Last night on my Autism Daddy Facebook Page I opened up the
floor for all of my followers to ask me simple yes/no type questions. This was a
chance for y'all to ask me all those things you've been dying to know about me,
wifey, and Kyle.
It was a lot of fun and I answered tons of questions, but
with the way FB comments work it got very unwieldy and out of hand very
quickly.
So below, for your reading pleasure, I'm going to repost all
the questions from FB along with my answers.
And if you have any other "simple" questions for
me please ask them in the comments below this blog post and I'll try to respond
directly to your comment as quickly as humanly possible.
I know I normally don't always respond as much or as quickly
as I should to comments / questions on FB & the blog. I wrote about the
reason why HERE. But this time I promise to respond as much as possible.
Ok, without further ado, here are the 31 questions.
1) Does the
stimmimg drive you mad?
Depends on the stim..., but yes many do...
2) Do you love
your life?
4 days out of every week yes, 3 days no... :-)
3) Can you
always tell the difference between behavior that is a result of autism, and
normal childhood behavior?
Nope
4) Did you
decide not to have more children out of concern that there is a genetic link to
autism?
YES , I wrote about that HERE
5) Does Kyle do
any therapies?
YES
6) Does the
autism ever "spoil the mood"?
YES, autism ruins the mood a lot around here… ☺
7) Does it ever
get any easier? (from an exhausted, emotionally destroyed and overwhelmed mom
of a 2.5 year old on the severe end of the spectrum)
Yes it gets easier... Then harder, then easier
8) Does your
wife ever come on the blog?
Yes my wife reads the blog and FB page and even comments
every once in a while.
9) Does Kyle toe
walk?
Yes, sometimes.
10) Have you ever
fantasized about Princess Leia in the gold bikini?
Yes of course!
11) Do you have
any other pets besides Paula?
Nope, just Princess Paula.
You can read more about Paula HERE
12) Do you ever
day dream about what your life would be like without Autism?
Yes I do.
13) How much guilt
do you have about not doing enough for your child?
Lots of guilt.
14) Do you realize
that all of us women have a secret crush on you???!!!
(blushing) Yes… ☺
15) Has kyle ever
been suspended for aggressive behaviors at school?
No, not for aggression.
He was thrown out for holding his breath too much. Read about that HERE.
16) Does your wife
get jealous of all the time you spend on here?
Jealous, no. Annoyed,
maybe. ☺
17) If you could
cure just Kyle of one thing, autism or epilepsy, which would you choose?
I’d cure the autism over the epilepsy every day of the week.
18) Do you listen
to Howard Stern?
I LOVE Howard!
19) Did your son
ever smear poop?
He hasn’t gone thru a poop smearing phase… yet…
20) Has kyle ever seen
you have sex?
No…
21) Have you ever
had any dreams where Kyle could talk?
Nope
22) Have you ever
considered Hyperbaric Oxygen Treatment to treat the autism sypmtoms and
epilepsy?
We tried the HBOT years ago, before the seizures and del it
did nothing for the autism... and is way too expensive to try again... but the
seizures have been better lately...
23) Do you wonder
what Kyle will be like when he gets older and if it will get easier or more
difficult?...
Yes I wonder and I expect things will get more difficult
24) Do u think pot
should be legalized?
Yes!
25) Do you watch
Touch?
No
26) Do you ever
purposely take extra time to get home, so you can have a longer break from the
craziness?
YES!! Before my antidepressants i used to do that a lot...
not as much anymore... but some days, yes
27) Are you young?
You guys seem young with all you do with him. Lots of energy. I used to be like
that!
I'm 42 years young... but in my brain i think I'm about
25...
28) Do you have a
special needs trust or will in place?...
Yes a will and a special needs trust. I wrote about that HERE
29) Have you ever
been to a dan dr.?
Yes... we spent 3 years trying lots of diffeent dan dr stuff
with no improvements... we are taking a dan dr break right now... we may go
back some day...but for now a nice break
30) Does Paula
sleep with King Kyle?
Yes
31) Do you think
it is harder to have a non verbal child ....or a child that has so many words
but cant communicate at all ... ?
