Sunday, February 10, 2013

Ask Autism Daddy A Question! A simple, "one sentence answer" type question... :-)


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?

:-)

176 comments:

  1. Follow-up to question #4: So are the "four days you love your life" Tuesday through Friday? :)

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    Replies
    1. Ha ha :)

      No I just meant sometimes I love my life, sometimes I don't but the love times outweigh the nonlove

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    2. 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?

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  2. Do you ever find it hard to be friends with a parent of a neuro typical child?

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    1. Not hard but lately we have more fun with other autism parents...

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  3. I have a couple questions
    1. 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?

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    Replies
    1. 1 yes
      2 yes
      3 not ashamed, but we pick and choose our battles of which normal activities to do

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  4. 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?

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    1. I'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. :)

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    2. I love reading all these! You have a fantastic sense of humor!!!

      Kathy

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  5. 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

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    1. Here's some info on DAN doctors.

      http://autism.about.com/od/alternativetreatmens/f/dandoc.htm

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  6. 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!

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  7. When 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?

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    1. Beer for me and Malibu on the rocks for wifey

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  8. Hi 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?

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    1. I 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.

      Glad it seems to be helping you!

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  9. 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!

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    1. yes 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!

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  10. My 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?

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    1. no real screaming or yelling.... just eee-ing and other related sounds... he's been pretty mild mannered the past few months (knocks on wood)

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  11. Have 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.

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    1. 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

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  12. Hoping it will post this time.
    Have you done genetic testing? We have and found out pten is what caused our sons to to autistic.

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    1. 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

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  13. How 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 :)

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    1. That's not a simple yes/no, one sentence type question! ;)

      No 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"?

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    2. I apologize about it not being a one sentence, yes/no question! I forgot about the rules.

      Thank you for the tip though. I think I'll do just that :)

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    3. 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 :)

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  14. Do you ever get so frustrated that you sometimes wonder what your life would be like without King Kyle?

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    Replies
    1. Yes, tough to admit but yes.

      More 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! :)

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  15. repost from facebook
    ok 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

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    Replies
    1. 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 :)

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    2. Kathy 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.

      And no we haven't done RDI with Kyle. Do I lose the speaking engagement because of that? lol :)

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    3. 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! :))

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  16. Ive always wondered what kyle was like as a baby? Looking back were there signs you guys missed as an infant?

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    1. he 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...

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    2. I 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 :)

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  17. How 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

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    1. sara, we've never really gotten rude comments... i wrote a post called "Where Are All These Mean People" about that..

      Maybe 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?

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  18. 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?

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    Replies
    1. We 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.

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    2. I'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!!

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    3. Yes brand does matter. We tried store brand...got a better pharmaceutical grade at the vitamin shop ( :

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    4. We used to use Spray here...I still have it around for when I need to the kids to go to bed :)

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  19. How do you train for races, with working, supporting your wife, the activities Kyle does on Saturdays?

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    1. My 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.

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  20. Do you think (in our lifetime) they will ever find the cause and/or a cure for Autism?

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  21. do you consider yourself a spiritual or religious person? I know most of us can't get through church but often pray....just curious...

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    Replies
    1. No, 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. :)

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  22. Can 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.
    Do 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.

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    Replies
    1. 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.

      Delete
  23. What are your thoughts about a residential autism school like andersen center. Down the road would you ever consider this alternative when you are older?

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    Replies
    1. The 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.

      So we just have to know exactly when we are going to die. :)

      Delete
    2. 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.

      Delete
  24. Repost 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!

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    Replies
    1. yes our house is quite messy... sometimes we invite family over as an excuse to clean...

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  25. How many boxes of Cheerios and bags of popcorn do you go through in a month?

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    Replies
    1. wow great question! i'd say 10+ boxes of cheerios and maybe 10 boxes / 30 bags of popcorn...

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  26. Have you had Kyle tested for Fragile X Syndrome?

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    1. Probably 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.

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  27. When 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.

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    Replies
    1. i just always envisioned introducing my child to all my fav stuff... 80s movies, music, etc...

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  28. Why don't you like to show the king's face??

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    Replies
    1. i just like to keep things private for now...

