I got all the usual comments. Some people thanking me as always "for telling it like it is"... some people telling me not "to give up" so easily...some people telling me to try Son Rise or Playtime or ABA... some people telling me to change his diet.
And I am fine with all of that. I don't always agree with all your comments and I'm not always posting asking for your advice :-) lol...but I accept them all.
Most of your comments I love and they inspire me and make me want to keep doing what I'm doing. Sometimes your comments make me think ("things that make you go hmmm"). Sometimes your comments bother me or annoy me or make me feel even sadder or more depressed... but I'm a big boy and I can take it. I chalk it all up to I'm putting myself out there to the autism community and your feedback, good or bad is what comes with the territory.
But I got one comment that really stuck with me. It didn't bother me or annoy me, but it stuck with me and I feel like I still need to talk about it.
Here's part of the note...
hi - was thinking more about your post. totally get it, because I'm there. its so hard to just find the time. But I also have another part of me that says "suck it up, buttercup" because my 8yo non-verbal is just starting to verbalize now after excruciating effort and NO social life. if I'd have given up, or taken the "oh well he needs a break" approach (and believe me I would have LOVED to take a break) he wouldn't have got there.
I wouldn't tell 14000+ people you don't think your son is any Carly Fleischman, because what if he is? she didn't even start typing until 16. whether you're ready for it or not, meant to or not, want to or not - you influence a LOT of people now. ...
I do think you have an incredible opportunity to help, too. don't waste that. you are a good man, I can tell. you have a good wife. you have a good life. there are people fighting wars in bad places who have to leave their autie at home with only one parent or no parent. there are people who cant afford help, don't have an education / have other problems. don't worry about what you achieve, but instead of letting him zone on the tube... hold him. ...
you're a Dad. lead the way. every minute is an opportunity, and I know the way this world is set up doesn't make it easy for us autie parents to do everything so you need to prioritize. nothing less than the future depends on it.
Now there's nothing in there that I haven't heard before... except the fact that I shouldn't write something that's on my mind because I have 14,000 followers and I influence a lot of people. That's new to me. But I've got to state this loud and clear.
I AM NOT A ROLE MODEL. I AM NOT A HERO. I AM NOT AN "AUTISM WARRIOR".
I didn't start my FB page and blog to be some autism parent role model or some autism parent superhero. I started this all because I needed a place to vent... a place to write down my thoughts, frustrations, our challenges...and once in a while our little victories. A long time ago I wrote this on the "About Me" section of the page and blog...
This page will be 75% comically ranting & complaining & telling it like it is and 25% inspirational & warm & cuddly & feel good stories...Ok, maybe more like 80 / 20... :-) All people are welcome on this page regardless of their backgrounds or beliefs. And you are welcome here if your kid is low functioning, high functioning, aspergers, etc. But always remember the place where I am coming from. Severe, low functioning, non-verbal autism. Just remember this. I have a 9 year old son whose receptive & expressive language are at an 18 month old level and they have been for years. So that's the autism that I am writing about.
The mission of my page has become to talk about and try to laugh about all the unpleasantries of this crazy world of autism. I couldn't really find a FB Page or blog that wasn't all sunshine and rainbows. I couldn't find a place where people actually bitched and complained about autism.
So, this is a place to tell it like it is, not to sugar coat things... We talk about poop on here ALOT, and complain about our kids crazy stims and bizarre sleep schedules. If you don't like people laughing about poop and shouting hallelujah when their kids FINALLY fall asleep, then this might not be the page for you.
Also, please remember that this is my page and on it I'm sharing my story of my life with my wife and my only child, a boy named Kyle with severe autism. Sometimes you may not agree with everything I write about, and that's ok, but just remember that I'm posting as a 42 year old dad, not some sort of autism expert.
And I stick by that. You may not agree with everything I post and you can tell me I'm wrong about whatever. I can take it.
But please know that I will not let the fact that I have 14,000 followers affect what I write about. I enjoy writing what's on my mind...or showing you what's going on in my home... and my FAVORITE comments are when I get the feedback that says things like "it's so good to hear somebody saying what I feel." That fuels me...
And as for the fact that there's other autism parents out there that have it harder than me and that I should just "suck it up" again I'll say this...
Again this is what's going on in my brain... and I can't help the way my brain works...
But I will say that the same way that you can say when you've met one kid with autism then you've met one kid with autism... you can say the same thing about autism parents...
I wrote this a while back in another blog post (read), but it fits in here nicely...