As a parent of a non verbal child of course i think non
verbal is harder.... i just want to hear my kid talk... just once!
That's all I answered last night. So now, it's your turn. Any more questions for me?
:-)
Follow-up to question #4: So are the "four days you love your life" Tuesday through Friday? :)
ReplyDeleteHa ha :)
DeleteNo I just meant sometimes I love my life, sometimes I don't but the love times outweigh the nonlove
Knowing how hard it is to care for one special needs kid, what advice would you give to parents with multiple special kids? And how long has Kyle been taking melatonin for?
DeleteDo you ever find it hard to be friends with a parent of a neuro typical child?
ReplyDeleteNot hard but lately we have more fun with other autism parents...
DeleteI have a couple questions
ReplyDelete1. Do you ever wish Kyle didn't have autism?
2. Are you jealous of other neurotypical families?
3. Are you ashamed to bring Kyle to normal activities?
1 yes
Delete2 yes
3 not ashamed, but we pick and choose our battles of which normal activities to do
Would you ever consider 'outing' yourself fully and letting your readers know exactly who you are, or would that be too much spotlight or overwhelming?
ReplyDeleteI'll out myself when I write a book or when the movie version comes out. Basically I'll out myself if it involves a big payday for ol ad. Otherwise I'm staying in the closet. :)
DeleteI love reading all these! You have a fantastic sense of humor!!!
DeleteKathy
What is a dan Dr? I'm a single mom to almost 3 year old boy/girl twins & my son is on the spectrum. We are new to this and appreciate your knowledge & advice. Thank you for your boldness in willing to share what you all go through. You have been an inspiration
ReplyDeleteHere's some info on DAN doctors.
Deletehttp://autism.about.com/od/alternativetreatmens/f/dandoc.htm
I love this! I love this! Great idea. I love "Do you find it hard to friends with parents of NT child?" Sometimes I do, and I have an NT child too!
ReplyDeleteWhen you and the wife go out for your "selfish" time (Which is awesome I do it as well lol) what are your cocktails of choice?
ReplyDeleteBeer for me and Malibu on the rocks for wifey
DeleteHi AD love your work! I've just started on those magic white pills :-) so far much better than ssri's. My question, have you had a problem with insomnia?
ReplyDeleteI think in the beginning I did a little. I had to watch my caffiene intake along with the wellbutrin but after a while it settles in nicely.
DeleteGlad it seems to be helping you!
Does Kyle sleep through the night (by himself)and is going to bed an easy thing? What is his bedtime routine? We have tried Melatonin but I was finding that my 4yr old daughter would wake more when taking it. Since she started school it has gotten better but she often wakes screaming/crying and will only go back to sleep with me. Sometimes we are up for a few hours. We have started letting her play with my andriod phone in bed til she falls asleep. (of course me next to her) (hoping to get an ipad but with a husband who is on diability with a broken back and me at home taking care of things and two other young kids one of which may also get an autism Rx things are beyond tight) Anyways just looking for some tips on getting some extra zzz's. Thanks......Vall.....p.s. Love your page and attitude you have a beautiful family!
ReplyDeleteyes he sleeps thru the night... he went thru stretches where the melatonin would only work for a few hrs and he'd be up at 3am, but we continually tweak the dose and it + other meds he takes for seizures have him sleeping 10+ hours a night lately!
DeleteMy son has some words, but has no communication skills. Most of what he says doesn't have anything to do with the here and now. Mostly things that are circling in his head from any earlier experience (I think). So he screams/yells ALOT. Wether he's happy, sad, mad, whatever. I've seen some videos of Kyle "eeeing" is that all that he says or does he also scream/yell?
ReplyDeleteno real screaming or yelling.... just eee-ing and other related sounds... he's been pretty mild mannered the past few months (knocks on wood)
DeleteHave you ever had genetic testing done for Kyle? We did for my son and discovered that he has a deletion on one of his genes. It is 22q13.3 and they are doing clinical trials of a growth hormone at Mt. Sinai hospital in New York that has shown some promise.
