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Whenever someone newly joins my blog and or Facebook page I get asked tons of the same questions. So, I thought I’d set up a page for Frequently Asked Questions about me, wife, and Kyle and either answer them here, or post links as to where you can find the answers…
Here goes…
1) HOW OLD IS THE KING??
He is now 12 years old…
2) WHEN DID YOU FIRST KNOW SOMETHING WASN’T RIGHT WITH HIM?
When he was about 15 months we expressed concern to our pediatrician that he wasn’t talking. He said wait till the 18 month check-up and if he shows no progress we will jump in. At the 18 month check-up when he still wasn’t trying to talk he referred us to a place to get his hearing checked. Hearing checked out fine, so then we went thru the series of evaluations to determine that he was PDD-NOS and on the mild end of the spectrum. Thinking back, all the early warning signs were there… He had a big head, he didn’t point, he walked on his toes, he didn’t talk, etc, etc. But as I said he was “mildly autistic”. How he went from mild to severe I wrote about in the blog post…
3) DO YOU HAVE ANY OTHER CHILDREN?
Nope. Kyle is our only child. A very tough decision that I wrote all about in the blog post…
One of our biggest regrets… and a question for all of you…
4) WHERE DO YOU LIVE?
We live in the suburbs outside of New York City…
5) WHAT DO YOU DO FOR A LIVING?
I work in Manhattan in the entertainment industry.
I recently unveiled that I work on the kid’s tv show Sesame Street! read more about that HERE
6) WHAT ABOUT YOUR WIFE? WHAT’S SHE LIKE? WHAT DOES SHE DO FOR A LIVING?
My wife is a Stay At Home Mom (SAHM). Why is she a SAHM? I wrote recently in a blog post that “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…”
I wrote a blog post all about my wife…
ALL ABOUT AUTISM DADDY’S WIFE, AUTISM MOMMY!
7) WHAT’S KYLE LIKE? HOW SEVERE IS HE?
Kyle is what you call classically autistic. He is non-verbal and his receptive language isn’t great either. In both expressive & receptive language he has been stuck in the 15-18 month range for YEARS. He has ADD & ADHD on top of his autism which make learning & retaining things VERY difficult for him. If a task that he learns is not reinforced OFTEN he will lose that task. Because of this and the late regression that he had that I wrote about in the blog post in question 2, I often think that Kyle may have CDD (Childhood Disintegrative Disorder), but even if he does have that, it wouldn’t really change anything so we are not going out of our way to get that diagnosis.
Peronality wise, Kyle has a smile that can light up a room. He can be very affectionate and connected and in our world sometimes…but other times he is a stimmy, flappy, spitty mess. He goes thru good phases and bad phases, like a roller coaster. In April 2011 when I started the FB page he was going thru a particularly rough phase and I wrote a blog post to give people a window into our lives…
Welcome To The Jungle — a window into our lives raising Kyle…
And I wrote a more recent post (in Nov 2012) called “This Is What I Mean By Severe Autism” that talks a lot about Kyle’s receptive language issues among other things…
And I touch on more bio-medical treatment issues in this blog post…
Should I Be More In Touch With My ASD Son? — misadventures in biomedical
9) TELL US MORE ABOUT KYLE’S AUTISM SERVICE DOG? HOW MUCH $$? WHAT DOES SHE HELP WITH? WHERE DID YOU GET HER??
I wrote a blog post that covers all of this…
THE STORY OF OUR AUTISM SERVICE DOG PAULA….
10) DOES KYLE HAVE AN IPAD? DOES HE USE IT TO COMMUNICATE? WHAT APPS DO YOU LIKE??
I wrote a blog post all about Kyle and his Ipad…
All About Kyle & The Ipad…
11) Why do you call him “The King”?
The King is short for “King Shit.” We sometimes call Kyle King Shit. I wrote this as a status update once on my Autism Daddy Facebook Page…
My microwave is broken so I’m currently at my moms house making 6 bags of microwave popcorn to get “King Shit” (Kyle) thru the hurricane.
12) HOW DOES KYLE SLEEP AT NIGHT? DO YOU GIVE HIM ANYTHING TO HELP HIM SLEEP??
I wrote a blog post all about Kyle’s sleep schedule and the magic of melatonin…
All about Kyle and sleep… or why I bow down to the melatonin gods…
I Can Get A Handicap Parking Permit For Autism? Yes You Can!!
Since I’m picking up so many new followers this month, I thought I should add a few more FAQ’s to the list, so here goes!
