyle"?

THE END :-)

__________________________________

PS-- Hey guys, by the way, I didn't mean to sound like I take offense or are bothered when people say their kids are exactly like Kyle. It helps bond us together... I get it...

And it's only when he has a "severe moment" that I begin to question if there's anyone out there like my Kyle...and based on your comments the answer is yes.

But I took no offense at all...sometimes I think my off the cuff, in your face writing style gets me into trouble and makes me sound angry or annoyed... LOL.




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




----------------
  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box 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!!



012215


125 comments:

  1. I can say my son is exactly like Kyle. My son has had an improvement in receptive language as long as I keep the request to a simple two or three words.

    We haven't had success in any "special needs" sporting of social activities. I do say "good job" when my almost 8 year old closes a car door or picks up something that he dropped all by himself. We are having success with toileting of late (thank god 'cause the price of pull ups has skyrocketed) My son doesn't use utensils well. He eats with his hands mostly.

    My son also chews on plastic and I just say, "Don't choke, Bud" We keep his shoes on top of the fridge so he doesn't chew the rubber soles or hide each shoe in a different place.

    I know "severe". There is tons more I could write too.

    Kelly

    ReplyDelete
    Replies
    1. Just to suggest buying some "chewlry", different rubbery things meant for chewing, might help. They work great!

      Delete
    2. Have any of you tried Reflex/Handle exercises they worked great for my Angel and she was very similar on the not understanding language until we started doing these with her at home. Worth a shot.

      http://www.planforlearning.com/plan_handle.html

      If you can get OT and PT to do them to it helps allot with their progress forward. Angel went from like 4 words to 80 in a year. It basically reprograms the motor memory and the exercises help them go back and make up steps they missed so they CAN progress...if they missed steps in learning they have to make them up in order to lay down blocks to learn more with or they never progress. I like it because it works and its not drugs and at first you will have to hand over hand most of the exercises...but as it moves on they learn what they are supposed to be doing and actually start doing it so you can see the progress. SO NEAT...hope some of you try it. She sees Angel once a year for $150 was well worth it for me. She gives you the disk to take home so you do the exercises with your child. That's it. (this works for lots of things not just Autism)



      Delete
  2. My son Michael is 10 and you describing Kyle is almost exactly our michael except he is not tolieting independently . we do a lot of ABA therapy but after reading your post I think I'm going to give Michael a test to see if he understands simple commands that he follows when he is being prompted by an adult . sometimes I realize he doesn't understand when I ask him to pick up his shoe and he reaches down and hands me whatever is close to him ....we have never found another child similar to Michael but I think Kyle is close.

    ReplyDelete
    Replies
    1. So funny to read this - my Michael is 10 and almost exactly the same and not toilet trained either. We've been doing ABA since he was 5 1/2. It has helped, but insurance doesn't cover so we've had to slow down tremendously. Life goes on!!! Do love reading your post!

      Delete
  3. Yes. I so know what you mean and my son who is about to turn 9 sounds very much like yours. I know what you mean about hearing others say that and you think, no. No, your kid is not like mine. I have Asperger's and another child with 'mild' autism, then we have Beans. He is what Kanner meant by autistic. At conferences the other day I left feeling not understood and somewhat... I don't know what you call it, maybe confused. One of his IEP goals was to follow a 2 step verbal instruction. They said he was. I know he is not. They said if they drop something and call for him to come pick it up he does. Now, don't get me wrong. Coming when his name is called is a new, fantabulous thing that I wondered not long ago if it ever were to happen, and now it has, so I am thrilled enough that he is doing that. However, if he had no context clues, such as seeing something drop, or someone pointing and saying the ABA command give me, or hand me he would not know what you're saying, or at the least be able to carry out the physical act while trying to decipher your words. All that is more than he can do at this time, so for me I left feeling a little irritated that they did not see how they were mis- perceiving his abilities. If I dare say anything, I end up looking like a Negative Nancy who just wants to believe her child cant do anything at all. Not true. I am just seeing what is there and I feel it's doing him no justice to make his actions into something they're not. One of my special interests is Autism Advocacy and above all neurodiversity, but a part of that is seeing him for what he is and meeting him there. Attributing things to him that he is not meaning isn't thinking positively. It's just lying to ourselves and misrepresenting what he IS trying to say to us, because I do believe that he does communicate with us with behavior, but I want to know what he truly means, not what I WANT it to mean. I think I may have a post that I wrote about this on my blog. I will look and share it with you if I find it. You're not alone. There are very few of us, though.

    ReplyDelete
    Replies
    1. As I read all of the replies here, it is obvious that there are many, not just "a few" (as we are often led to believe)and this is just one blog. I have noticed for quite sometime now that the focus is always on "success stories" and the "higher functioning" and the public is, I believe, being given a distorted view of how severely autism affects some individuals and their families and the challenges they all face on a daily basis. My child is 25, (had several years of ABA) and at various times in her life she was said to have mild autism to possibly losing the diagnosis and then moderate autism, high functioning etc. Now at this age we find that, in comparison to the "oh so many" positive stories of progress and breakthroughs and recovery out there and in the media, all the feel good stories about autism, that she is definitely not high functioning. I do believe there are many more out there who are severely affected, we just don't hear about them until a blog like this comes along. I have never liked the phrase, "if you've seen one child with autism, you've seen one child with autism". Would we dare to say the same about cancer? If you've seen one person with cancer, you've seen one person with cancer? The common denominator is that they all have cancer and cancer can be terminal just as autism can be devastating and it can and does affect every aspect of a person's life as well as everyone who loves them. I'm just saying, it does EVERYONE of us a disservice when only the lighter side of any condition or disorder is focused on as has very much been the case for many years now with regard to autism. IMO

      Delete
    2. My son will be 5 next wk and he has autism spectrum disorder......he is slowly getting better he says many many words now but I would say this has all just started in past year......he has been in speech therapy since he was 2 and OT since he was 3 and started a special Ed pre-k at 4 and it helped him so much....needless to say he can say a few 2 word sentences and can follow simple camass very well but others not so well bc he is not comprehending what we are asking and he has just started calling me momma last year and just started saying daddy.....he is a wiz at computers and iPhones .....wii and play station and we find his iPad has been the best learning tool for him bc there are so many free autism apps that help him.....his mobigo has helped alot as well.....we have to keep dead bolt locks on our doors that you can only lock and unlock with key from both sides for his safety bc he loves outside so much he will just open door and wonder off bc he has no fears outside and does not know danger so we keep close eye on him......he is very independent and has Ben potty trained since 2 all on his own and has never wet bed and he has always wore underwear to bed....,he just learned how to pedal his tricycle this past year and is very extremely picky eater.......I love my son and I am so proud of him every day bc each day is a celebration to us! God Bless you all on your journey with Autism bc they are our angels......

      Delete
    3. How is any of that relevant to this post? Odd?

      Delete
    4. It doesn't. Just let it go.

      Delete
    5. I work with Autistic children and adults I also have 2 on the spectrumall be it more able than. Some I work with some incontinent ! (Thank God ours are toilet trrained). I know I am stating the obvious but all persons who have Autism have varying degrees of autism
      And varying degrees of capabilities low function autism medium function autism and high functioning Autism . A pperson whom I work with you have to take to the toilet every 1/ 2 hour or else the person. Will wet themselves but the parents will not have the person in a diaper / nappy they are adult , personally I would put a diaper /nappy on the individual as eventhough we take the person to the bathroom every half hour the individual still has accidents and you then have to change their clothes . This sometimes is impracticle when you are out but the parents even know that their charge has accidents still ignore this fact and just give us spare clothes to change sometimes an accident could happen twice in one day even though you have taken the individual to the toilet some 5 or 10 minutes prior tothe individual having the accident .

