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Should I Be Doing More? Autism & a dad's guilt…

I’ve been in a bit of a funk the past few days due to a bunch of reasons that I don’t feel like sharing with y’all… but basically I’m back in that place where I don’t feel like I’m doing enough to help my son progress.

As you’ve read recently my son has made some progress behaviorally this past year and is for the most part a happy kid. And that is huge because at this time last year started the spring/summer of rage.

But aside from that he hasn’t made any significant progress this school year and it often feels like he is light years behind most kids on the spectrum…even those on the severe end.

Ok, so we don’t have alot of the behavior issues and he is happy and he’s not “in his own world” most of the time. He can be very related and affectionate and can have some great eye contact. So we are lucky in that area. And I already listed all the ways that my grass is greener (read that post HERE) and I’ve really tried to stay positive and look at things on the bright side…but I think this Autism Awareness Month got to me…wore me down.

During April I reposted a lot of my old blog posts. And I also read way too many other stories about autism. And I think
that got to me. And even reading some of the heartwarming stories got to me and made me realize how far behind my son is.

He will be 9 years old next week. He is non verbal. He has very low receptive language. Aside from taking our hand and leading us to the tv he has no way of communicating. He still has weak fine motor skills, has trouble using utensils, has trouble dressing, his point isn’t great, he has trouble pointing to what he wants on the iPad.

I’ve said it before and I’ll say it again. He’s got the receptive & expressive language of an 18 month old and he has been there for YEARS!

But he’s happy.

But should we be doing more? Should we be running ABA trials with him at home after school each day? Should we have him following a PECS schedule at home even if he doesn’t really get it? Should we be expecting more from him?

I wrote this in an old blog post last July (called “Happiness vs Progress”) and it is still true today…

“…When Kyle thinks you are asking something of him, making him work. Even something he knows like “point to eyes”, he gets this pained look on his face and he starts breathing heavy and he will try to get out of the situation…”

So, should we be pushing him harder? And expecting more from him? Or should we just accept that we have a severely autistic kid who will make little or no progress moving forward and just thank our lucky stars that he’s so happy and well behaved right now?

One of the reasons that I’m in this funk is because at least a half a dozen people have written me in the past 3 weeks and suggested that we try the “Son-Rise” autism program with Kyle. And singing its praises. And saying its really helped their ASD kids and their relationship with their kids.

And I feel like that is the ONE thing that we haven’t tried. We’ve tried all the teaching methods, diets, and treatments. It feels like we’ve tried everything over the years and I’ve written about everything we’ve tried HERE, everything except for Son-Rise and now I feel guilty about it. (I’m so freaking tired of feeling guilty!)

So we haven’t plunked down the $4400 for me & the wife to attend the Son-Rise training. But after trying so many other therapies & treatments over the years that didn’t work and after years of trying to “work” with Kyle at home with no success I’m done trying anything drastically new… especially if it’ll cost me almost 5 grand.

So for now we don’t do much “teaching” with Kyle at home and we don’t demand much of him. He goes to school each day and we get mostly good reports in his communication notebook. The wife has him involved in a lot of after school & weekend activities (swimming 3x a week, music therapy, special needs gymnastics, etc, etc) and for the most part he enjoys them and is well behaved at these sessions but he’s not making much forward progress.

And when school and all the activities are over and we do have him home he rules the roost. He is king of the castle and we pretty much let him do what he wants as long as he’s happy & it’s not dangerous…. watching tv, eating his books, grabbing fistfuls of cheerios out of the box and wandering around the house dropping them along the way, etc, etc.

And I was really starting to be ok with this the past few months because he was so happy and we were all getting along so well. But then I keep reading about all the progress that some kids are making with this method or that program and it still drives me crazy. We’ve been in this autism world over 7 years now and the guilt continues…and it goes away for a little while, but then it comes raring back, and it doesn’t get any easier.

Should I be doing more? Or should I have done more back then? Did we stop a certain treatment or teaching method too quickly before we would see any gains? Did we pick the right school? Should we have fought for more services on his IEP last year…or 4 years ago? Would an extra speech therapy per week really be making a huge difference? If we were filthy rich and could afford the best private autism school in the world and 40 hours a week of the best aba money could buy would our kid be exactly the same as he is now? Or would he be verbal? Would he be higher functioning?