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  29. What kind of seizures does Kyle get? My asd son used to have complex partial seizures before his surgery.
    what age did he have his first seizure?

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    Replies
    1. his first seizure was just this past may 2012... he ha just turned 9...

      the 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

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  30. I read a post about Kyle and sign language. Is he still doing this and if yes, how is it going?

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    1. not 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...

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  31. Does 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

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    Replies
    1. not a specific one... but the wife mixes up an awesome honey mustard concoction that he likes on his chicken these days... :)

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  32. hello, 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?

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    Replies
    1. Hi 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.

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    2. sorry to hear about your struggles anon... :-(

      where 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?

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    3. 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.

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    4. we 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.

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    5. dear anon, we hear all the time 'you get what you can handle' but i must admit sometimes I think to myself, what choice do we have, or what if I cant. This is why I love this blog. cause in some way we all support each other.

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  33. Is Kyle stubborn with certain things?

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    1. he'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...

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    2. Yes, 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. :(

      Delete
  34. Does Kyle take showers or baths?

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  35. You 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?

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  36. What kind of supplements, vitamins Kyle takes to get what he needs to get because of his pickyness?

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  37. Hello ! 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

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  38. How does shopping at amazon through your blog site benefit you? I have been reading your blog since last week. It is addicting.

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  39. Hi, 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?

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  40. Is Kyle's school in session during the summer? If not, does he attend another day program during the summer break? --Alicia

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    1. Yes he has a 6 week summer school session every summer.?

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  41. My 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!

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  42. Does Kyle drink out of an open cup? Sippy cup? If yes, what kind?

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    1. usually 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...

      :)

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  43. 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.

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    Replies
    1. we 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....

      he gets it...and we are extremely lucky that he is in our lives...

      Delete
  44. What question would you like to be asked? :)

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  45. Barrett Chaudoin Nashville, TNApril 6, 2013 at 8:07 PM

    Are you aware of how helpful and influential your blog and FB persona have become?
    Thanks,
    Barrett in Music City USA

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    Replies
    1. i'm aware... that i'm a big fish in a small pond... :)

      Delete
  46. Does Kyle learn anything in school?

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  47. Im 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

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    Replies
    1. Just an anonymous reader with a possible answer. CALL YOUR LOCAL COUNTY SCHOOL DISTRICT!!! GET HIM EVALUATED BY THEIR SPECIAL NEEDS STAFF. The community wants your son to be able to sit in a classroom by the time he gets into Kindergarten so they will provide you with free (taxpayers pay them) services to improve his journey through school. CALL NOW. Don't hesitate.

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  48. hi 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

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  49. Hi....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..
    Thanks a ton...
    P.S- wil not take too much of ur online time...just need a quick chat

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  50. Thanks for all the great info! Really helps!Does he ride in the cart at store or only after seizure? This is a great idea but always have 2 people with. What does your wife do when he throws a shit fit (meltdown) and she is alone with him in public like a park? When your son wakes up at 3:00 am for example is he expected to have a normal day with all activites on GO? Or is he allowed/encouraged to take it easy when he wakes at some crazy hour?

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  51. Hi,

    Thanks for you blog posts with a window into your life. It is something families with Autism go thru. My son is 2 and has same issues and has we are getting used to it emotionally. I wanted to ask you

    as a father how do you take break from daily routine?
    how do you travel or go out with Kyle?
    where do you see Kyle at 25 years of age?

    Please share anything else that you would like a new parent to know.

    Thank you for your blogs.

    Desi

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  52. Hello! I am an Autism Support teacher and I had a question for you: Have you had any negative interactions with professionals during the IEP process? Have you ever felt like your opinions did not matter to those at the meeting? I ask because I am researching trends of families caring for a child with Autism and have found this to be a trend.

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  53. Hi my name is Amy, I have a seven yr old daughter who has autism and the dentist is a adventure every time we go but now they have given me these options between sedation and psychically restraining her.. I was curious as to how you and your wife approach the dentist for your son..

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  54. My son is almost 13...do you have any issues getting him to brush his teeth, wash his hair, shower...basic hygiene tasks? My son will totally melt down or find convenient ways to make me think he did them (gotta love PDD kids). Do you have any quick tips or tricks that worked for you?