      Have kept name and gender private due to confidentialality

      Delete
  4. Reading your post reminds me of something I heard early on in my families journey with Autism, "if you have met one kid with Autism, you have met one kid with Autism". This is so true, raising two boys with Autism, we get the comments like, "They both have Autism?... but they are so different". "What did you do with son X because he doesn't do X or have issue X". The "S" in ASD is part most people don't account for or understand. Also, have learned people's definition of mild, moderate, and severe can be drastically different and that is within the "professional" community.

    ReplyDelete
    Replies
    1. Jim, I have two sons with autism and I get this EXACT same thing from people a lot. Interestingly enough, the one who tested most "severe" at the time of diagnosis is the one who now appears least severe. They are just having very different journeys. And honestly, I don't know how to assess my youngest's level of functioning. My elder son would definitely be considered "High functioning" (though, of course, he has some moments where he still has difficulty functioning at all...) My youngest (nearing 6, but not nearing potty training, it seems) has at moments seemed to me to be on the milder end of things and yet, reading about Kyle just now, I'm not always sure if he does truly understand or if he has just figured out the routines...he certainly doesn't converse, or really ask questions, but does have enough language to mostly get his needs met. If only one of his needs was learning to use the potty. :)

      Delete
    2. Jim and Bliss: Very similar here too. Two sons with autism (no other kids but they do have older half-brother wish aspergers). They were considered to be mild to moderate at time of diagnosis. Now, however, oldest is talking, interactive, and toilet trained mostly, and is more mild at this time. Youngest is nonverbal, generally refuses to go near a toilet, but is coping with life by trying to figure out the routine or what it is you want, and far more severe. But like Autism Daddy has said, the context is very important. Even with routines he is very familiar with. This a.m., for example, getting his cereal and doing it hand over hand and he is still not completely sure where the cereal box returns to or the milk, so I know that is not a solid area for him. And yes, people will say, 'are you sure they are both autistic, they are so different!' or 'well if you tried with the youngest what you did with oldest' or similar. Totally agree with wishing he felt toileting was an urgent need as it is for the rest of us! In fact, his teacher (he is currently refusing to go to school) has said that he is capable of doing gradework about three grades ahead of his class, but that his behaviours (and how they deal with them) makes it nearly impossible to focus on academics. Well, we will just have to keep on keeping on. Good luck to you both!

      Delete
    3. I love this blog. I wasn't sure where to jump in so I chose to after this comment, it may not follow suit. My story is a bit different but the struggles are similar. I have a daughter who was typical until she was 5, but due to an unknown brain infection she has multiple disabilities, one being epilepsy and a secondary diagnosis of autism. She is 13, non-verbal, ALWAYS stimming, so much that her hands are often bloody from the constant rubbing on whatever she can find. She also is an undresser (I would love to hear anybodies input into how to deal with that.) She does not make any eye contact, does not interact with anybody, etc. I get a lot of people asking me, " What does she like to do?" This used to be impossible for me to answer, since I had to learn who this "new" child was. I have learned to keep it simple, "she likes to chew on things, she likes to pace, and she likes to eat." I feel very accepted by the autism community. Even though all kids are different, I feel like the people with autistic children are the only people who really get me and my struggles, and who let me share my "ugly" feelings when I need to get it out.

      Delete
  5. I can definitely say that your Kyle is more like my son than any other kid with autism that I have met. My son is always the most severe. Always. And his therapists and teachers have noted it. They have to make more adjustments and accommodations for him than any other kid. While other parents are striving for their kids to be "normal," we are striving for him to remain and happy and manageable. All of the things you described above are like my son. I think that your son and my son have a very similar autism. An autism I do not see where we live, and an autism that you do not see where you live. Except in our own sons. So, there are other kids like Kyle. They are just more rare. It is not the common autism, I guess. When people tell me they've worked with kids with autism before, I just want to tell them to throw everything they know out the window, because my son will not be what they expect. He's 5. He was diagnosed at age 2. He tests at a 9-10 month level, but I think in some areas he could be up to 18 months. We have had very little progress in the last 3 years. Just some small, gradual things, but we are happy with those tiny bits of progress. And he's a happy kid. He is not potty-trained yet, and he can't swim or ride a bike, or swing himself on a swing (he has to be pushed, and it's one of his favorite activities). His interests are limited to "The Best of The Wiggles," music toys, food (and this is the major area where our kids differ, because luckily mine is a great eater), tactile/textures, and physical/sensory play (swinging, jumping). He is a wonderful kid, but very severe. Severe like Kyle. If you met my son, you would agree. I don't always comment on your posts, but I read your posts EVERY DAY, and your blogs. I can TOTALLY relate to you and your wife. I totally get everything you say, and understand and love your humor. You are the only parent out there that I feel like I CAN totally relate to. I feel different from all of the other autism families in our area. They are great people, but none of the kids are like my son. Thanks for all of your posts and blogs. Please keep writing, and making me laugh at things that "normal" families would not understand.

    ReplyDelete
    Replies
    1. I also read Autism Dads post when I can and after reading this one and your reply Laura, Jake's Mom I agree completely my little dude Luis age 4 non verbal and with the same struggles as your EXACTLY...to a T. I pray that we can get by day to day and continue trying to help him get to a goal of being as independent as he possibly can as I fear the future if something were to happen to his father or I who would he have to depend on...

      Delete
  6. I can also say he's just like my son. And I do mean exactly. I can ask Justin to hand me the remote control when he's right by it, but he will pick up a toy and hand that to me instead. I've just recently come to the same conclusion.....he just doesn't understand what I thought he did. Justin has been diagnosed as severe/classic Autism as well. He also meanders through most days without a true purpose.

    ReplyDelete
  7. My son Dominic is exactly what you would call as *severe*. He is ten years old now. His receptive language is much better than his expressive but he is still not toilet trained. Still he only knows simple commands like take a bath, time to eat, shut the door. He still refuses utensils, we still have to keep my jewelry up because he likes to chew on it all. Most of his shirt sleeves are from chewing. He wanders aimlessly around. He plays with the same toddler toys in a repetitive manner. He has to have hand over hand for just about any activity. If it isn't jumping on a trampoline or swinging or bouncing on a yoga ball he needs help. He can't throw, catch, dribble etc. Even playgrounds and slides are all things needed with assistance. He refuses to eat certain foods and will not take any kind of medication. He spits them all out. He has had to have foam surgically removed from his nose because he has shoved it up there so far. My son isn't *exactly* like yours, but I do know severe. And if I didn't tell you, he is also completely nonverbal as well. (Oh and his button pushing knows no end! He has broke more televisions than i can count!)

    ReplyDelete
  8. Hi, I wrote you before about my daughter, same age as Kyle. And literally everything you say is her. To a T. Some days she understands routine things (put on your shoes)... other things like "put on your pants" and she will go wash her hands. Or bring me a cup. Or just start stressing out with a confused look and try and wander away. I know what you mean though, we have never met a kid like her...like ever. In person anyway. Once in a blue moon I will stumble across a post or a blog (like yours!) that sounds like her.
    By the way, your post on potty training gave me hope that Iza could re-learn it again after 3.5 years of pullups and only going #2 on the potty. And she did! WE are back in undies, which is like Christmas at our house! It is obvious that she gets it (for the most part) and is proud of herself too, which is amazing. So thank you for that.

    ReplyDelete
    Replies
    1. The fact that my potty training post worked for you guys almost brings a tear to my eye and makes this whole blogging thing completely worth it!! So thank you!!

      Delete
  9. I would never say my son was "exactly" like any other child on or off the spectrum. I do believe that Kyle and Kelly's son from the comment above are very similar to my Brandon though. He may only be almost 6, but I would be elated to know that in a few years he would stop and show that he knows we're asking him to do something unassisted even if he couldn't comprehend what we wanted.