I said in another post (read) that I don't buy into that "God only gives you what you can handle crap" but maybe I buy into it a little because we readily admit that we couldn't handle any more. I've written before (read) that we decided to not have more kids after Kyle because we were fearful for more asd kids and were afraid that we couldn't handle it. So yes, many of you have multiple kids and some have multiple asd kids and you hear old Autism Daddy bitching and complaining and you're thinking WTF?, what's he complaining about? I've got it 5 times harder... To you folks I tip my cap and say, you win... you're obviously stronger than me... having one kid like Kyle is about all I can handle...so I'm weak and you're strong... I've only got 1 kid with asd and I'm on antidepressants...
So there you go. I am not an autism role model. I am not an autism super hero. I am not an autism warrior dad. With only one asd kid I have all that I can handle right now... and the wife and I are doing what we think is right for our son and for our survival. You may not agree with it. You may not think we are doing enough... but this is my journey and y'all are reading what's going on in my brain. And I won't change that.
If you're looking for a role model or an inspirational autism page/blog you may be in the wrong place.
Now, if amazing, inspirational things happen with my son of course I will write about them. And if shitty things happen I will also write about them.
On this page/blog I will vent when my kid wets the bed. I will tell you about his seizures and how freaked out it makes us. I will get excited when we get a sitter and get a few hours of respite. And I will celebrate the little things like when my kid eats a pb&j sandwich for the first time in 2 years.
That's about as inspirational as things are gonna get around here for now...hope you're all ok with that.
THAT'S ALL I GOT...
THE END...
PS. Please don't attack the person that sent me this note. She said nothing wrong and I hold no ill will towards her. I just read her note, and she made me think. Her note was one of those things that made me go hmmm...
:-)
Thanks for staying true to who you are. We need more of that and less judgement in the autism world.
ReplyDeleteWow totally get the whole reason why you and your wife decided not to have any more children I have 3 children aged 5yrs 2yrs and 1yr we were told by the educational psychologist she thought our eldest had an asd when I was 7 months pregnant. With our youngest I have 3 boys I am now constantly worried about my younger 2 and always watching for signs. If we had found out sooner about my eldest I really don't know if I would have had more children. I enjoy reading your blogs AD as I can really relate toalot of what you say it's honest with no sugar coating keep it up much love and respect to you for telling it how it is x x
ReplyDeleteMy philosophy on blogs is "your blog, your stuff" No one is forcing anyone to read it or follow it. When I write my Laughter, Could be the Missing Piece blog, I am not thinking about who is going to read it and tailor it to their particular needs. I write what catches my fancy. Stuff happens, stuff gets written, stuff gets said and may be taken the wrong way and I can't do a lick about it. So blog on and allow your 14000+ followers take what they will from your thoughts.
ReplyDeleteYou're a lot like me, I love my son, but I'm pretty certain Autism isn't a gift from God and heck yea I would change it if I could. I don't want to change my son for the sake of it, I would be stoked if he didn't have to struggle with things we take for granted. As you say, play the hand you've been dealt, all we can do, its not easy...but I hope any other Dad who hoped to take his son to baseball games or shoot hoops in the backyard doesn't leave, don't leave....thats all I can say...your kid didn't ask to me born, man up and live what you made, as hard as it is
ReplyDeleteAnyone who uses the phrase "suck it up, buttercup" already thinks they are better than you. Pay no mind. I adore you because you are a good person who doesn't think he's better than anyone else.
ReplyDeleteThis is why I LOVE your blog. You speak honestly. You clearly adore your son. I happen to agree with your philosophy too. You are a role model of sorts...accepting your life as it is and living the best that you can. Keep it up!
ReplyDeletei here you yor not a role modlke i get tired of feeling like the poster child for autism sometimes .when people think we are all the same or they just are not getting it.one thing i would say is dont give up on your child yet .if my parents liosten to the so called experts when i was younger i would not be were i am today .they had to deal with some thinking i was mr when im not other telling them i end up in a group home an work shop an so on baslicy if one therhy wasnt working they try someyhing else an my mom work with me at home on top of what i was getting from school an therhy .you cant justy let the teacher do stuff anb not follow throw at home i like carly was somewhgat written off people thought i was so in my on world they talk about me like i wasnt there .it was very upsetting an mad nme so angry at times that i would act out an get spoken to about my behavior .never assume ypour child dosnt understand .not being able to speak isnt the same as not having something top say .it was all in my head just coulkdnt get it out for long time .whsat language i had didnt allways make sence was echgloic or say stuff didnt makke sence lor repeat what i heard deff wasnt convertional .i had alot of privet therhy to .guss it all click on year an i became a hf person but like carly it been a long hard road .never give up on child
ReplyDeleteAmen! That's why my blog says...not the Aspergers Mom with All the Answers...just looking for them.