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  55. Do you & your wife poop infront of eachother?

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  56. Here is a Buzzfeed posting about things you shouldn't say to autism parents. I thought you might want to share it: http://www.buzzfeed.com/aspiesinthehouse/5-things-you-shouldnt-say-to-an-autism-parent-d6i1

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  57. Please HELP my 9 yr old daughter has out grown her pull ups!! And the adult one are too big!! They don't make x-small adult. And there is no potty training in sight!!!We have tried all ways!!!

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    Replies
    1. Here's link you may want to check out. http://www.diaperbank.org/news-resources-facts/diaper-sizes/. There are cloth diapers out there but I know they are probably a hassle, too.

      Delete
  58. I saw a comment on how DR.EKPEN TEMPLE help some lady. Everyone need to know of this great spell caster that brought my boyfriend back to me within 48 hours he took away all my years of sadness in just 48 hours i am living with my boyfriend now in peace and he treats me with so much respect. you can reach this great man on his email: ekpentemple@gmail.com

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  59. You are great ad!

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  60. Hi Great Blog... I have a 12yr severe autistic son, non verbal, etc. We went through the same training as you for the potty training. Our son is about 90% trained during the day but at night.. forget it. Is your son potty trained through the night? and if so, any tips?

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  61. Have you ever thought about giving your son marijuana for either autistic episodes or seizures?

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  62. Any places (aside from your fabulous blog that is as real as it comes!) you would recommend someone get advice on ASD that makes sense?? I feel like the ones I have read take more of a medical approach, but I'm looking for one thats easier to get through (like this blog!!!) that can help me learn more about the battle I'm up against here. Any books/movies/websites you'd recommend for an ASD newbie?!?

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    Replies
    1. Oh yeah, and side note, my 3 year old was just diagnosed... I can't wait to see where he takes us, aside from outside.... always sneaking outside!!

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  63. No questions right now, just a very big THANK YOU.

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  64. I'm an educator and researcher and my specific area is Autism & iPads or technology.....if you had one thing you would want us (educators/researchers) to focus on, what would it be?

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  65. Hi,

    I sent you this message on your Facebook page but I don't know if you check your messages there... Here it is again just in case...

    I have a 9 years old that also suffers from autism and seizures. Did you guys tried CBD oil? Just sharing a thought... Below, a few links about it. Have a blessed New Year of 2014 with many blessings.

    http://realmofcaringfoundation.org/

    http://www.amarimed.com/

    Raquel.


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  66. Hello, I've read your blogs and the "FAQ" before asking any questions and hadn't seen this one anywhere (sorry if I just missed it and I am repeating! hehe..). However, I work in a group home with a mixture of intellectual disabilities and mental illnesses and one of my residents has severe Autism, as well as one of my nephews has mild Autism and I do agree, the differences between the two are almost incomparable although some similarities of course. I was just wondering since you said "turn off the light" while he was standing in the middle of the room, he was confused as to what you were asking of him, of course this would cause frustration. I was wondering if you've posted pictures of actions around your house, that maybe you can try pointing to the action and see if he would respond, either going up to that picture board to look at it with you, or if he'd understand you are asking him to go to the light and turn it off/on. I'm just wondering since sometimes actions/pictures are much louder than words. I've also worked with and came in contact with many other situations (not always with autism) where verbal communication was not an option, and I found pictures whether they were already on hand or I had to draw them out myself were always quite helpful. You wouldn't believe even being in a room with someone who suffered a major stroke and lost not only their ability to talk but some other brain functions as well, they could forget some of the simplest tasks we take for granted. These have helped me here as well. Anywho before I go on blabbing like I seem to be doing very well at! I will let you respond and once again I am sorry if this is something you've tried. But I to know the frustration-love relationship that it can be, as loving and wonderful as it is, I can't wrap my brain around it either.

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  67. ok does any of the meds mess up kyle teeth do they break or cheep for no reason ?

    my son is adhd & austic and has seziors i think the meds they have my son on i think it mess up his teeth .... does urs???

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  68. No question, just want to tell you I appreciate this blog. I teach and will rcommend you to some ofmy parents. I am campaigning for you to win the online contest.... good luck.