15) SO KYLE ALSO HAS EPILEPSY??
I haven’t yet written an official blog post detailing all about his epilepsy journey, but here’s the short version…
Yes, in May 2012 Kyle started having seizures…complex partial seizures. He would turn his head to the right side and twitch for 20-30 seconds or so, and then he’d get very tired after…
After 3 days in the hospital getting EEGs, MRI’s, etc. They confirmed he was having seizures and he had epilepsy.
We tried 3-4 different anti-seizure meds (Trileptal, Depakote, Onfi, & Banzel) and he was still having seizures daily… Some complex partial, lots of silent seizures (that look like he’s staring off into space). And the combo of meds was making him extremely tired and zombie-like. So in August 2013 Kyle had VNS Surgery. I wrote about some of his seizure experiences and our surgery decision in the blog post called VNS SURGERY HOW DID WE GET HERE?
Since the surgery we were able to get off one of the meds and he is having a lot less seizures and he is definitely more alert / awake / less zombie like. So win-win so far!
16) WHAT WERE THE CIRCUMSTANCES THAT LED YOU TO CREATE THE AUTISM DADDY FACEBOOK PAGE & BLOG.
On the 6 month anniversary of the Facebook page I detailed how & why I started this whole thing in a post I called, THE GENESIS OF AUTISM DADDY
17) HOW DID YOU ACCEPT THE FACT THAT KYLE HAS AUTISM? / YOU SEEM TO HAVE SUCH A POSITIVE ATTITUDE, HOW DO YOU DO IT?
I get asked this a lot and I tried to answer it in the blog post called, “The 3 questions I get asked on my page over& over & over. You may not like the answers…”
18) CAN YOU PROMOTE MY PAGE/BLOG? OR… CAN YOU GIVE ME ADVICE ON SOMETHING? …OR… CAN YOU REVIEW MY AUTISM BOOK / PRODUCT? … OR…WHY DON’T YOU SEEM TO ANSWER YOUR EMAILS OR RESPOND TO READER COMMENTS & QUESTIONS…
I most likely can’t / won’t promote your page or blog. I usually don’t have a lot of good advice to give… I probably don’t want to review your autism book or product… I don’t answer most of the emails, questions, comments I get…
Why you ask? You can read the answers in the blog post entitled…
19) SO ARE YOU MAKING ANY MONEY / TRYING TO MAKE ANY MONEY WITH THIS BLOG OR THE FACEBOOK PAGE?
I didn’t start this to make money. I started it as a place to vent. And 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…. So there’s 2 ways that I make a little money with the Autism Daddy persona.
–I make a few pennies every time someone clicks on the ads on the top left & top right of the blog.
–The other way I make a few bucks is as an Amazon Associate. So if you shop on Amazon.com please enter Amazon by using this link…
You can make a paypal donation to me at the top left or right here…
I’m not begging for money, but every dollar helps, and with a special needs kid you can never have enough, you know?
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That’s all my FAQs for now. Please let me know if there’s any other questions that you have in the comments below or on my Facebook Page and if it’s appropriate and it doesn’t hinder my anonymous status I will add your question to this FAQ page and answer it to the best of my abilities…
THE END
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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!!
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Liked your post. I do hope your child comes out of this. As a mom of a almost recovered child I find that doing 1 therapy at a time sometimes does not help. Doing things together may be the key. I had done MB12, P-5-P, Folinic acid, DMG together with TLP and vision therapy. The combination worked wonders. I do know though that each child is different. Good luck on finding the right combination. Melatonin worked wonders on my child also. Got our lives back. I do try a sleep routine though.
I can relate so much to your experiences with your son. I also am the parent of a child with regressive low functioning autism. He is only 4 but the window of time for improvement is getting smaller. It certainly is not easy and can make me very sad at times. We have tried many biomedical treatments with no success. Early intervention (started at 16 months): behavioral, O/T and speech therapy seemed to make an impact and then he regressed and continues that pattern. Two Steps forward and three steps back are the trend and we don't know why. Mood swings that are not predictable… I know I am preaching to the choir:)
It's nice that you have this post for parents with kids that are different…even from other autistic kids. Good that you are supportive of your wife and son. That is so important and something I wish we had more of on my end. We just do our best and keep the faith no matter what lies ahead. We will do whatever we can to help our son develop as much as possible. Next step is mood meds which I wanted to avoid but it seems like the next best option for him and us despite my fears regarding side effects.