ReplyDeleteI agree with being fearful and not choosing to have more children. My two year old daughter was diagnosed last year with both autism and type 1 diabetes and i am definitely afraid to have another. Your blog is something i just enjoy reading and have gotten some ideas like the iPad post the other day (thank you), but I would never let it influence what i feel is best for my child. Hopefully most other parents that read this or any autism blog do the same. Only we know what is best for our own children and families.
ReplyDeleteI always read your posts for the sheer honesty in them. My son just turned eighteen. He was diagnosed at four. He showed a lot of promise initially, learnt to speak, take care of his bodily functions, went to school, etc etc. In fact he did so well, with me pushing him for about eight hours a day with structured activities, that we almost thought we would give Autism the slip. Then, Bang! His seizures started. With each seizure he lost skills which we took several months/years to teach. Initially I prayed he would go to college. Now I just pray, he doesn't get the next seizure. This despite being on four medications which make him a lanky lad with tremors and pathetic small muscle power. Oh! I am a medical doctor, and I am tired of being encouraging to other autistic parents, and I am tired of trying to be strong for too long. Yeah, it comforts me no end to just read about your experience with your little guy. Say it as it is. No sugar coating needed.
ReplyDeleteI love how you write your blog. It's so similar to our life with our 6 year old severe, classic, non-verbal son that it's comforting to know we're not alone.
ReplyDeleteI totally get your decision to not push therapy stuff at home. We tried making everything a learning/therapy opportunity for years with Brandon, but it just caused all of us to get overwhelmed. Since we've decided to let him do therapy at school and let him be a kid at home. He's less stressed and able to focus more at school now and is starting to make progress where he was stalled out for years. After hours of constant work at his specialized school, he needs a break to just play and be kid. He loves doing puzzles and doing therapy-based apps on his iPad, but we don't force a schedule on him and follow his lead.
Basically, keep doing what you feel is right for your family. No one knows your son like you do and no one can tell you what is best for him... except maybe your wife :)
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ReplyDeleteDude, you do shit tons. You run his little ass all over NY doing stuff FOR and WITH him. My opinion has been that my 3 kids need all the interaction I or someone else can get with them. If you are not saying "Point to A" but he is in the pool, that's interaction. If you are not forcing him to imitate, but running to the store, that is life skills and interaction. You just can't be turned on 24/7. I have 3 freaking kids on spectrum. I'd love it if I had ABA therapists coming out my ass. But I don't. We had some sort of therapists coming to the house, and they weren't knowledgeable and were judgmental and we said "there's the door." Our kids are making progress. We figure they do therapy on each other by getting into each others faces to get what they need and want. While you might be wrong about his potential, I think you keep trying to make his life the best it can be. By doing this, you just might prove yourself wrong. I'm sure you'll be pleased to admit it.
ReplyDeleteNo one knows our kids like we do. No two are alike. There just comes a time when we realize as a parent this is not working. Don't beat your self up. It is not giving up. Your son is still at home. Living with you. He loves you and you love him. My son is 20. Not much has changed since he was 9. He is also non-verbal. Not really toilet trained. He does not have accidents. But, the min we get home he uses a diaper and cleans himself up. I suppose that is trained but just not the way we would like.
ReplyDeleteI face the fact that I am 46 and he is 20. He takes Depakote. Has since the age of 2. He is 300lbs and only thinks about food. We battle him...but that is not my point. He is also 6'3 and strong. We hang in there and are glad we can keep him home. Our kids are home with us. That is a good thing. God Bless. I read your page and have flash backs to that age. Each age has its new thing. As parents we try to outwit...create...fix...repair...re-do our life. It's a lot of work.
Everyone needs to vent, don't worry about it. I hope you find this is a place you can vent without critisism or judgement. It'd be lovely if that were the case, and goodness knows don't we need to vent especially with additional care needs for our children! The only place I've got is Facebook and that's like sharpening a knife, handing it to all my friends and family, and exposing my neck.