    We're lucky that, even though he isn't potty trained, our insurance pays for pull-ups for him. They go through HDIC and we get a months supply Fed-Ex'd to us each month. In IL, the new rules for this is that the child has to have a developmental delay making potty training difficult, be over 4 years old, and have a pediatrician who is willing to write a prescription for diapers. Something to ask about since a lot of people don't know about diaper programs like this.

    Our latest "Way to Go!" moment was when he suddenly learned how to use a straw this month. Our daughter picked it up at around 13 months of age and he is nearly 6 but we were equally excited for each of them when it happened.

    ReplyDelete
  10. I always get the "He doesn't look autistic" when people meet my Jacob, but what they don't see is the stemming or the fact that he is 10 1/2 and we mastered wiping ourselves this year and just last week tying shoes, or that his motor skills aren't like other 10 yr olds. He doesn't do alot of things like other kids his age, he acts and sounds younger. But he is his own 'form of autism' even if he constantly reminds me of my brother who does/did alot of the same things and was never diagnosed autistic and is doing remarkable things now (like learning to speak/read/write Russian fluently for his job!). Most importantly he is Jacob, goofy and lovable, and my little Beans :-)

    ReplyDelete
  11. Thank you, AD. Not many people really understand what severe autism means. Our daughter is 13 and still exactly like Kyle.

    ReplyDelete
  12. I am laughing that my post says "WE are back in undies" (capitalized ?) as if the rest of us weren't in undies. The rest of us were, and now she is. Hopefully that was self explanatory. lol

    ReplyDelete
  13. I still say eating one's own poop is the true mark of severe autism. Once we get past that stage, I will be willing to think about the word "moderate".

    ReplyDelete
    Replies
    1. that is the stupidest remark about autism i have ever heard, and after 13 years with my son i have heard them all.

      Delete
    2. Clearly you've never had it happen. We have. It is terrible.

      Delete
    3. How could you say anything is stupid in a blog? That is someone's true feelings. You should be nice! And obviously you don't know what it is like to have a severe autistic child. Nothing is stupid about autism!

      Delete
  14. My twins aren't exactly like your son. They aren't exactly like each other either. They have some similarities, such as the not understanding demands or the wandering aimlessly at times but they aren't exactly the same.

    I think what people really meant to say is that they recognize a similarity and wanted to let you know that they "get it" a little bit and that you aren't alone.

    We all know Autism is a spectrum for a reason. No two autistic children are alike. The only cavet is a shared grouping of similar symptoms that makes us all sorta like the other.

    Please don't be offended when someone says that in comparison of their child to yours. We're only trying to build a bond because you know how hard it is to be the odd man out and finding someone "in our corner" is always a small relief. :)

    Take care of you and take care of your sweet family. Hang in there.

    ReplyDelete
  15. Thank you for posting this. I have two severely autistic, non-verbal kids that are 4 and nearly 6. I had a blow out with my cousin on facebook the other day. She was accusing me of dooming my boys to failure and not pushing them to succeed because I said,"More than likely they will be on some sort of state/federal aid for the rest of their lives." I had no idea how to defend myself or how to relay how impaired my boys are.
    You did a great job writing this and I'll be forwarding this to her and hope she's not too pissed off at me to read it. If you're curious about the conversation, hop on over to my wall and check it out. It really is like a horrible car wreck: so terrible, but you just can't stop staring.

    ReplyDelete
    Replies
    1. No one can know what our lives our like, or what our kid's potential truly is. Lead your ill informed cousin to get educated. Task her to find therapies, community groups, and special needs sports teams. If she is truly someone to keep in your life, she will redirect her concern to helping find opportunities, not judging your life which is something no one could truly comprehend unless they live it everyday. It always amazes me that people would publish something from behind a computer that they would never say to your face.

      Delete
  16. Yes, thank you. Our son Aaron is our "Kyle". At age 13 we too face many of the same issues (and many different ones too I'm sure). While many of our friend's autistic children are being celebrated for taking part in Special Olympics, reading books, painting, etc. We are excited that he is learning to hang up his coat (opening the closet door and throwing the coat in). But for all of his short comings...is is learning how to express himself on an iPad AAC program which seems foreign to some adults. We just take our own brand of severe day by day and have stopped trying to explain Aaron's autism to most people. Love your blog - something I can really relate to.

    ReplyDelete
  17. I feel like my kid is like a radio that can't get reception. Sometimes the static is much higher, sometimes better. One of the things I'm grateful for is that he can read, and that can usually get through when words can't.

    ReplyDelete
  18. My son Dawson is severe also. non-verbal, Not toilet trained.
    He is 10 yrs old and is classified as about 16 mos developmentaly. He does understand simple commands as get me your cup or bowl etc. He is somewhat of a picky eater but eats nonstop!! He can eat 4-5 bowls of cereal and 4-8 waffles to start his day before school!
    it took quite a while to find a large enough lunchbox for his school lunches , which. consists of 2 sandwiches a green pepper a couple tomatoes, 2 nitrigrain bars, a container of popcorn and some ricecrackers. Then he gets home from school and has 2 sandwiches to tied him over till supper!! Then he has his supper and then a snack. He will have some of my supper when I get home and god forbid I send him to bed with no snack again!!! LOL
    I figured out how much I spend on his diapers and groceries and it works out to almost $1300 a month!! OH And he only weighs 72LBS!
    You can count everyone of his ribs and I buy pants too big for his waist just so the legs are long enough! LOL
    But as for just like Kyle no but very similar in certain areas!
    When I seen the picture of your vehicle I thought it was mine!!! Lol

    ReplyDelete
    Replies
    1. did you hear about the "Diaper program"? Call your insurance company, it cover for kid over age of 3 for diapers. Good Luck

      Delete
  19. My son is pretty close but he will be 17 in jan... and he is severely autistic... he still is not potty trained, he can't be left alone, he requires 24/7 supervision and care... he does say several words only from movies... Hang in there... I use to hear from everyone (Dr's, therapist, school) he never will be able to do this, to do that... but I never had expectations, I just take it one day at a time, and if he makes any new strides i am happy, and if he never gets any further, then I am happy he is where he is. I love him, and I accept him. Days are long and some days are harder than others, but I have 2 with autism, my son and my daughter who is older and higher functioning, so I have my life schedule and organized to best fit their needs, and it works for us. So life is busy, hard, funny, painful, and sometimes crazy, but I can always count on our life being full of surprises... now my baby is 5'7" and 180lbs... he will always need help, but he's my baby. He may be similar in many ways, but he is an original...

    ReplyDelete
    Replies
    1. very cool ;-) i like that, positive acceptance and pride and beauty, he is perfect as he is beautuful and unique

      Delete
  20. I agree with a lot of the posts on here. I believe when people say their children are the same as Kyle, they just mean there are common similarities.
    My son is 9 yrs. old. He is mostly non verbal. Yes, we are lucky Jace can say many words. Unfortunately, he also has severe apraxia, so, very few people understand him. We are also very lucky that Jace's receptive language took off when he was around 5 yrs. old.
    That said, he is not potty trained, he has many issues with eating. very selective food choices. Doesn't use utensils. Still watches all toddler shows. Has no real play skills. Has to have constant supervision. Will most likely live with us for forever.
    But, he is also very happy, very compliant, very sweet. His severe autism is not born from self injurious behaviors and is not violent either.

    ReplyDelete
  21. Yep, I can still say that my son is EXACTLY like Kyle. The closest on the spectrum that I have ever read about or met through play groups. ~Heather~

    ReplyDelete
  22. That is exactly our 9 year old son Max, except you potty trained Kyle, we still have not potty trained Max. Which I could use a little more guidance and information from you on that if you could write about it please.
    But how I describe my son is that he exists. We just guide him through his life everyday and have to do everything hand over hand or assist him! So yeah that's severe!