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  69. Hi AD, I know you said Kyle is nonverbal, but does he say any words at all, even if it's just repeating them? I have two daughters on the spectrum, but only one is nonverbal. She can't communicate, but she can repeat words when asked. I guess I am just trying to see if I am still to describe her as nonverbal, or is the fact that she can repeat words when asked, makes her verbal.

    Also, My almost 7 year old has two stims that I wish I could find a way to get rid of. One is chewing on everything and sticking the little pieces she breaks off in her nose. The other is taking any drink and swishing it in her mouth and spitting it on furniture, the floor, tv's, etc. I guess my question would be, did your son have any really bad stims that you were able to get him to stop? If so, do you have any advice for me on how to stop my daughter from doing these things?

    Thank you so much AD!!!!

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  70. I love your page. I teach special education and have students with autism in my class. They are always my favorites.

    My 19 year old son has Asperger syndrome. It's an ASD, but because he is high functioning it's hard to find resources and services for him. He has finally gotten a driver's license, but due to his social awkwardness, etc. he is still unemployable. He graduated from high school with a diploma last year. I will not allow him to lay around the house, so he is volunteering for a local horse rescue a few hours a week.

    Do you know of any resources, or contacts, for high functioning ASDs? I don't know where else to turn.
    Thank you... for everything.

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  71. I was diagnosed with autism a year after my son was diagnosed. My daughter had everything for an autism diagnosis, but they said they wanted to leave it open for further assessments and not give a diagnosis. Are you or your wife on the autism spectrum? My wife just thought I was a typical guy with quirks. Getting the diagnosis did not make things better for us.

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  72. What music does Kyle like?

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  73. Does Kyle wear pull-up's and if he does are they furnished by medicaid?

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  74. HI! I'm the father of 10 year old triplet boys, one of whom has severe autism. I have been trying to get re-imbursement for diapers for him and really am struggling on how to do that. Any suggestions on how I can get insurance to pay for that?

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    Replies
    1. Hey there. My ASD son was in diapers until he was 6 and the only way I could get insurance to cover his diapers was to have our doctor diagnose him with incontinence and write prescriptions for the diapers through a pharmacy or medical supply company. Good luck and I hope this helps. :)

      Rachael

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  75. Do you ever feel like your son doesn't love you? It feels that way when my son claws my face or bites me so hard that what ever body part it is doesn't work for hours. Boy is this a loaded question.

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  76. QUESTION:
    Will you kindly *PLEASE* change the background color on your blog? I know I'm not the only one that has asked this. I can only get about a paragraph down before a major headache sets in...light text on dark background doesn't usually work in any sort of online format unless it's very short pieces of information. (I even said, "please.")
    Thanks!

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  77. Hi... I have never posted on any blog before. I was wondering did you ever give Kyle candex or candidase? Also I think I read that you had him on digestive enzymes before . Do you remember what brand?

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  78. I was wondering if a child "flaps" their hands a lot through out the day if it could do any long term damage to the child's wrists in the future

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  79. I don't have a question, I just thought you should know that sometimes your ranting makes me feel like I am not the only one. I don't have a child with Autism. But we are trying to determine what is going on with him. I read your posts/facebook, not for answers, but maybe to comfort myself knowing other families are going through the sames steps. Some days it is exhausting. Other days.... my heart swoons with love and joy. Keep blogging!

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  80. My moderately autistic daughter likes to tease her therapists by purposefully giving them the wrong response. The way they can tell she is teasing them because she will start to give the wrong answer and then give smirk at the therapist. Does Kyle have a sense of humor?

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  81. Do you feel that being around your autistic son makes you feel more autistic-y? Ie: The more I'm around my ASD children, the more I feel socially inept and sensory overloaded.

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  82. What insight do you have regarding my husband's resistance to getting our service dog (it is coming soon) or handicapped parking? My son bolts and loudly stims so we are hardly below the radar in public. Husband can't answer beyond he doesn't want it. He's a military/paramilitary type and I don't want to undermine his wishes, but I sure would like to better understand where he's coming from.