ReplyDeleteRanting is good for the soul. Keep it up :)
Stephanie
I related to your previous most "Not Much Teaching...", probably because I spent so many years trying to teach concepts that weren't getting anywhere (I have a 12 year old with severe autism). One thing the poster you mentioned above probably doesn't understand is that even though her child is nonverbal, not all nonverbal children with autism are the same. You are your son's parent, and you know what's best for him. That energy you expend beating your head against a brick wall trying to teach the letter "A" could possibly be better spent on other important things (such as life/social skills, or just having fun with your child, or preserving everyone's mental health). Not to mention, you want to keep yourself from getting burnout, as you could be doing this for life.
ReplyDeleteAlso, I applaud your courage to put yourself out there with your blog. I find that SOME parents and teachers of autistic children to oftentimes be incredibly judgmental, so there's no shortage of people that will criticize you. They know everything about their child and YOURS too. In fact, I find the constant judgment from others to be the most exhausting part of this disorder. Personally, I believe it helps to have a sense of humor when raising a child/adult with autism. Your posts often make me laugh, and I appreciate that. :)
Well said!
Deleteyou keep being you and do exactly what your doing. there is a reason why you have so many followers. I have often reposted your lists with the title " I love this guy... he says what i am too embarrassed to admit." I would say 90% of us can understand EXACTLY where you are coming from. I even printed the little white pill and took it too my Dr. It hit so close to home. My husband and I never saw each other we traded naps so regularly. I have enough Drs. and books by "experts" who don't get the day in and day out struggle. You do and you say it. and i don't feel so alone anymore. it always is the small things that get you. and yes, sometimes something as simple as bed time is a reason to celebrate :)
ReplyDeleteYou said that very well!!
ReplyDeletei think the reason your blog is so popular is because you tell it how it is, i for one appreciate your honesty, you dont sugar coat Autism in anyway and that is very refreshing!!xx
ReplyDeleteI don't think you've given up. You're 2 parents getting through each day. I have a low verbal, severely autistic son that is 18 years old. Not to scare you but......puberty is coming and the shit may hit the fan soon so brace yourself. Devoted dad that you are.....bitch away, please. I need to hear the truth you speak, it helps to read ....it helps to know I'M NOT THE ONLY ONE.
ReplyDeleteI would have to say, without any intent to butter you up buttercup, that this is my favorite blog. I get so sick of the sunshine rainbows and I wouldnt change my kid crap. I would give both my legs if my son could be normal. I also puke in my mouth a little when I get told "you have a special child because your a special parent" I say hell to the NO! I am a parent getting through each day the best I know how. I did and do alot of things differently than most asd parents and if I said what I think more they would probably get out the pitchforks and torches. So hang in there and be the voice of humor and reason you have become for so many of us.
ReplyDeleteAmen, Tammy!!!
DeleteHere here! I may bit a bit of a warrior but all the same I get tired and am just as likely to feel "daggers and despair" as I am "sunshine and rainbows". Oh yeah, let's not forget "wine and chocolate", which is pretty much daily. Thanks for keeping it real and putting a muzzle on the ever annoying Pollyanna. Keep it up Dad!
DeleteWe all have our moments of just "let it be"/ I have a asd grandson, 8 coming to live with me after being in the hands of CPS since June 2012! My daughter gave up I guess.. no word from her in months. This boy is my only grandchild, living in a group home with other disabled children.. not sure of their situations, yet he will be here in a couple weeks fulltime.. he talks and talks and talks... whispers like Brick on The Middle tv show... and then has his moments of tantrums. I know this is not going to be the easiest thing I have ever done... yet just loving him will count the most. I love reading your blog..