    ReplyDelete
  23. My son is 13 and is very similar to Kyle. I have had that moment when i finally realized that when i talk he very rarely has any idea what i am asking of him. Show him a picture and he gets it. He is great in that now he can calculate what we may ask him to do depending on the context he is in.

    ReplyDelete
  24. I am so blessed that my son is high functioning. But I have met kiddos like your Kyle. Kids between 8 and 12 that are not potty trained, have zero expressive or receptive language. Wonderful, beautiful kids like your Kyle. And I count my blessings each and every time. Because I know that what I deal with on a daily basis is in absolutely no way close to what you deal with. If he will have it- give Kyle a hig for me. And one for you and the Mrs. too. ~Red Vines & Red Wine

    ReplyDelete
  25. My son is eight and sounds a lot like if not exactly not Kyle. However he's not potty trained. Just know you are NOT alone:-)

    ReplyDelete
  26. Hi Ferris, we understand where you are coming from and are fed up with people saying their kids are severe when they're not as severe as ours. Our boy is coming up 6 and not following instruction, we cannot get him to walk anywhere etc, the list is massive. You were one of the first people we met online with a similar child. Ok, ours is younger but we don't see much progression. Our kids are RARE xx

    ReplyDelete
  27. Hey guys, I didn't mean to sound like I take offense or are bothered when people say their kids are exactly like Kyle. It helps bond us together... I get it...

    And it's only when he has a "severe moment" that I begin to question if there's anyone out there like my Kyle...and based on your comments the answer is yes.

    But I took no offense at all...sometimes I think my off the cuff, in your face writing style gets me into trouble and makes me sound angry or annoyed... LOL.

    ReplyDelete
    Replies
    1. you didn't sound angry or offended to me if that helps to know.

      Delete
  28. Yes, I can say my son is exactly like Kyle.

    ReplyDelete
  29. My son is 16 and needs to have his hand held during soccer to keep on task. He still needs his bottom wiped, still wears pull-up to bed at night, still wakes up wet/messy in morning. Can toilet during day but if not walked through the flush/wash he will not do it. He cannot use the microwave, he cannot pour himself a drink. He can use utensils, but over-stuffs his mouth. He is 16. He too, picks up the nearest object and hands it to me when I ask him to turn off the light, etc. He is 16. So yes, I understand severe.

    ReplyDelete
  30. We have a 16 year old at our assisted living center who sounds like Kyle:-). She's gorgeous, she has severe autism, and we love her the way she is....that's not to say we don't keep working on the self help skills, but we are also comfortable in the belief that she will go as far as she can. But that's what happens when you can be objective, when it's someone else's child. Now can I be so calm about my own sister, who is higher functioning? Nope!

    ReplyDelete
  31. Yes. Thank you for sharing all of this because it makes me feel as if I am not alone, and there are really people out there that understand. We have never met because we are a rarity that live in different states. God has a purpose for our lives.

    ReplyDelete
  32. Yes, it can be annoying to have to directly model, with repetition, every bit of language-based communication. However, that he starts getting anxious when you speak to him shows he cares about your opinion, and loves you... if you start with the model, repeat it often, and show him acceptance for his difficulty connecting the sounds and movements you make with the communication you are trying to create, the fear will reduce and he will start to remember phrase-action linkages quicker. That being said, yes, it is very hard living with someone who doesn't understand your language... for both sides.

    ReplyDelete
  33. Kyle sounds just like my Liam. Except instead of just handing me various things, he would cry hysterically, bite his hands to the point where he's bled, grit his teeth etc.

    I know how you feel when you ask if our kids are really like Kyle. I have never met another child like Liam either and it is frustrating to me when others say their kids are just like mine. Because really, they're nothing like him. They're verbal, fairly cooperative, sleep, potty trained, able to attend school etc. Liam can't do any of that.

    ReplyDelete
  34. My son is 12 and I would say that he is nowhere near as advanced as your son. He is not toilet trained, we cannot take him in public to eat or even to a relatives house because he cannot sit still for 30 seconds, we would have to hold on to him the entire time. There is no way we could ever take him on vacation or have him sit at a table and watch the something on the IPad. He only watches vcr tapes of sesame street on old picture tube tvs because they are so heavy he can't knock them over. He has a one to one aide at school and still they say that they can't handle him, he exhausts the staff. They can't understand how I handle him at home....truthfully neither can I.

    ReplyDelete
  35. Yep, that's mine, too. My eight year old is just like that.

    ReplyDelete
  36. Hey there Kyle's Dad! I too have a son with autism. I have a thought about the turning lights on or off. Different types of lights give off noise and flickering that most people don't notice. I attended a seminar with Dr. Stephen Shore, an adult with autism, who discussed in detail his issues with lighting and how sensitive he was to them as a child. He also talked about how he still deals with it as an adult. One of his books might give you some insight. I recommend reading Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Second Edition by Stephen M. Shore and Temple Grandin (Jan 31, 2003)

    ReplyDelete
  37. My son is almost exactly like Kyle. He is 15 now, has learned to navigate his world a lot better. But he still acts like Kyle. Cannot be left alone. Doesn't understand two steps commands. Often doesn't get one step commands. Has no sense of danger or direction but will find the Hershey's Kisses in any store.
    Nobody understands this situation unless they live with it. I do and will keep reading your posts! Best Wishes :)

    ReplyDelete
  38. I love reading about Kyle. He reminds me so much of my students. I've been teaching students with severe classic autism for several years. They are all so different from one another but they all have some splinter skills. They all can appear at times to be so much more aware than at other times. It's so hard to know what they can really do . So much depends on the ever changing situation. One moment they will follow multi step directions with minimal cues. The next moment they blank out on very familiar one step directions.

    ReplyDelete
  39. Dear Autism Daddy and fellow parents,
    I read this post the other day, but I wasn't able to respond to it at the time, because I felt overwhelmed by what I wanted/needed to say. I really hope you will read my response, because I want you all to hear it so much. Here goes: My son is 13. He is essentially non-verbal. He is not toilet-trained. He's stimmy. He is not aggressive or particularly self-injurious. He's a good guy -- like Kyle, like all of your children. Until the the age of 10, my son also could not complete "two-step tasks," or even one-step tasks half of the time. Sometimes, we felt like we could see sparks of understanding and humor in him, but most of the time he gave every indication that he did not understand what were were asking him to do. The picture Autism Daddy paints of a boy just picking up whatever is closest to him in response to "turn on the light" fit my son perfectly.
    At the age of 10, my son was taught to type by a truly wonderful speech pathologist. Within months (really just weeks) it became apparent to us that our son understood EVERYTHING. He heard everything we said. He could read. He could comprehend what he was reading. He immediately began to write about what it was like for him to live with autism. One of the first things he described was hearing and understanding directions, but not being able to make his body follow them. Similarly, he described the pain of knowing exactly what he wanted/needed to say but not being able to force the words out of his mouth. He typed about the incredible sadness he felt that "no one thinks I'm smart" and that his teachers thought he "didn't have a brain." This was just the beginning.
    In the last three years, my son's life has completely changed. Yes, he still isn't toileting on his own. Yes, he still can't follow simple directions much of time. He still stims like crazy. But also, he's now in general ed 8th grade (with a full-time aide), getting "A"s and "B"s. He tests above grade level in English and math.
    But most importantly, he is able to communicate through typing all that he is, and all that he hopes to be. (And, guess what? A happy side-effect is that he has gotten better at those pesky "two-step commands," now that he can ask for help with them, or can occasionally say, "Mom, why don't you turn off the light yourself?" My son's autism hasn't disappeared. It's still "severe." But, PLEASE HEAR ME: He understood/understands everything! He has deep thoughts, feelings, opinions and ideas. He dreams of getting married and having a job. (Will he ever be able to? I don't know. But he wants to.)
    There is no way of knowing how all of our children will do in their lives. As parents we're all doing the best we can for them. But, please know: our children -- severe or not -- are in there. They may not seem like they "get it" but they do. Don't trust me on this, trust my son.