My daughter is 3 and we’ve kind of known she’s on the autistic spectrum since she was 2 but since she was our first kid it was hard to tell how off she was. At first they said it was MERLD and we had her screened by the local school system but nobody really blurted out autistic without a “maybe”. She ran around more than the other kids and tested poorly across the board which really knocked my expectations for her into the basement. Still have yet to get that score or whatever it is that tells you how bad it is. I notice most parents say their kid is high-functioning or low-functioning with few in between the extremes. My daughter is a little verbal as can remember nursery rhymes but can’t converse beyond very short sentences and is only now beginning to say “I” instead of “you” for everything. One kid at daycare asked if she could talk. She does well with flashcards (she identified an apple pie as a Papa John’s Pizza to her examiners) but shreds books and magazines. She has a 1 year-old brother who seems weird to us because he doesn’t act like his sister. He doesn’t seem to be autistic. He reminds to wash my hands with wall dispenser (he points to it) when entering the daycare and enjoys helping out by removing the clean dishes from the dishwasher. He and his sister both had big heads (my daughter had a CAT scan) and my son reminds my of an old cartoon of the Martian kid swapped at birth with the human. My wife is obsessed with getting the kids to sleep at reasonable hour but it has rarely happened in the last 3 years as they refuse to sleep unless they sleep in adult beds with mommy and daddy sleeping in separate rooms. How severe is my daughter? She’s not potty trained and has zero interest the potty. Shutting her in room results in her casting off her diapers with the poop dumped on the floor. She thinks she’s smart putting her pants back on but they are backwards and inside out. I read on the Internet that you can train your kid to leave the diaper on or tell a parent if they take a dump by showering cold water on the offending body part for a minute. That never worked for my kid and she never seemed to be bothered by the cold shower. She pulls out the vent cover and tosses it around the room and loves to hear it hit the door. Coughing makes her cry (couldn’t find that even on google). She’s fascinated with insects and spiders. We put 1 lb. leg weights on her with duct tape but she still jumps around. She runs into the woods and won’t respond if you call out her name and I understand that’s common according to rescue personnel. She doesn’t have physical problems beyond pointing at every crease or blemish on her body as a cut, mosquito bite or bruise. She tip toes, flaps her hands and climbs up dressers using the drawers as steps. She doesn’t eat lunch or sleep at the daycare. My daughter has OT and ST sessions once a week. About the only thing I’ve heard so far that helps is early intervention and we try to get to learn something when she’s focused on something. I’m surprised the therapists always stress eye contact when my daughter usually responds if you tell to touch a body part if she hears you. I think she can learn more but she can’t even get out of the 2 year-old class at the daycare because she’s not potty trained. There’s a few movies I haven’t seen before with autistic people: The Black Balloon, Wretches & Jabberers and Fly Away (haven’t seen it yet). Welcome to the wonderful world of autism.
I hope you write a book. I can read all your stuff here, but could buy several copies to give to freinds and family that always want to give advice about what we should do during meltdowns etc. My father in law actually suggested "that boy just needs a good ass whipping" or another family member who hounds him to death to follow procedure and ends up making somthing very trival into a horrid meltdown. I am so thankfull to have found this, now I don't feel like such an ass for feeling like I do. You mostly make me laugh and I just found out why you call him king and it makes all of this even better. Thanks for all of this!
I know you've heard all the suggestions before so I'll try and be a little novel. You frequently mention Kyle has a selective diet. Have you tried getting an inventory list from wherever you get your food? I mean has he tasted everything in the store? You could check off the items as you go. It doesn't have to be every brand of a particular type of food so it's not like you'd have to empty the shelves and he's gotta eat anyway so this can be a long-term project. I apologize if you've heard this idea too many times before but after reading most of your blog (plus Youtube and movies) like a autism junkie who always needs another fix, I'm not sure what else to do and reading about other families helps give me a wider perspective on this maddening condition our kids face.
I have a 5yo nephew on the asd and melotonin is like candy for him. Sometimes he falls asleep for a little while bu not for very long and then its a fight and his whole day is off, especially at school. Any suggestions on what else to try
Chlonidine for my son for ten years. Ask doc
I agree with Clonidine HCL. It works for my 10 year old son, also with and ASD. He has been on it for the last two years. Without it, he has a hard time falling asleep, because he takes Strattera for his ADHD.
I just stumbled upon this, and I just wanted to take a second to thank you. I don't know why, but reading about things that are similar to the ones my family and I go through help.