Should I be doing more?

Oh it eats at me sometimes!

I’m so freaking tired of feeling guilty…

The end….


I don’t feel guilty about not trying the Son-Rise program anymore. From what I’ve heard & read & read in your comments it seems like a great program if you need to reach your kid / enter your kid’s world. We kinda don’t have that problem with Kyle. He has good eye contact a lot of the time. He seeks our attention sometimes. He is not always in his own world. He is affectionate. And I don’t feel like I need to be indoctrinated into a new way of looking at my son. I love him. He’s a lot better behaviorally (lately) than many ASD kids who are much higher functioning.

Lately he’s just the world’s biggest & happiest 18 month old. I’ve said it before and I’ll say it avian. You know the expression “if you’ve met one kid with autism then you’ve met one kid with autism.” Well I really feel that way about Mr. Kyle. He’s really seems drastically different than almost all other ASD kids we know.

So the guilt of everything else in this post still applies but I don’t feel guilty about not trying Son-Rise anymore (although I’m sure someone will leave a comment below praising Son-Rise and I’ll feel guilty again)


The end…

Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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61 People Replies to “Should I Be Doing More? Autism & a dad's guilt…”

  1. Autism Daddy —

    Thanks for the post about guilt. It was well said and timely. I was just having a discussion with a friend of mine (also a parent of a child on the spectrum.) I don't know that we'll ever get over feeling guilt, but we're learning to ignore it. 🙂 Good job also in recognizing your son's progress. I have to remind myself to look over the last two years or so when I'm looking for progress — it's hard for me to see it on shorter time frames. Great post!

  2. Anonymous

    To see if Son-Rise could benefit – all you have to do is go to their website and request the FREE packet of information. They will give you a follow up call but listen, the DVD gives you enough of the Son-Rise method so that you could give it a try 30 minutes a day. The first time I tried it I was hooked. My son was sitting in the corner with dolly in the running position and after 15 minutes of the basic therapy idea, he reached out his hand to me for the first time ever so we could walk in circles together. It was his very first spontaeneous effort to connect to me in any way. Then, I knew it was for me. It's free to get the packet, you can't lose anything by trying it out for 30 mins per day according to the DVD they will send you. I'm sorry to be another one of those Son-Rise people telling you this is worth it but I am. I love you Autism Daddy because your genuine love for your child shines through in every post even if you don't go to the start up I still love and follow you!

  3. Anonymous

    Listen, the Son-Rise program is the real deal!!! Even if you choose to send just yourself to the seminar to save money it is the best $ you'll have ever spent. The Son-Rise program sets you and your whole family up for success by changing you. Imagine sitting in a room with 100 other parents many going through the same things you do. Listen Autism Daddy, my son was at the 18 month level in most areas from ages 3-6 – YES until we started the Son-Rise program. It is the best decision I ever made for my son's treatment and you will not regret it. He is at about age 2.5 now and we continue to see progress. My son can say, "I love you mom" spontaeneously anytime he wants. Even if that was the only thing he gained from Son-Rise and it's not – that kind of progress alone is priceless. My son was not progressing under ABA principles, he just wasn't going anywhere. Is there a chance for more? Don't feel guilty, you do the best you can with the information you have. That's one thing you'll learn to leave behind if you start Son-Rise! So, I'm sorry to be another person out there saying – Son-Rise could be a life changer for your whole family. But, that's exactly what I'm saying! You are AWESOME Autism Daddy!

  4. Anonymous

    Wow! Anonymous here is sure one bitter, nasty, teacher! I hope a teacher with an attitude like this never gets within 500 feet of my kid. He/she obviously missed the point of your post. Autism Daddy and his wife, along with thousands and thousands of other autism parents work very hard with their children and we appreciate the work that good teachers do with our kids. I'm sorry that you, Anonymous, couldn't be one.