ReplyDeleteyeah, we did some genetic testing i think... there was so much stuff years back, it's all just a blur, but im pretty sure we did genetic testing and they found nothing
DeleteHoping it will post this time.
ReplyDeleteHave you done genetic testing? We have and found out pten is what caused our sons to to autistic.
yeah, we did some genetic testing i think... there was so much stuff years back, it's all just a blur, but im pretty sure we did genetic testing and they found nothing
DeleteHow do you handle people who seem as if they don't get what you're going through as a parent of a child with Autism? I don't just mean random people, but family members? We pretty much stay away from those who make us feel as if we're on a desert island in our journey with this, but it's harder with family. You've mentioned your family is great but ours isn't. What's your advice on it besides what we've been doing in keeping our distance? I adore your blog and Facebook page, btw! Please keep writing :)
ReplyDeleteThat's not a simple yes/no, one sentence type question! ;)
DeleteNo real advice for you since everyone in my family "gets it"
Maybe email them some articles or blogs that you think will open their eyes and help them better "get it"?
I apologize about it not being a one sentence, yes/no question! I forgot about the rules.
DeleteThank you for the tip though. I think I'll do just that :)
I'm on the same boat you're on. The only family that "gets it" is my parents and siblings and my husbands mom. My father in laws family is the worst. They say he just needs discipline. And make comments about how he should be potty trained by now (he's almost 6). The list goes on. We just keep our distance. My family loves him for him. We keep the positive people in his life. If they can't accept him the way he is, then they don't deserve to know him. They are the ones missing out on a very happy, loving boy, he's isn't missing a thing :)
DeleteDo you ever get so frustrated that you sometimes wonder what your life would be like without King Kyle?
ReplyDeleteYes, tough to admit but yes.
DeleteMore often I think back to before we had Kyle and think about all the STUPID things that would stress me out back then. That guy in his 20s didn't know how good he had it! :)
repost from facebook
ReplyDeleteok off the cuff but Im in New Jersey and I speak at the local college here..have one coming up in March...and well if I could arrange it, would you want to speak at a college, we can talk about the angle later lol Oh here is my website (yeah Im a parent of 2 who were dx on the spectrum and an RDI consultant) http://autismremediation.com/?page_id=7 Seriously, I could get you some gigs hahahaha
I guess now would be a good time to ask..have you ever tried RDI for the KINg! I ask because my younger son was sx severe and RDI was foundational in helping him...and while I know every child is different...just thought I would ask...since, well eh you asked :)
DeleteKathy I might be interested in speaking at a college in NJ. However I will AD admit that I am much better in print than speaking off the cuff in front of people.
DeleteAnd no we haven't done RDI with Kyle. Do I lose the speaking engagement because of that? lol :)
HA well would it help if I told you I almost passed out, threw up, etc the first time I had to speak? I too am better at writing then speaking! BUT, You have a message...an encouraging one that we are in this journey together, relating to one another! My message was more of a been there with all sorts of different therapies, and this is what helped sort of thing! AND well, I think we all need to have everything out on the table so we can make decisions for our family. Anyway, nope, you have lots of fun to bring to the table ( we parents need HUMOR !) but I will say, Why the fudge NOT! ( TRYING RDI :)) So practice up on your speaking and Ill have a chat with my connection for the fall ( you think Im kidding! :))
DeleteIve always wondered what kyle was like as a baby? Looking back were there signs you guys missed as an infant?
ReplyDeletehe was a great baby... always happy never cried... hit all his physical milestones but he was always autistic i think... big head, walked on his toes, didnt point...
DeleteI have a 3 yr old with high functioning autism, HUGE toe walker...but Im starting to think my 1 yr old may have severe autism...he 2 is a very happy baby but does not interact with us very much, doesnt point, doesnt clap, still no intrest in walking, and very recently started flapping...Love your blog and fb page keep up the good work :)
DeleteHow have you handled the stares the rude comments, do you have a snappy comeback or do you say nothing back.i get annoyed with why dont you spank him,why is he screaming, when at wanart, had to hold his foot because he jumped out if the cart.and u was at the check out.ny husband had to carry him out if a store over his shoulder and a cop questioned why he was being carried out that way.explaining hes autistic.the cop said it wasnt good parenting.so my major question to you besides the rest is what would you have said to the cop?it says anonymous but its from S sylvara
ReplyDeletesara, we've never really gotten rude comments... i wrote a post called "Where Are All These Mean People" about that..