    ReplyDelete
    Replies
    1. Hi cems -- I've got a question and I hope it does not come across as offensive, because it's not meant to be.

      When your son types, does he do it on his own, or does someone have to be holding his arm (i.e. facilitated communication)?

      I dream of my daughter learning to type one day, and I do believe we'll be able to go there at some point... but I'm extremely wary of putting her in a situation where she'd be at risk of someone else creating words for her that aren't really coming from her. So I look very hard for stories of typing-to-communicate that turn out NOT to require a facilitator!

      Either way, thank you for sharing your son's story.

      Delete
    2. Hi JoyMama -

      Don't worry, your question isn't offensive at all. When my son first started typing, I had the same concerns, believe me. At first, my son needed light support at the elbow, which I've come to understand has more to do with proprioception (feeling your body-in-space) than anything else for him. It was hard for his brain to direct his hand to "reset" after hitting a key, so his hand would want to sit on the keyboard. However, after a few months -- and, I think, partly motivated by teachers at school who had a hard time believing he was writing on his own -- my son was able to type with only support at the shoulder. Now he only needs someone to sit with him and occasionally tap his shoulder or upper back to help his brain/hand connection re-set (and sometimes to redirect his attention if he gets distracted by a loud noise, etc.) Typing is a slow process for him, as he still uses just one finger to type, but his typing is independent. I understand your concerns, and I think it's really important to search out a speech pathologist who has been thoroughly trained in best practices, and understands that the goal HAS to be independence. I don't know where you live, but I suggest the University of Syracuse as a great starting place for information. They've done significant studies on what works and what doesn't -- including how to avoid the situation you're concerned about. University of New Hampshire is also a good place for information, as is WAPADH in Whittier, CA. My best to you and your daughter.

      Delete
    3. How did you go about teaching him cems? Did he master the alphabet before he started learning to type? I'm working on the alphabet with my 10 year old -- but he appears not to understand letters (or their function).

      Delete
    4. Thank you. I needed to read this on a day when my beautiful son seems to be failing his behavioural therapy and is totally locked inside his 3-year-old self. I pray every day that someday we will be past the poop-eating, the lack of understanding, "Where's your toes?", the non-verbal begging for things I don't see, etc.,but at least I know I am not alone...so thanks! Makes my tears of despair a bit fewer today as I watch and love my little man.

      Delete
  40. That's a great and moving story cems. I know that frustration can come from not being about to communicate... It's clear from your post that there is much we all still to learn about autism.

    ReplyDelete
  41. Not exaclty, but then I was never one to claim exactness. However, I can still say painfully similar...

    The cognitive issues, the inability to truly understand my directions without being hand led, the severely delayed accomplishments that most parents wouldn't even notice or have experienced them years earlier...

    Add to that a complete inability to understand when he's used his diaper, let alone potty training attempts, speech that finally broke through after years of painful silence only to turn out to be 95% echolalia if not more, and new rounds of regressions that seem to happen just about everytime we turn around or make it around the bend...

    Yeah... I know severe too. He is not as severe as it can get and I understand that, but he is still severe.

    His little brother even shows a lot of the same things... he's now been diagnosed borderline MR and PDD mainly because he was able to script out some social behavior believingly enough for the appointment/screening (so didn't land in the Autism diagnosis)... I've been asked to get video of him in real situations now. Half the time, my youngest can't even recognize familiar people or get names right. Sometimes not even his own.

    ReplyDelete
  42. yes, my son at 9 years old WAS like Kyle....now, at 11.5, he's doing better...aggression is down, receptive language is up....following demands is less stressful (because NOW, he understands what we are asking)...fecal smearing stopped about a year ago...urinating on the floor also ceased....he still has to be brought to the toilet, but hey, beat cleaning poop off of walls and clothes....so yeah, my son was like Kyle....but, he's learning every day....I think your son will surprise you when things just start to "click"

    ReplyDelete
  43. yep my daughter is 'like' that but she is 19

    ReplyDelete
  44. My son is not like kyle because everyone is different but there are alot of similarities. My son just turned 11 two days ago. He is very much severly impacted by autism as well. He has very little receptive language. He needs assistance dressing and puting on shoes. He is #1 potty trained but no #2 yet. He is detructive. His current behavior now is tearing paper into confetti sized pieces all over the floor and peeling paint off the walls. He can be EXTREMLY agressive. Lets just say we could wall paper our home with incident reports. His diet is pretty limited but some people tell me he eats good for having autism and some people tell me he is not a good eater. He basically eats "beige foods" in the words of his speech therapist. Popcorn and goldfish crackers are his favorite. When I first saw your pictures I laughed soooo hard. They all looked too familiar. It does get really depressing when your child is low funtioning. I love your brutal honesty that most people would not share. Your blog is my therapy! Autism Daddy and Rock Star Autsim Mom are awesome!!

    ReplyDelete
  45. my 10 year old son Jayden is severe like your son but my 3 year old Kiara is less severe and she is on the spectrum but can do more and under stand more then her 10 year old brother. I always put on his IEP for them to work on phonics so he can recognise more items and for then to work on simple commands like get me the _____ or bring me the _____. sometimes I will ask him for something and if he struggles I will ask for it by what color it is. It helps some times but I feel as though if we stop practicing he will never learn and he has learned more then I thought he would and I am proud of every little thing he learns. But the wiping him self thing is a huge battle. Good luck!

    ReplyDelete
  46. i have a few friends that are severe but seem to understand things in there own way.i get very upset when someone asking me qustuion or want me to try something have no clue i still strugggle at times with understanding certin things an i hjave severe learing disbilyts with autism some times it rally hard my bf saw me having a melt down when we were out an wanted to no what was going on an how to help me so sewnt hom something it took awhile for me to come back he say i was gone for a bit he has mild as so he dosnt have the iusse i have his are diff

    ReplyDelete
  47. hi my son Dylan has classic autism. i think what people really mean to say perhaps when they say your child is exactly like their child...is that they are similar....similar would be a better term. if I sound wierd its because I have undiagnosed aspergers imho.

    ReplyDelete
  48. I just want to say thank you.
    My son is high functioning, in your sharing I get how it could be , but realize sometimes my expectations are just that .... Thank you, and your followers. It helps , just to know we ,as a community are vast , amazing in our own, in them amazing but very different.
    I love that we 'get it', accecpt what we have too. Sometimes just laugh at how much /little and cont to fight for what we can ... Just for our kids.

    ReplyDelete
  49. Nathaniel will be 13 this spring, and he is NOT potty trained. Guess you're a lucky man.

    ReplyDelete
  50. I can tell you that my own son who was Dx Severe Infantile Autism used to be like this...especially the stress part with any demands. My supposedly mild kid would go into fight or flight too when ask to do a task. I found that it was mostly because, for my kids but especially my more severe son, the fear of getting it wrong/not doing it right/ becuase extremely focused on the task going exactly as planned. Now for kids I work with I see these behaviors manifest in different ways, so no child is alike but I thin task aversion, static thinking, controlling behaviors/ body shutting down when a demand is placed on them...IS common. For my own kids I spent a few years helping them with a developmental therapy called RDI...I have a utube video of my younger son here....http://www.youtube.com/watch?v=jakn6_RqHB8

    ReplyDelete
  51. Nope, Kyle is not like my son! My son is like my son! :)

    ReplyDelete
    Replies
    1. Well said bright side of life, why are you all making this a contest as to who's child is the most sever its crap, my son is who he is and unlike what I've read on here I won't even let the doctors tell me he will never live independently, ill show them different, it's not about who's child is worse or the most autistic child in the world and comparing against the mans son it's about your son or daughter not his for god sake these kids can be taught I won't even tell u what my son is like as he is like him and as I said autism isn't a competition.