  5. Anonymous

    How do parents who demand so much from the school ask so little from their child @ home. You allow your child to control the home but when this child is told no and not allow to control a classroom and they have a meltdown and attack staff some parents get upset that staff want fight with their child and call staff stupid etc… a iep is only as good as a child allow it to be and a child is only as good as a parent so if you allow YOUR child to do whatever in order to keep peace why shouldn't the school do the same. The main thing is you want people to work harder on your child needs then you do.Just remember the iep stop @ 3pm,all weekends,holidays, so why aren't parents putting in the same hard work that they bully from school and staff on tax payer's money how dare you expect teachers and staff deal with your school age child body-waste what make you think someone want to potty train and mess with a nasty diaper UGH !!! and why would you want someone touching your child in such a way. Some parents need real talk and if the school dare to be honest you yell I'll sue you,you can't bully the public or even family to except being spit on,hit,kick,bit or just outright attack and say nothing.Since you know your kid so well why ask for people help just to insult them deal with it yourself and stop asking for help that you don't want.

    1. Anonymous

      Anonymous?? Do you have a child with special needs that you live with? because unless you do I don't think you have any room to judge parenting skills. I also think if you work in the teaching profession it might be time for a new path. I know there are some teachers with special needs children at home. But the ones who do not are able to go home to a life without having to constantly supervise every single thing their child does for safety and other reasons. But it doesn't end there because alot of autistic children have sleep issues as well. PARENTS know their children best and should be able to determine what fits their childs needs. Also, anonymous, I don't recall Autism dad saying he just ignores his child and does not follow through.

  6. Kyle doesn't seem like he needs something like the Son Rise. You shouldn't feel guilty about that. From what I've read of your stuff, it would probably just stress him out and you'd risk a regression on things he's already good at. And what works for one kid will not necessarily work for another. I feel guilty all the time because we're not doing anything extra with Goob. He's in the evaluation process and so far has been diagnosed with Mixed Recessive-Expressive Language Disorder, severe speech delay, and moderate developmental delay and we're going through the Autism rule-out. I feel guilty that I want to beg his doctor to say okay to melatonin or some sleep medicine. But Mommy and Daddy need to sleep too. I think as long as you are doing what your kid needs, you shouldn't feel guilty. You know your kid better than anyone else, including the doctors.

  7. Anonymous

    My Son is nine years old and we live in belgium ,europe. I started home schooling him since february this year.since then he has made so much progress and is starting to learn how to read and write.I wanted to home school him for à long time but everyone kept talking me out of It and now I feel so guilty I listened to them.if only …… I can't get those words out of my head.if only…….

  8. Anonymous

    I just started following your blog recently and first I must say how much reading your posts has helped both me and my husband. You are honest and straightforward and talk about things that most people seem to keep bottled up. It is definitely reassuring to read about someone who has the same thoughts and fears. I love your humor as well. Now…as far as feeling guilty, DON'T. The amount of thought that goes into what is best for your son daily shows how important he is to you. If he is happy and connecting with you that is what matters. Keep it up! Just try and celebrate your little victories and not worry about some new approach. My son is 7 1/2 and sounds very similar to Kyle actually. We celebrate the little victories like a calm trip to breakfast or the grocery store…or the fact that he has finally figured out how to put his socks on by himself after at least a year of practice (even if they are backwards 🙂 I know you already do this. Just don't forget it and let yourself dwell on that bigger picture again.

  9. You say Kyle is happy right? What if you kept pushing and tried this and that and the outcome was a angry fustrated with his life little guy? For a while we worked extremely hard at speech and other things and it seemed the harder we tried with our 4 year old son the more he resisted. As his 2 year old sister got older and demanded more of my attention I had to slack up on working with him and on his own he's starting to progress. He's actually saying a few words where as 6 months ago he never even said mommy. I honestly think he was feeling pressured and probably miserable. He use to have violent outbursts several times a day and now we only see them a few times a month. Honestly I believe as long as our children are happy then we r doing what we should be doing. It's that the ultimate goal in life anyway? Just to find happiness?

  10. Anonymous

    Son Rise is amazing and me and my wife both make decent money and still qualified for the donor scholerships….our price for the Start-Up training your referring to was $600 each!! Go for it…..I just found your blog and look forward to reading more!!

    1. Anonymous

      The Autism Treatment Center of America does everything they can to make it possible for even parents having financial problems to be able to attend. DITTO to this post!

  11. karen

    One thing doing sun rise would do is improve your attitude towards him.I see you are guility angry fraustrated all the time and believe me it kyle can probably detect it whether you know it or not.I would not personally spend money on myself or allow my wife to go on woman vacations all the time untill my son at least used pecs and shows improvment in communication .just my 2 cents.