DeleteMaybe its because the king is so sever and its obvious that he is different when you first meet him... maybe it's because we live in a big metro area... or maybe people are staring and saying rude things but we are in our own world and oblivious to it?
My son takes melatonin but it doesn't really work. He's now on a melatonin break then going back onto 10mg a night. Have you ever had any problems with it?
ReplyDeleteWe always tweak the dose. There's been times where 25 micrograms is all he needed and other times he was up to 9 milligrams. Currently he's on 1.5 milligrams.
DeleteI'm clearly not AD, but we use melatonin and have had great success with it. We only use 3mg-6mg (different children) you may want to try switching brands--melatonin is a supplement, so it's less regulated than other medications, and our pharmacist says that means there may be more or less medication in a particular dose. I just picked up Natrol, because it was on sale, and I'm honestly not certain that it works as well as our old brand. I'm not ready to give up on it, though, because it comes in dissolvable, flavoured tablets that the kids like :P I have heard that melatonin doesn't work for all children, so if changing your brand doesn't work I'd talk to the pediatrician. Good luck!!
DeleteYes brand does matter. We tried store brand...got a better pharmaceutical grade at the vitamin shop ( :
DeleteWe used to use Spray here...I still have it around for when I need to the kids to go to bed :)
DeleteHow do you train for races, with working, supporting your wife, the activities Kyle does on Saturdays?
ReplyDeleteMy training sucks. I'm lucky if I run 3x a week. Twice during the week during lunch at work and a long run on Sat or Sun mornings. The wife is cool with it cuz she knows the running and races keeps me happy.
DeleteDo you think (in our lifetime) they will ever find the cause and/or a cure for Autism?
ReplyDeleteCauses yes, cure no
Deletedo you consider yourself a spiritual or religious person? I know most of us can't get through church but often pray....just curious...
ReplyDeleteNo, not spiritual or religious. And I've been that way long before Kyle. Just lost my taste for it years back. I'm the black sheep of my family in that way. They are all good practicing Catholics. Nothing against it at all. It's just not for me. :)
DeleteCan kyle play outside with out you being with him? We have a fenced in yard.but hes clever.he found a way out.time to repair that escape route.
ReplyDeleteDo you have a way to keep track of kyle if he gets away from you? Like a braclet a necklace or a pin that has his information on it.
We have a monitor he wears on his wrist.
No we can't trust him to play without an adult present. We don't have a tracking device on him...yet. Right now basically he's never out of our sight.
DeleteWhat are your thoughts about a residential autism school like andersen center. Down the road would you ever consider this alternative when you are older?
ReplyDeleteThe wife wants to keep Kyle living with us as long as we are physically capable of caring for him. But we have to make arrangements for after we're gone. So I think he should move wherever he's gonna live after we die before we die...if that makes sense.
DeleteSo we just have to know exactly when we are going to die. :)
We were told by the ddso to put our son Brandon on a home list because the wait is so long in downstate ny. They told us we could always say no. Thanks for your reply.
DeleteRepost from facebook: Is your house as messy as mine? I have a hard time keeping things tidy now :| I feel bad for my husband as he works during the week!
ReplyDeleteyes our house is quite messy... sometimes we invite family over as an excuse to clean...
DeleteHow many boxes of Cheerios and bags of popcorn do you go through in a month?
ReplyDeletewow great question! i'd say 10+ boxes of cheerios and maybe 10 boxes / 30 bags of popcorn...
DeleteHave you had Kyle tested for Fragile X Syndrome?
ReplyDeleteProbably already answered... I finally finished through all of the questions asked and see that you did have genetic testing done. Good. So many don't and/or don't know about/believe the Autism/Fragile X link.
DeleteWhen your wife was pregnant and you thought about being a parent. What was the one thing you had always envisioned you would do or teach your child as a father - you have my done it with Kyle? For my husband it was teaching his son to ride a bike.