    What I've thought of so far: denying the severity of disability of the child, too overwhelmed to decide on anything especially change (lack of control), seeing this type of assistance as a sign of weakness, pride interfering with asking for help in general (not wanting to be a burden), not wanting to attract attention, or misconception that they are for the blind and paraplegic i.e. "real" disabilities only?

    While you can't answer for all men, what feelings did/do you have or have heard men having about getting a service dog, handicapped sticker (or asking for scheduling leniency at work when something inevitably comes up)?

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  83. Did your son ever take Miralax for constipation?

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  84. Work in progress autism parent: New to the site, love it! Appreciate your candor. Fact is , my son is what I call middle of the road autism (not high and not low) but has all the traits you mentioned, the quirks, tantrums,social issues etc. he is 18. he still has toileting issues (he holds his stool till the pain is unbearable
    an wiping is still an issue) My thought is this, each thing my kid accomplishes is a BIG thing, no matter how small it really is. Greatest issue now is showering. he knows the steps, he likes the water, he doesn't like to wash and barely brush his teeth, all sensory issues. I have found to use the thing they care about the most to help teach them. For example, my son cannot do math without counting on his fingers but when I pretended to be the witch from Wizard of Oz(his favorite show then) he counted without his fingers....amazing. I've heard other parent zone in on the child's interest to get them to learn something. Hope this helps. Baffled on showering, anyone got any ideas?

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  85. You asked for comments about the 2 year old running out to the pool to look for his mom. To me that seems a little dangerous too. I wouldn't want a typical child doing that either. My son wouldn't do it simply because he doesn't like to go anywhere with out me. He will go places with his dad but is much happier if I go along. He is verbal and sometimes it is easier but the OCD behaviors can really drive you nuts. He has to ask everything twice at least (so it will be even) and will sometimes ask a question 6 (This is a limit that we have set) times and expect an answer each time. So fight the good fight. You are doing a fabulous job. I'm in awe. Wished I felt 24 all the time.

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  86. Hey Autism Daddy,

    How does Kyle do with haircuts? If it's bad, have you found a solution? I think the day is fast approaching when Luke will no longer be restrained.

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  87. Does Kyle have any aggressive behavioral issues? Our boy sounds just like him - he is almost 8 now. The biggest difference is that we have to share custody with his biological mother (who refuses to admit that she can't handle it alone and sabatoges our progress out of immature fits of jealousy). Our boy, he has major behavioral problems at his mother's home and at school. He doesn't have them at our place. How do you handle discipline, if you don't mind me asking? We don't agree that disabled children shouldn't be disciplined - that is (in our opinions) how you end up one of the parents covered in bruises and cuts once the child hits puberty.

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  88. What kind of epilepsy ? My oldest has l.g.s which caused regression. My youngest is also on the spectrum on the mild side

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  89. Actually I think the free meal and post-it note is a big deal. Happens so rarely and should be shared with the world. Hugs, from Mom of a 19y/o man w severe autism.

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  90. How does Kyle deal with clothing? I often find mine in the nude. I joked the other day that we should go on a naturist holiday, much to my shock he loves the idea and wants to go!

    Now I have to decide whether it is wise to go or not, me and my big mouth when will I learn?

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  91. I develop and implement feeding programs for kids on the spectrum. Has Kyle ever had such a program?

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  92. What do you think about the Stapelton case?

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  93. heres what happened to us the other night my daughter Emily is in a group home here in Brooklyn lately her thing is not wanting to come home with us. I invited my sons girlfriend here for dinner and I wanted Emily here so I had my husband pick her up at her group home she said she wanted to go which thrilled him then as soon as she got off the bus it was no no no as soon as she got to our apt she went to the bathroom took off her clothes and went to into the bathtub and would not come out she also defficated in her pants and spread it everywhere She would not get out of the tub till I told her she could go back to program. I got into a car service with her took her back > Went back home apologized profusely His girlfriend has a special ed sister and cousin so she understands but I was still upset would you've taken her back Do you think we should've forced her to stay. How would you guys have handled it

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  94. SleeplessInSeattleOctober 3, 2014 at 9:35 PM

    Hi there. I'll keep this short. I have a non-verbal almost 6 year old with severe ADHD to spice things up. He's started digging his nails in to people and scratching when over excited or not getting his way (hooray for a typical reaction!). Had this with your boy and any strategies? We have a BCBA and an army of therapists but wanted a parents opinion, one that knows and understands non-verbal... :-) Oh and we're trialing meds. We're off the stimulants and on to Amantadine which is helping with the extreme highs and lows. Ok, not as short and sweet as I had planned...