      Delete
  52. Jim (in Northern CA)January 29, 2013 at 3:35 AM

    Out of all the kids I've met in person or online, your son Kyle matches our son's development level/personality almost to a tee. Our son is a year younger and has down syndrome and Autism - yet its the Autism that seems the most prevelent (but combined I consider him to be "severely autistic"). He's non-verbal, does not understand most of what we say, watches a TV/DVD to eat, has various self-stimming activities, loves to watch himself in the mirror and needs hand holding for virtually everything. As you post articles on the blog, there are very few things that you write about that our son does not match in likeness - except for the dog - our son would be a little afraid of a dog. And with all his and our challenges - we love him to death - and just deal with things as best we can.

    ReplyDelete
  53. One thing,I've learned since my daughter - was diagnosed with autism.. Is this!

    All parents, who have kids on the Autism Spectrum - share a bond.

    It is one thing, for me to tell those about my daughter's struggles ; ( who haven't experienced the rollercoaster ride! LOL

    Then another for someone who truly lives in the trenches of autism...EVERYDAY! They can truly empathize.


    Keep being transparent,.about Kyle's journey.

    He is bringing awareness, to what the world needs to be educated about. Through, your words!

    We never quite know, the impact of the things - we say & do... Till months or even years later.

    From one parent, to another. Keep on,.keepin on!!
    .

    ReplyDelete
  54. My daughter is not like the children who are severe. She's what they like to call "high functioning". I think much of that is due to speech. I realize many severe kids are non verbal, or not very verbal. Some days, I'm not sure it matters. My daughter is on the complete other end of verbal. She talks nonstop. But little of it is relavant to anything going on. I might be relating something I got in an email from her teacher, and her reply might be "I saw a cat in the yard, but it ran away." Yes, she can talk. But she can barely converse.

    She does things on her own. I could probably leave her alone all day and she would be fine. Not because she can care for herself, but because she doesn't do anything. She doesn't have accidents, but she won't go to the bathroom unless she's told to. She once went a day and a half without going, because no one reminded her to. I have no idea how she didn't burst, but that's her. She won't eat unless she's reminded. Her day, if left to herself, would be getting out of bed, getting on the laptop - with wireless headphones (best thing ever for a chewer, I went through SO MANY headphones before these!), and sit and watch videos all day. She won't get dressed, go to the bathroom, or eat unless she's reminded. Unless it's a school day. We have such a solid, tight routine, she knows what comes next.

    Sometimes, I regret working so hard to get her to where she is. I hear ALL THE TIME that she doesn't look/seem/behave like she's autistic. If I had left her where she was when she was two - screaming herself silent every day, sniffing people when she was overstimulated, rocking constantly, and only eating peanut butter, severely echolalic....then people would SEE the autism.

    It's a battle no matter where your kid is on the spectrum, it's just a different kind of battle for each of us.

    Soldier on!

    ReplyDelete
  55. My daughter is severely autistic. She is almost 11 and is still not fully potty trained and wears adult diapers most days. She eats with her hands if not reminded to use the utensils. She chews toilet paper. She strips off her clothes in inappropriate places. She screams and yells...usually from happiness. I know severe autism...

    ReplyDelete
    Replies
    1. I just wrote a post but I can't find it. I was talking about this same thing. I have a daughter who is 13 and is an undresser. She can get out of anything. It wouldn't be so bad except she's about 100lbs, with Double E breasts. She also chews on EVERYTHING. Often times I have to check her bowel movements to see what she has swallowed. One time I found two full sheets of paper towels; they where still whole pieces. That must have hurt going down. I used to find toys and buttons and a lot of those stickers that come on fruits. I have even had to take her to the ER after she swallowed a peach pit.
      I have to say that she was born a typical child and, due to a brain infection at age 5, she was left with epilepsy and a secondary diagnosis of autism. She spends most of her waking moments finding things to stim off of. She often has bloody toes, fingers and hands from stimming. I take things away and I hide them but sometimes she does ok and other times she becomes fixated. She does not interact with people, no eye contact and doesn't usually sit still. She has just begun to babble a few sounds. She doesn't turn her head when you call her name, she will take off from the house and wander. I used to get so sad and frustrated that I couldn't connect with her and didn't know how to be her mother. Then, slowly and surely things changed. We spend time together in empty parking lots doing donuts in the car, and she also likes the grocery store. Every few isles she stops, screams and throws her head around, I stop and wait for her to be done and then we move on. I go to the same grocery store every time so that they will get used to us. This is her community as much as it is any ones. It's taken me almost 9 years to get over the fact that she doesn't like to be hugged or touched for that matter. I have finally started to embrace who she is and not who she was and to be the mother she needs me to be. I have often said that she eats she's hungry, sleeps when she's tired and cries when she is in pain. Taking care of her is simple, but loving her is very complex. I can't quit so I will join her world.

      Delete
  56. It's funny you repost this again. I read your page because Kyle and my son have alot of similarities. Everytime I read a post about Kyle I'm in shock not because of what he did but because he did something my son did that I thought was unique to my son and most people would not talk about! Lol.. Thank you for sharing your stories


    ReplyDelete
  57. For those with trouble toilet training, I learned this from my mostly mild autistic child.

    Toilets are LOUD. Loud is SCARY. (and for myself, the sound of running water is very loud, so I assume that's true for her too) Being on the other end of the verbal scale (every thought has to be spoken) she was able to tell me that it's too loud. Until very recently, she actually wouldn't use strange bathrooms unless I went in with her to cover her ears. Now, I think she just waits until we're home. When we visited family a while back, she didn't have a bowel movement for five days (and she's normally like clockwork) because it was loud.

    SO....

    What if you didn't flush it when they are in the room, or taught them to go, clean up, and then flush/cover ears as the very last thing, so they have their hands free and can also run out if they need to?

    Just a thought. I would have never tied sound sensitivity to toileting without her able to tell me...hopefully it helps someone else too.

    ReplyDelete
  58. yes my son is like kyle or i can say even not good like kyle,he although follows a few commands household mainly like come here,sit down pick it up but that too whenever he is in mood ,actually he is veri adamand,he do what he wishes to do n whenever he wishes to do,my son is not yet toilet trained at all which is worst part i m facing now-a-days,i feel so that he is having some medical problem like poor bladder etc.....he is going to be 11 years in a couple of days.......hopefully he gets toilet trained in a few days at lleast he statrs indicating anyway...

    ReplyDelete
  59. My daughter is 4 and has moderate to severe Autism. The first part of this where you talk about placing a demand on him made me chuckle because my daughter does the very same thing. I will ask her to turn out the lights and she will pick up a piece of clothing off the floor and hand it to me. ;) These children are precious. My daughter teaches me so much every day. I took her diagnoses very hard but have come to see her and love her for the beautiful girl she is - inside and out. I am new to your blog but from what I have read so far you seem like an amazing person. Your son is very blessed to have a father (and mother) that love him so much. God Bless.

    ReplyDelete
    Replies
    1. Slow down autism daddy and stop complaining. The fact that your son makes an attempt to communicate and has some words removes him from the definition of severe autism. Perhaps your "mild" autism does not allow you to see this. Good luck!

      Delete
    2. You obviously have never been in the shoes of a parent with a child like this, so shut the _ _ _ _ up. Next time, post a comment about something you actually know something about.