ReplyDeletei just always envisioned introducing my child to all my fav stuff... 80s movies, music, etc...
DeleteWhy don't you like to show the king's face??
ReplyDeletei just like to keep things private for now...
DeleteWhat kind of seizures does Kyle get? My asd son used to have complex partial seizures before his surgery.
ReplyDeletewhat age did he have his first seizure?
his first seizure was just this past may 2012... he ha just turned 9...
Deletethe scary ones are the complex partial.. he has those sometimes and then we tweak meds... he's also had silent seizures that look like staring off...
his form of epilepsy may be something called Lennox-Gastaut Syndrome
I read a post about Kyle and sign language. Is he still doing this and if yes, how is it going?
ReplyDeletenot much progress with signing... they are working on pecs with the ipad but it is a slow go... he's not interested enough in communicating as bizarre as that sounds...
DeleteDoes Kyle have a specific condiment he has to have with his meals?? My daughter has to have mustard,especially if I want her to eat any kind of meat
ReplyDeletenot a specific one... but the wife mixes up an awesome honey mustard concoction that he likes on his chicken these days... :)
Deletehello, i'm staying anonymous on here. I have a child he is 5 years old and severely autistic, he still doesn't talk, and just got out of diapers finally. we have no help from anyone in my family, I only have my mom, my dad and I don't speak, and my husbands mom and dad don't speak to him either, all we have is my mom, and she flat out refuses to watch our son, says "he's too much" me and hubby have never been on a date in the 8 years we have been together, and have only gotten 20 minutes to ourselves in the last 5 years "literally" I guess my yes/no question is, do you ever feel like giving up? like do you ever feel like what you do is never good enough? I blame myself for my son sometimes, I have severe depression, and anxiety, and some days I just can't cope, I sit in my room all day and cry. i'm not gonna sit here and say "I love my son and wouldn't change him for the world" because frankly that is a bullshit statement. I love my son and would do anything for him, but I wish he wasn't like this,I get sick and tired of wiping poop off the walls everyday, or off the walls of the shower, or wherever he can "draw a picture" and I often ask myself, why me? why my son? is this selfish of me?
ReplyDeleteHi Anon - I just wanted to reply to you. I am so sorry that you have no help. That is really tough. I am not in your situation but I can say that I feel like giving up at times too. I think it's ok to feel that. Don't feel bad. You are going through a really, really tough time. I wish I was near to you so that I could give you an evening off with your husband. Big hugs to you.
Deletesorry to hear about your struggles anon... :-(
Deletewhere do u live? could u maybe qualify for some respite services and have someone watch him for a few hrs per week so you can get a break? have u ever looked into that?
we live in rural Indiana, there is nothing around here we have to drive almost 2 hours one way just to get to his Dr. so yeah, not many options.
Deletewe live in rural Indiana, we have to drive 2 hours one way just to get to his dr. We have researched this area and there is nothing around here for autism parents or children, Indianapolis is the closest place with anything, and we can't afford to move either, so we are kinda stuck.
DeleteIs Kyle stubborn with certain things?
ReplyDeletehe's stubborn in his complacency... i often feel like he doesnt make much progress because he's not frustrated enough to want to communicate / get his point across...
DeleteYes, that's what my thoughts were while reading your posts. That's better than some kids I know who are so stubborn that you cannot work with them. All the kid wants to do is watch video and EAT. Try anything else and you get a smack across your face (or a broken back). Yesterday I got him to take off his coat all by himself. well, almost. he's nine. :(
DeleteDoes Kyle take showers or baths?
ReplyDeleteHe takes both.
DeleteYou talk about your marriage being strong through all of the challenges you face with Autism. Do you and your wife ever disagree on how to handle certain things with Kyle? Does it ever put a strain on your marriage or push you both apart?
ReplyDeleteWhat kind of supplements, vitamins Kyle takes to get what he needs to get because of his pickyness?