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  95. Good job on your blog! Well done. We're working on software that creates interactive cartoon characters (also called avatars) and will make it available, along with training, to SLP therapists who can use it in their sessions. What do you think of the idea of getting this technology to parents, so it could be used in the home, as a kind of digital puppet show, running on a game console? There's been some research showing effectiveness and improvements with virtual reality and these avatars, but it hasn't been available outside of university research settings. Would this be perceived as still more "snake oil," or embraced, in your opinion?

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  96. Hello Autism Daddy. I have an 8 year son with autism (non-verbal) and it is very hard to deal with. I have been dealing with it for 5 years now since he was diagnosed and it has cause a strain on my marriage and family life. I have another son who doesn't get the attention he needs due to my autistic son. I am on the verge of leaving my wife but I know that is the cowards way out. I am simply frustrated to the max because I don't see a light at the end of this tunnel anywhere. If you have any personal advice I would greatly accept it.

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  97. Hi there. I have a problem that I need some help and advice with, My son Kane is 11 years old and has been struggling both socially and mentally since the age of 2. Kane is a social recluse and as he is getting older, his symptoms are getting more severe depression, anxiety and so on. To the outside world he may seem ok. He is polite to others and tries to interact with others but the methods on how he does this and the way he interacts is different to what can only be described as what normal/mainstream kids do. Kane is also approximately 2 years behind academically and also suffers from dyslexic attributes such as d and b’s back to front and writing the number 7 the wrong way round.
    At the moment Kane is registered to be in mainstream education at the local secondary school (year 7) but despite highlighting warnings prior to him starting school with the local GP practice and specialist doctor CAHMS Kane has now started with panic attacks brought on by severe anxiety to the extent he will hurt himself, make himself sick and cry and rage with unbelievable strong emotions. As a result of this, as parents I (DAD) and his mother have decided to keep Kane at home and not send him to school and look at the various options of Kane attending a more specialist school.
    HOWEVER.......
    THIS IS WHERE IT GETS DIFFICULT and COMPLICATED 
    According to his secondary school although there are academic problems there are no severe issues as Kane appears to socially interact satisfactorily with others of his age, he also tries to work to a reasonable level in school.
    SO I AM NOW STUCK BETWEEN A ROCK and a HARD PLACE 
    As the school are of the opinion that Kane is ok the local GP Practice has supported the opinion of the school therefore to get an official diagnosis for Kane and a Statement of Special Needs Education to get the necessary support for Kane is practically impossible. The school have also highlighted the fact that it is a parent’s legal and moral responsibility for a child to attend education on a daily basis. However I am of the opinion that the school is not medically qualified to assess Kane on a psychological basis and it is impractical for a medical institution to support the school opinion when infact it should be the other way round. There are now various meetings lined up with an Educational Psychologist, the local school and GP surgery to discuss all of the above. I feel so strongly about this issue that I have also contacted the local MP and the Head of Education at Derbyshire County Council (still waiting for response) and will also have legal support from a local solicitor regarding any potential future legal issues (with the support of legal aid).
    As an interim measure I have applied for Kane to change schools to another mainstream school where I hope he will get better support and also working on the medical factor to get an official stamp on his condition.
    IS THERE ANY OTHER PARENTS OUT THERE THAT HAVE GONE THROUGH SOMETHING SIMILAR OR JUST TO GIVE ANY ADVICE WHICH MAYBE OF HELP.
    I try to be the best, strongest and supportive Dad I can be but with the problems, knock backs and continuous difficulties. The wind for sure has been knocked out of my sails .