ReplyDeleteLove your Blog ! Some people want a reason to get worked up. Your not giving up and your not ignoring the situation, your choosing to do what is right for you and your son, your situation. Tell it like it is, people need to know so they quit judgeing. And those of us with a sense of humor and need for that release, LOVE YOUR RANTS !!! Why is it I feel comfort in knowing your vehicle is trashed too, your son had an accident too, your also singing along with Dora and listen to your own music via head set so not to upset the "King". You wouldn't be so popular if this wasn't something for everyone ! Thanks for being you !! :)
ReplyDeleteMy life does 99.9% revolve around my 8 year old ASD daughter. From the choice to divorce my husband, move closer to family, to fight to get her into a better school, to my choice of job (because I must work), etc. There are days I do work with her and there are days I don't. There are days I let her run wild in her room and there are days I don't. I am no role model, I am no hero, I am nothing other then a single parent trying to do my best for my child. I do because I must - the is the start and end to it - very simple. I get tried of hearing people say I am so "great, wonderful, etc" or "I could never do it" or any other "blah blah blah". That is it - do what you can do and what feels right to do for you and your family. One person can only do so much - and not all of us are the super hero autism warrior parents (if you are great - you rock!) but the rest of us are only human, and probably tired humans at that :)
ReplyDeleteTrue this is the internet age and any body can put up stuff...I take your blog as this.Just another parent going through the Autism stuff and trying to cope like the rest of us. As a parent of a non verbal Autism 7 year old girl - I can tell you that no one knows your child like you do. We use pictures with Angel like PECS because she understands them...they keep trying to force her to talk at school but Angel is not interested in language right now and honestly I don't think she understands why she needs it. I can tell however when she looks through the book and doesn't see a picture for what she wants she is frustrated beyond words. So why they are not pushing for a device that has more items on it so she can express herself is beyond me. I will continue to work with my daughter on this because she wants to tell us things and I can see she is really trying. I would just ask you...have you ever thought of trying music or gestures or pictures as al alternate form of language for you. Angels way of telling us she wanted things at first was to bring us a cereal box and throw it at you. Frozen items like bacon - in your lap during a show...lol. As she watched me fix these items...she would do everything but cook them and then come get me by the hand and take me to the kitchen where she had gotten out pots n pans to cook them in and the item defrosted by running water and placing it in there like mommy did. So she can't talk...we have physical things and pictures. Why not work with those things that they do use instead of forcing the norm on them. When we go on trips other kids love that she has her own language and they are now IN on the secrets we share. Its like they get to meet and play with a really nice alien that day. :)
ReplyDeleteHi Tonya, I am interested in Angel. We have a 3 year old girl with non verbal autism. A lot of the things you mentioned Angel does sound similar to our daughter. I'd be interested to know more about what has worked for you and what hasn't. Let me know if you'd like to correspond.
Delete"... and the wife and I are doing what we think is right for our son and for our survival." Amen! I think that's true for all autism parents. We're doing the best we can, making decisions for OUR children and OUR family.
ReplyDeleteI think that is all a parent can do is make the best decisions for our kids and family to the best of our ability. All children and situation's are different autistic or not.
DeleteI love this! I am not one to "sugar coat" autism either. You do have a lot of followers, and there is nothing that says they have to read your posts. If they don't like what you have to say then they don't have to read it. You are spreading awareness about what autism can REALLY be like. It is what it is.... Like it or not!
ReplyDeleteYour sincerity in all you go through is the inspiration you provide. You stand up and say hey this is us...we're nothing special bit we're doing it. That's what we're all here for. You do you man...you're doing it well.
ReplyDeleteI LOVE reading your posts because you sound so much like me! I also agree that sometimes the kids need "downtime". I think sometimes you push them too hard at home and they can't perform at school and (at least in our case) that is where the real learning is happening. Everyone needs a chance to chill -- you, your wife and your son. As for the "God doesn't give you more than you can handle" it IS crap. There wouldn't be suicide or child abuse if that were the case. I think the actual expression started as "God never gives you more than you can handle WITH HIS HELP." That is probably closer to true, but I still think the most accurate is "You never know what you are capable of handling until it happens."
ReplyDeleteOh but you ARE an autism dad role model. Just the way you are. You have as many followers as you do for a reason. Keep doing what you're doing. For what it's worth it helps me through so many days.
ReplyDeleteWe need YOUR help! Donate now to Helping Hearts for Autism, and give to families in need who are affected by autism.
ReplyDeleteBy making a donation to Helping Hearts for Autism, you can make an incredible difference in the lives of families like these. With the money collected, Special Learning will give away as many $500 grants to families as donations will allow along with an in-kind match of $500 in Special Learning products to these recipients. Families will be chosen by an unbiased selection committee on a quarterly basis. The need for donations for families like these is SO great, but if enough of us come together, we can certainly make a difference.
Please visit http://www.special-learning.com/helpinghearts_donations to know more on how you can help.
You don't have to explain yourself. You just do what you do. You're not going to please everyone and you don't have to! I like reading your blog because it is different. God bless you and your family.
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ReplyDeleteActually you are a role model; for the truth. I think, that is why I follow you. I do know your ability to share the rawness of a day is to walk in your shows. Thanks keep it up!
ReplyDeleteThanks for putting up this blog. You vent out most things that I feel myself as an autism dad and it helps to know that I am not alone
ReplyDelete