ReplyDeleteHello ! My sons name is also kyle who has severe non verbal autism.. I was wondering about your service dog? PLease tell me about your experience with the public? We are getting our son a dog from the northstar foundation we are loooking forward to it. But I am wondering how Your son delt with the dog when you first brought the dog around and how he does with the animal. PLease
ReplyDeleteHow does shopping at amazon through your blog site benefit you? I have been reading your blog since last week. It is addicting.
ReplyDeleteHi, what do you put on Kyle's IEP since he is "stuck" at 18 months and do you and Autism Mommy monitor if the school actually does anything with this? Or is school kind of a fun place where Kyle hangs out and it gives him something to do?
ReplyDeleteIs Kyle's school in session during the summer? If not, does he attend another day program during the summer break? --Alicia
ReplyDeleteYes he has a 6 week summer school session every summer.?
DeleteMy 1st marriage, I had an adopted son with Duchene's Muscular Dystrophy. He was 1 when I adopted my wife's child. He passed away at 23. My 2nd Marriage I have a 5 year old daughter with Down's Syndrome and non-verbal ASD. I can tell you all that My 5 year old daughter is a piece-o-cake in comparison. The freedom loss for both my wife and myself in my 1st marriage from our son's MD was what put our marriage of 17 years over the edge. My 2nd wife and I have a much stronger relationship and we feel we can weather the storm of this new challenge. No one has ever watched our daughter but us thus far. We work on opposite shifts. Though it's hard, we like it this way. The Autism part of our daughter's Down Syndrome is probably the most challenging, This blog has helped me tremendously in dealing with questions and fears that I have. In conclusion, after reading most posts, I feel one must take Autistic behaviors with a grain of salt, but at the same time improve behaviors where you can for your sake and the child's as he/she/you mature. Enjoy the ride on the way!
ReplyDeleteDoes Kyle drink out of an open cup? Sippy cup? If yes, what kind?
ReplyDeleteusually a mug or a water bottle... he's still pretty darn clumsy with it though so we have to watch him like a hawk...especially in the car...
Delete:)
Who watches Kyle when you get a date night? We don't get date nights because we don't have anyone available and it's put a strain on our 11 year marriage.
ReplyDeletewe have a 19 year old boy who watches kyle when we go out on our date nights. He is the older brother of one of kyle's autism friends....
Deletehe gets it...and we are extremely lucky that he is in our lives...
What question would you like to be asked? :)
ReplyDeleteAre you aware of how helpful and influential your blog and FB persona have become?
ReplyDeleteThanks,
Barrett in Music City USA
i'm aware... that i'm a big fish in a small pond... :)
DeleteDoes Kyle learn anything in school?
ReplyDeleteIm a single mom of a 3 yr he being tested for autism finaly seeing developmental pediactric may 20..i have no fam helping..im tryn to educate self cuz i have no idea wat dealing with..my son jay dnt talk maybe seys hey and ayy..flapping arms when frustrated closed fists shakes wit mean look n grabs me but not hurting me.also very loud with screams always includin tv watching no interating with others jus noticed sometimes walkin on toes..when we leave hm he must hold my hand he smacks hard self in mouth n makes fist n with angry look on face hits self in chin..im scared cuz i dont no my options or what im doing..i stay wit a friend for moment however i want to work bt no way jay can do daycare..i feel im failing as a mom n as a women.i had early intervention wen he was 18 mos he had to score 77 or below for asstance of their services..every catorgory he scored below his lowest was a 53 and highest was 63 at that time..i relocated n why stopped service til got medical again..plz can u guide me on wat to do and wat im up against im clueless lost alone n idk what to do..will he be able to live normal life..go to school etc.. i dnt no hw im gonna work pay bills take care of son..its hard plz direct me n ir opinion will mean alot idk hw bad jay is..i love this boy so much n want to help him become better i dnt no how tho
ReplyDeletehi i run an asd support group and i was wondering if i could use some of your posts please ?? its a closed group so its only parents of kids with asd that would be reading it , thanks
ReplyDeleteHi....was wondering how does one get to send u a private email...I m from India, travel to NYCvery often...my email address is magex123@gmail.com...if u could, do send me ur email address....rest of this convo via my mail to u..
ReplyDeleteThanks a ton...
P.S- wil not take too much of ur online time...just need a quick chat