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    Replies
    1. yes, yes and yes. My daughter is 10 and may be on the autism spectrum (undiagnosed). We know for sure she has ADHD, and SPD. She is also 2 years behind. We were told she is too social to be autistic. but what about the other 8 red flags on the list. Sensory problems are her biggest challenges. Clothing is a huge issue, and she wears the same clothes day in day out. Not good now that she is almost 11. I home school her and yes she is medicated for anxiety. After the last half a year of mainstream school (grade 5); her stress levels were so high she started pulling her hair out and banging her head. Quite debiltated. Homeschooling has removed 90% of the daily stress. Now, she is only given work she can be successful at; some is grade level and some isnt. She doesnt see herself as a failure anymore. Also manuvering through strange unpredictable social situations is virtually gone. She socializes fine in the real world, with mixed aged groups and in public settings. Only when you get 25 ten year olds together does she have a problem. She is actually a fairly typical kid these days after the removal of the stressers. Stress causes strange behaviours and I'm convinced most 'professionals' involved in the school system view everything as a behaviour problem. She was allowed to sit on the gym bench crying ALL DAY because she had trouble with her gym shoes. If a ten year old could wear them, she would, it was not behaviour but a sensory problem, no child wants to be embarassed like that. How is that Supportive? A lot of passive aggressivness. Truth is, they dont get it. If you can, Home school and put him in things that are fun for him. Try exposure therapy to boost his confidence and love, laugh, relish in his talents, and he will thrive!! Dont get hung up on the public school system; if a child has that much stress they are not learning anything anyway. If you cant homeschool, push for the label and get him into a school where he is safe. He needs to feel safe, secure and supported before he can heal. hope this helps. Welove them so much.....it brings us to our knees when we feel helpless.

      Delete
  98. Some people would love to have to argue that there kid needs an iep and is not normal because others think he is.i mean socially thays what matters most.

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  99. Autism is the new ADHD. ....most have just a social communication disorder that u can overcome. So if jerry thinks he has it that isnt his fault since the new "awareness" is incorrect and over rated. Autism should be referred to those severe.

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  100. God bless us all and prayer is key regardless.

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  101. What if there were scientifically formulated nutrition that could make such a difference in your son's life - a nutrition that has brought seizures n some children down to a minimum, that has enabled non-verbal children to speak, developmentally delayed children to catch up to their peers and then some, that has melted oppositional defiant and other emotional disorders, and eased life for kids with genetic disorders, even extending them? If it had a good company reputation, formulas created for kids, and a money-back guarantee, would you be willing to give it a try? from Brenda Kreher on facebook

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  102. Hi there I hurt happened upon your blog. I heard that your sob has autism and epilepsy. Has he even been tested for Creatine Transporter Deficiency? It causes autism, developmental disability and epilepsy in males.....

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  103. Have you considered artificial sweeteners might have something to do with seizures? When nutrasweet came out there was a warning it could cause seizures in epileptics and young children? A lot of products contain artificial sweeteners and nothing is on the label. You have to know all the chemical names and read every label.

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  104. Do you have any opinions on what might have contributed to your childs autism. Are you aware of any common factors that autistic children share?
    Examples, flu shots during pregnancy, common vacinations among other children with autism.

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  105. I applied for parking disability permit it got sent back because dr didn't write enough info. Can you please help me out what the dr should write that application should be accepted

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  106. Before I even start let me just say thank you for being transparent about your life and your son. I have looked and in many places the "real" life of autism is sugarcoated. So let me just jump right in. I have a seven year old son who is not autistic but I recently (5 months ago) met a wonderful man that has a set of twins which his boy is autistic. They just turned 3 last month. I am very new to the autism world and I am super overwhelmed. In the beginning like any dating couple things just drifted by and since we only saw one another on the weekends I don't think I was seeing the truth about autism. Long story short my boyfriends life took a wicked twist and he found himself rock bottom. As his girlfriend I have done what I could to help and I am super happy to say that he is back on his feet but what happened was that I went from being weekends to all the time and with time I learned the truth about autism and how severe it can be. I say his son is severe but he says he isn't. He is non-verbal and has just learned to walk. He also hits himself during tantrums and meltdowns. He has intestinal problems which he takes meds for to help him with that. After about two months of being in the forefront I am exhausted and I am going to be completely honest scared to death of autism. I feel like the relationship has withered because of the overwhelming situation. I find myself with the obvious question and that is "Is this what I want for the rest of my life and for my son." I know is sounds like I am a heartless woman but I am not. I promise you I want nothing but the best for them and I have and continue to help in whatever way I can possibly help. But I am the first to say I don't know how to handle it. It is hard for parents who birth their kids and have autism and I would say it is harder for someone who didn't birth them and is trying to bond with them. My fear is that it won't get easier. That he won't potty train. That I will have to restrain him at 21 and that he will never be able to be independent. I am looking for truthful answers. No sugar coated answers. It is such a huge thing to step up to as a "girlfriend" and not the mother of the kids which by the way is not in the picture so it is only dad raising these kids and this special boy. I can only imagine how hard it is and my five months is only a taste. But what I want to know is would I have to give up my career to give him the attention he needs? Is there a husband and wife relationship or is it pretty much about just making it through the day? How could this potentially effect my son? I am at the point where I either go all in or step aside and just be a friend and support system. Being that your son is severe I would hope you could be bluntly honest with me about what the kind of life I am looking at if I decide this is what I want forever.