      Delete
  60. I work with people that are severe autism. I've seen pretty much everything, and not just 1 person. My advice to you is this: STOP TALKING! Most Autistic people hate too much talking, especially the one's that are non-verbal. I suggest you take that deeply into account, since it is obvious he only get's you "annoyed", when you ask him to do things. Also Put yourself in HIS shoes! Imagine how You would feel if you couldn't talk, and you are sitting there watching everyone else talk to you and at each other! You would be freaking out. Think about that one. Also, Use more pictures. It would work even better, and even though it's even more "annoying", to take pictures of Everything relevant to Kyle's life, and actual Pictures of him doing things, like "turning off the light", then when you communicate with Kyle, use the picture, be direct and simple, and say what is in the picture that you are communicating to Kyle with. It's just 1 of a million things that I could talk about, but it's a simple solution to a rather "annoying" problem. Trust me, I'm NOT a Dad, but I've worked with and am working with the most Severe of Autistic people, and I get results. Believe it or not I used to be a professional surfer, and I started my career as a private Autism teacher, as a Volutneer, worked at all kinds of schools, and now work with only the most challenging completely on my own and have made more progress, then Doctor's, Therapists, And Most Autism teacher's. I understand people with Autism, and know how to "get thru to them". So enough about me, and just remember one thing, when you start getting frustrated with Kyle. Put Yourself in His Shoes. Something to think about. Communicate effectively, and think outside the box, you'll be surprised to learn that who you think are Experts in the field of Autism, don't know shit. I've seen it across the board. I'm not any better then anyone else, all I'm saying is, if you met me, I'd be the last person you'd think that can effectively work with people with Severe Autism. Never Give Up.

    ReplyDelete
  61. Wow, so great to have your insight. I feel as though I am coming from the other end to the spectrum after 10 years working with typically developing toddlers 1-2 year olds and moving into special education of children with autism. I see that a core deficit is their ability to look at faces for social cues, called social referencing. The other is meeting children where they are at in the current developmental age (12-18 months). When you combine these with creating strong natural reinforcers (like swinging, spinning, touching, throwing, dropping) I am finding some strong gains in developing social awareness and verbal communication. I'm interested to know others observations and experiences with social referencing in interventions you are familiar with. Regards Paul.

    ReplyDelete
  62. This is your future.
    http://www.youtube.com/watch?v=j4PTf7LgsIE
    Get rid of him SOMEHOW now - before he's this big of a problem.

    ReplyDelete
    Replies
    1. How did this commenter get approved on this blog?

      Delete
  63. There are alot of comments on here and this post is from a while ago but I know it is very difficult when your son is the most severe. My son is so sweet but often to me it doesn't even seem like we are all talking about the same disorder. My son is non verbal not toilet trained he doesn't even respond with stress that i have asked him to do something he is a pacer and just keeps pacing he can't even respond to a tv show. Sometimes when you call his name he will look. Anyway it makes me feel better to know tha there are other people who have these same issues with there children. We don't get negative stares from people when we are out because you can't not see that there is something wrong. My point is there are other children out there like Kyle I hope that makes you feel better because it makes me feel better when I read your accounts of Kyle plus you live on the Island which I think is the best place to be if you have an autistic child.

    ReplyDelete
  64. My son is also just like Kyle. He is 8, however. Non Verbal and not toilet trained. He will stand up to go pee every morning, but we are not sure how to potty train him. Can you give me any suggestions? Thanks

    ReplyDelete
  65. My son Drydon IS "Kyle". He's 9 and exhibits each and every behavior you mentioned. My son is always the one who wanders aimlessly without any conscious purpose. I was just scouring the internet in desperate search of help to reach him...anything. Because THIS cannot be his life forever. It just can't.

    ReplyDelete
  66. My son just turned 14 and even among people who have worked in Special Ed for decades, he stands out as severe. As you say, the only child in the group of special needs children who needs his hand held the whole time and all that.
    I don't know how often you read your replies, but I have completely connected with all you've written - most especially the "I don't know how you do it" and the God has given him to you because you're special bullshit - but what do you think of the Autism Awareness stuff? I find it maddening. It's well intended, I'm sure, but the media focuses so much on the high functioning (ie What is Normal Really?) that everyone thinks we are living with Sheldon Cooper or the Rain Man over here and the Classic Autists are the ones who need help. Who probably won't be independent. I can't believe anybody bothers to donate to the research if they think it's all Aspies out there.

    ReplyDelete
    Replies
    1. "and the God has given him to you because you're special bullshit " <<<< THIS. SO MUCH.

      People ask me sometimes what advice I would give to someone without experience with special needs kids, but wants to help. My advice is always..."DO NOT tell them that God never gives us more than we can handle." Not everyone believes in God and it is a VERY dismissive thing to say. If you want to help, offer to babysit. For just an hour. What I wouldn't give to be able to relax in a bubble bath (or poop with the door closed for that matter).

      Rachael

      Delete
  67. This comment has been removed by the author.

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

    ReplyDelete
  69. We have two boys just diagnosed in 2013. Our 3 year old is progressing extremely well and I often times think he just has SPD and is a super brain. But our 5 year old does not speak. Is limited in self help skills. Meaning he isnt potty trained, can but wont use a fork or spoon unless I use backward chaining or he is at therapy. He has some signing and basically likes to pull you to whatever he needs. So refreshing to find a blog sharing the other side of Autism. Being a mom of two who are on completely different paths I can sympathize with the thoughts of feeling on an island by yourself with Kyle. We thought being parents of a micro preemie was challenging but now his autism dx brings us to an entirely new challenge.

    ReplyDelete
  70. I have to say that all of you parents are amazing. My soon to be 6 year old is nowhere near severe and i struggle sometimes with my patience.
    My hat goes off to you all. Keep up the good work.
    Your children are lucky to have you as their parents.

    ReplyDelete
  71. I thought it would be a good idea if my son, Chris, had a job to do around the house. Just one job. I taught him to put trash in the trash can. If I hand him something, and tell him to put it in the trash can he will. If anyone hands him something, no matter what it is, he will put it in the trash can whether it's trash or not. Last Christmas, my mother handed him his present, he got up and put it in the trash can. If I'm sitting across the room and ask him to pick something up and put it in the trash can, he has no clue what is expected of him. He will get frustrated and do a little frustrated hop and make some sort of noise expressing his frustration and start picking up random items hoping he's picking up whatever it was I asked for. This is a fantastic description of classic autism. Thank you so much for witing it.

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

    ReplyDelete
  73. I want to thank you for your blog, I read it and really feel a sense of calm with each post. My 4 year old daughter is Autistic and when I read your posts I don't feel like I'm a failure and doing everything wrong - delaying her or don't giving her what she needs. I don't feel like she is the only Autistic kid that does something - as her school would lead me to believe. I feel like I get good information from a source I can count on. This post really shed a lot of light on asking Samantha, my daughter, to accomplish tasks and her meltdowns. I always tell people you have to lead her to get the right result and they inform me that she CAN do it. Well, yes she can, but help her anyway idiot! I take the time to walk through life with Samantha and encourage her to do things with my assistance and I have realized that she will do more on her own for me than she will for anyone else because I have helped her before. People don't listen to me because I'm just the mommy that coddles her. I'm the mom that cheers for her when instead of taking off her coat and throwing it on the floor, she hangs it up with just my reminder to 'put it where it goes' and pointing to where I want her to put it.
    Anyway, I'm sure you hear stories all day. I just want to thank you because I may not know your life exactly but I can imagine some of what you go through. A thank you goes a long way when you have had a tough day!

    ReplyDelete
  74. After reading that I can say my son sounds exactly like Kyle. He is 12.