I have 4 boys with autism. Two high functioning, two low. One of the high functioning has renal failure as well. One of the low functioning has a seizure disorder. Been there, done that…..you go! Love the King Shit. Yes, your life revolves around the meltdowns, obsessions and routines.
Hi, I'm a 58 year old father of a boy who will turn 4 years old on january 19 his name is Josiah, he as well is an autistic child. When he was born he was developing well he was doing everything a child his age was suppose to be doing. When he reached the age of 1and a half I notice that he started doing strange things, like continuous spinning around, sitting in front of our washing machine while it was spinning and watching my
neighbors fan go round and round. At first my wife thought it was funny and I told her something is wrong
with him but she dismiss the thought. Then we notice a new thing he started making weird movement with
his hands and he wouldn't make eye contact when we spoke to him, but my wife dismiss the thoughts. By this
time Josiah was saying a few word but was unable to put a whole sentence together. He would point to things
rather then say what he wanted, it was becoming a concern to me. So one day while at his Peds doctor for his yearly check up she told us about her concerns, that she has notice no improvement in Josiah's speech and his lack of eye contact. We dismissed the thoughts and took him back home like if nothing was wrong with
him but as time went by he started to show us that he was smarter then we thought he learned his ABC he
was counting from 1 to a 100 not only forward but backwards without missing a number. We were amazed by
this. He also start to say alot more site words but yet he was unable to form sentences but we thought he was
a genius. When I would take him out side for a walk he would tell me every number of every building he
passed by. Again it amazed me but yet I knew something was wrong but didn't really want to believe it. When
we took him back to his Peds doctor she strongly suggested that we get him evaluated so we did. The
moment the doctor saw him he told me that he was a million dollar kid but he didn't know what to do with it.
Its funny because the same doctor that evaluated my son, I had done a favor for one of his student's and he
remembered me. So he told me not to worry that he would get the best treatment for my son, I thank him so
much. While all the process started I continued to deal with Josiah's needs. I started to break his routines,
changing the things he did, took him to different places introduced him to sports like track and exercising. I
notice that by changing his routine on a daily basis he started to focus more and his eye contact was coming
back we were so happy. We then went for the second part of the evaluation where he was diagnosed with
PDD-NOS a mild form in the autism spectrum, they told us that with the proper help hopefully he will break out of it and he could funtion in a normal setting. With the help of everyone involved and my lovely wife we got
him in a small setting class because he was not doing good around alot of people or to many kids but he is
adjusting at his school Kennedy Child Study Center, he loves it there. Josiah loves the ipad, iphone, he likes
trains, buses, leggos and anything that has to do with numbers. As a father I ask you don't give up the fight for
your child always love him unconditionally these children are special to this world and have there purpose in
0life. Sorry for Ranting to long lol.
God Bless You . Just Another Father. 🙂
I dig your anonymity…just as you like KISS, I like The Residents who do the same thing, and have been more or less anonymous for 40 years!
I just wanted to thank you. I don't know why, but reading about things that are similar to the ones my family. Having a child with Autism is working hard but It's a gift from Allah (God), so we've look forward for the bright future to our kids.
I feel as if our lives are mirror reflections of each other. I am a 44 year old father of a 9 year old non-verbal autistic son. My amazing wife and I live in the Hudson Valley north of NYC. Our son's autism presents itself in an identical manner to Kyle's. One of the statements you made really resonated with me (ok, they all did!). I too feel that my involvement as a dad is much greater than most fathers. I am a teacher and it hurts me to see how little some of these fathers (won't call them dads) with neuro-typical children are involved. Thank you for creating this site. My wife was in tears as she was reading from your site to me. I think it helps her understand better what's going on in my mind.
As a Mom of a not even close to recovered son with autism & seziures, your blog is heartwarming. You have a wonderful sense of humor. Thanks for helping me just get through another day. Today, was a shitty one for my lit guy. Tummy bugs suck but I knew you could cheer us on to keep on going! Ty!
http://masgutovamethod.com/
I feel for Autism Mommy. When I got my son services, I wasn't working. We recently moved states so I could take a good job. I now don't know how I will ever get to tall the meetings to set up services again. Unfortunately, while my boy's daddy is incredibly involved in the day-to-day care of our son (he does most of it, in fact) and getting him to appointments, officialdom kind of scares him. Even if he goes to a meeting, he will call and ask me 10 million questions. So, it's easier to go myself.