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  107. Sorry if I missed this one among the many others, but can you tell me more about your answer to 7, and it gets easier, then harder, then easier?

    For reference, my son is 3-1/2 and is somewhat verbal and is getting Son Rise, supplements, no-processed diet, PT, OT and horse therapy. He is affectionate (I feel soooo lucky) and is in his own world about 50% (some days 30, others 80) .

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  108. There is a documentary coming out that interviews parents of children with autism. The goal of the documentary is to change the perceptions of autism and to give insight into the lives of families with autistic individuals. I have been blogging about the documentary and i encourage you to explore it in more detail. Thank you for your honesty.
    http://autisminamerica.cnvolved.org/2015/02/25/documentary-changing-the-face-of-autism-premiers-at-carson-newman-university/

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  109. I hope your son gets to read your blog one day, and that he disowns you. Many of us on the spectrum have had hellish childhoods, not because of our autism or Aspergers, but because of bullying and abuse, much of it at the hands of parents who couldn't accept us the way we were, or who wanted to use it to garner sympathy for themselves.

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  110. Thank you for your blog. I have not yet read one that I disagree with, and even if I did it wouldn't matter. You have helped me tremendously.
    Can you fix your link to Amazon? I'd like to support you - you've helped and are helping me, so I'd like to return the favor.

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  111. Can you fix your link to Amazon? You've helped me so much, I'd like to return the favor as much as I can. Thanks

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  112. How do I explain to my husband who is 62 that our 13 yr old Aspie son is just trying to express his dislike of school in his own way (which looks similar to the 3 year old in the pool)?

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  113. Do you ever worry about how big The King will be by age 18? my son who is really severe is 6'3 and 260 pounds, I'm 5 foot and 109

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  114. Hey, Autism Daddy! Did you hear about this big thing going on over at Guiding Eyes? isn't that where the King got his Service dog!? They want or DID shut down the program! Isn't there anything we can do?

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  115. Hello! Do you ever deal with abuse from the King? My daughter is short to anger and will have "fits" of throwing things at us and cuss us out. I sometimes feel like a prisoner in my own house, and my other kids do too. And I'm powerless. Nothing works (so far, and it's been years). We are getting therapy (individual and family) and yes she's on meds. I also am at a loss for consequences for her- it's all a punishment for ME if I take away the iPod etc. Thanks, Tikva

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  116. Just want to say a big THANK YOU! I've been having one of "those days" dealing with my 5 year old and stumbled upon your site while looking into disabled parking info. You have made me smile and see the brighter side of things and I'm sure that you do that for many people all over the globe! (I've clicked on your Amazon links and will continue to do so going forward as I am terribly addicted to what my husband refers to as "AMAZON HELL" LOL. Wishing you and your loved ones well. Tima

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  117. I have an autistic grandson, eight years old now. I would like to assist my son and daughter in law with sid, but don't know what I can do for them. What kind of assistance from friends or relatives have you found of most use or benefit in raising your son?

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  118. Hi,
    I was just wondering if you have come across any more research on the possible connections between autism and Parkinson’s? My hubby’s mother has Parkinson’s. My hubby is undiagnosed Asperger’s. Two of our sons have been diagnosed with ASD (the other 2 have sensory issues).

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