    ReplyDelete
  75. I always repeat my command a few times not because of hearing difficulties but because it takes my child a while to process the fact that I have asked something and to try and focus on what I have said with everything else going on around her, I feel that she is permanently distracted with things, so I allow a bit of time for her to think before she acts, she usually is successful in the task, although she can get distracted again during the process, she is 14 now, good luck with finding a good method for every kid really does do things differently but always at their own pace :)

    ReplyDelete
  76. There is no kid the same they all are different in their own way some may have same issues but but we are all different in our own way no my grandson isn't like Kyle but I love your blog it just helps knowing I am not alone on this journey :)

    ReplyDelete
  77. My son is nothing like Kyle, however I think Autism on any form of the spectrum has its own set of difficulties. While my son is considered "high functioning" it is difficult because he notices that everyone treats him different. He notices he is different. This has led to severe anxiety, depression and several times of contemplating suicide. I am not saying he has it any worse or better than anyone else. It is just different and difficult in different ways.

    ReplyDelete
  78. I wish I could reach through this computer and hug everyone on this post. I have two boys - 8 y/o Aspie and 6 y/o with autism. Just this past weekend I commented to my wife that I thought our youngest was severe. He told me I didn't know severe. Don't get me wrong - our lives our rough. We went through our own "summer + fall of rage" with lots of SIB and he currently has tons of stims (the last year has been a constant high pitched scream plus banging objects). However, he is beginning to get some words, he has pretty good receptive and he is learning. I say that not to brag (like that would be bragging), but to thank you all for making me thankful for what I have and giving me hope that things can improve. Good luck everyone. And thank you Autism Daddy - we don't have family or support in town. I often feel alone and your blog helps me a lot.

    ReplyDelete
  79. Yes,you do seem angry or annoyed...and condescending.

    ReplyDelete
  80. AD (and I know this will sound weird), does or did your Kyle have chipping toe nails or finger nails? Does he have really long eyelashes? Have you heard of PM-S (not the kind the ladies get before they menstruate). I have a girl that is like no other kid I have met. Lots of weird things happening there. She has PMSyndrome (22q13 deletion). Just a thought.

    ReplyDelete
  81. I don't have any children but I have a friend with a autistic kid, not "severe". I also work in a group home for MR/MH kids in my town and many of my consumers are autistic. I've seen the "severe" that you talk about. I admire you for working with your kid every day and not giving up. All I can say to this is there is hope and it will get better. My boss recently had me watch a youtube clip about this girl "Carly Fleischmann", she's severe autistic and has managed to break threw in communication. It might not apply to your son, but its informative to watch and helps understand that even though your son is autistic he's still there and he can understand.

    ReplyDelete
  82. Just wanted to share this FYI. The 'wandering' is a commonality. Often our kids are suspect of hearing deficiencies based on this trait. (Also referred to as elopement). There is a great global effort and website called AWAARE.org.
    Fences are even provided in many states now. The first time is too often the worst.
    Please check out that website if you have, know, love, etc...anyone with Autism.
    My own site is AutismBattle.com and I am a great fan of Autism Daddy. For the over 80% of single moms out here doing the Journey without the dads, you are certainly a man for others to look up to. I tried showing your blog to my son's estranged dad and he refused to read. His loss.
    Thank you for your sincere work and sharing.

    ReplyDelete
  83. My son is allot like Kyle, not exactly. But that light switch thing, exactly that. It's like we are on opposite sides of a river, we can see each other but all the communication gets washed away somehow. He wants to do what I ask of him but he legitimately loses all sense of what words mean out of context.Get in the tub means nothing to him unless we are in the bathroom.

    ReplyDelete
  84. I always described my 12 year old autistic son as moderate. I also talk to him like a preschooler when it comes to saying good job for closing the car door, etc. The receptive language eventually came in for him by teaching every basic little thing over and over again, especially using flashcards with pictures on them of light switches, household objects, and everything else, inputting what it was or what action it represented until he could final tell me what it was as I flashed the card. Julie and Tom Meekins of March Forth Family taught me to do these things, so check them out on the web. God Bless you and your wife for taking such good care of Kyle! Thanks also for writing about it so we feel we are not alone.

    ReplyDelete
  85. Hi- My son sounds very much like Kyle, he is 4 1/2 now. He has no interest in toilet training and actually gets aggrivated when we try to toilet train him. Do you have any tips for us to try?

    ReplyDelete
  86. My son sounds like Kyle BUT probably MORE severe!!!! :(

    ReplyDelete
  87. My son is a lot like Kyle. He's 10 and sounds very similar to yours.

    ReplyDelete
  88. I just had to have my son remove his socks.. why? Because I told him to take the garbage out but neglected to tell him to put his shoes on because it was raining..

    I love your posts and your wit.. it reminds me of my travels with my son.. there is a lot in Kyle that reminds me of mine and a lot of thought that reminds me of me :) ..

    Years ago, Elijah would have gone into a fidgety groaning pace whenever he was asked to do ANYTHING.. the processing, for him at the time, was just too much.. and maybe that's where Kyle will always be.. but maybe, some day.. you'll be getting to have him take his socks off too because you forgot to remind him about his shoes as he was getting the garbage out :)

    ReplyDelete
  89. My daughter just turned 7, she was diagnosed as "moderate to severe classic Autism" at 4. She isn't potty trained, has no desire to be so. She is nonverbal, other than very rudimentary gibberish and the occasional "no" or "mamma" or very rarely she'll use a word for something she wants after I've said it twenty times. She picks things up off the floor/ground/shelves/desk etc and puts them directly into her mouth. She found a live garter snake on the playground and bit into it. Yet she won't eat most foods, at all. Won't even try them. Doesn't use utensils. She doesn't follow most commands unless I'm up close and personal with her directing her as she goes. She likes to dip her toys in the toilet bowl and lick the water off of her hands (soooooo much fun with that one, let me tell you). Zero concept of danger, goes right up to strangers, runs right out in the street, etc. I could go on for hours.

    ReplyDelete
    Replies
    1. My son is 16. He is also basically non verbal except for a few words. What he can say is near impossible to understand. Stims like crazy, rocking, moaning, jumping, hand flapping, rubs his fingers together so badly they are discolored and thickly callused, with joint on his index finger starting to get deformed because he presses so hard on it with his thumb when he shakes his fists (another stim). He doesn'tget the sensation of when he needs to go to the bathroom. He will pee in pot if you send him but he refuses to BM in the pot. He peels the paint of the walls. Also has no concept of danger. Would go with anyone, will walk out in front of cars if your not holding his hand. I could go on for hours too! Its rough!

      Delete
  90. I get it, man. No need to apologize, either. My son Ryan is exactly like Kyle, and I have to do the exact same things to get him to do the tasks at hand. He is 8, and we still have a poo incident every-now-and-then. Just this last Saturday, I was shampooing the carpet and washing his bed because apparently he crapped himself and decided he didn't need to go to the toilet or tell anybody about it. He is a happy kid, which I am very grateful for, but it is a struggle sometimes. Hang in there. I am happy to hear you rant or be upset, frankly. I imagine it is an outlet for you, and let's me know that I am not the only one that gets pissed off about it all every now and then.

    ReplyDelete
  91. Hello I just want to say even though this is an old post it really jumped out at me as my son KYLE was recently diagnosed with severe Autism. Awesome name choice for your son by the way. I don't know if you will read this but I just want to say thanks for the post I feel really alone right now and reading other peoples stories has helped me feel like I'm not alone... as friends and family have no clue what to do or say, Some even act differently towards him since he was diagnosed about a month ago, Which really makes me angry he's the same kid he's always been but now because of a label people think of him differently... Not to worry though I LOVE HIM EVEN MORE as a lot of things that frustrated me about him make sense now it's not his fault and I am working on getting him the help he needs, Take care :) Will have to check out if you are still posting I would love to read more -Kelly

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...

© 2011-2018 Autism Daddy / Frank Campagna. All Rights Reserved