  12. Anonymous

    My friend, we're running a marathon; not a sprint. Many more highs and lows to come.
    The most important thing is that you "show up". You "show up".

    Live strong,
    From one aut dad to another

  13. Personally, I'd use the 5K to go on a holiday/build a new kitchen/landscape your garden, or whatever floats your boat.
    I'm not being flippant.
    Quite early on in our autistic journey, I ditched the guilt. I was torn inside out trying to be ST/OT/psychologist/teacher/social worker etc etc…but I had my road to Damascus moment when I realised that anybody can train to do those jobs, but nobody else can be my son's parent.
    Home is home. The unconditional love and total acceptance your child feels from you and your wife is way more valuable than any therapy.
    I hope you feel better soon XXX

  14. I hear you Autism Daddy… I often feel the same way. But the reality is, there are so many "therapies" and only so much money to go around. Maybe this will help… is $4,000 worth the promise that it might help Kyle, or could you use that $4,000 for something else, like respite, or saving for Kyle's future as an adult? I think as parents we have to try things and if they don't work try something else. Maybe Son-Rise will help and maybe it won't, but it's not likely it will cure Kyle… it's more likely if anything it may improve some of his social skills and maybe some communication. So ask yourself, how much progress is worth $4,000? For some people, not much. For others, that's a lot of cash to spend. Only you can decide. It's going to be what it'll be.

  15. Anonymous

    I hear you My Jake is turning 12 this month, and we don't put many demands on him at home.I don't believe anything we could have done would have made him verbal. We tried everyting, shots, chelation, special diets, 40 hours each week of early intervention. It is what it is, I want him happy. Happy Jake= Happy Family. Happy is the best I can ask for at this point. It is what it is, I have to accept it.

  16. Anonymous

    you can see the data for the SRP at their site…now backed by science, and voted #1 alternative treatment at last Autism One conference.

  17. Anonymous

    I walk the line of doing enough/too much all the time but I fight the guilt. All guilt does in this kind of situation is paralyze when you need to act and disturb when you need rest. I just keep telling myself this when it gets to me.

    I have three kids, two on the spectrum. One has Asperger's and the other is lower functioning, non verbal, has very few self care skills, etc. I wondered if you had ever looked into a communication device for Kyle? We had no idea how much my non verbal child understood prior to getting his AAC.

    A few weeks ago we started the GAPS diet. It is a huge commitment but children and adults have healed their bodies and minds on it. My child with Aspergers is already more easily focused just from having stable blood sugar and my guy who is non verbal has started eating fruits and vegetables. I wanted to start the diet for at least a year before we began; sometimes you just can't do one more thing until you find suddenly that you can. We just can't beat ourselves up for the time we spend waiting or resting. We're only human.

  18. Anonymous

    ummm . . . before you send the money — ask to see their data. $4400 on word of mouth ain't great. I will also say that Catherine Maurice really had a pretty scathing opinion of Son Rise in her book.

    On the guilt front — yeah, I'm all there. I'm a single mom whose hubby bailed, so it bugs the crud out of me that I can't spend the time that I was spending. I just try to focus on how much I love my son, and the fact that he is happy.

    You have been hanging in there a while . . . and you are still going. Pat yourself on the back for persevering. And thanks for stating it as it is . . . for a lot of us.

  19. You are not alone. Another challenge I struggle with is balancing the needs of other family members (one fewer, since my recent divorce). I just spent a lot of $$$ on a special needs bike and a trailer for transporting it just so my ASD daughter can ride a bike, but also so she and I can get exercise and so her brother and sister can finally go on family bikerides. They are 10-yr-old triplets, and I've waited so long for something as simple as a family bikeride. My daughter is also very non-verbal, but we have overcome some major behavioral issues in the last few years. Is it enough that she is happy, and we embrace her? At some point, I think we have to say "it is enough." Because SHE is enough.

    1. Anonymous

      I like this comment, its how I feel about our son too.

  20. Anonymous

    Hi Daddy, please stop beating yourself up and feeling guilty. Yes I too have a son with autism and he was in the same place as Kyle at that age except mine had some real challenging behaviour. We tried all the diets and programmes available to us at the time but i had to stop, we were going mad with it all. I started treating Joe as a normal child – just teaching, guiding and loving him. It was not easy easy but little by little he progressed. Its been an uphill battle and the fights I've had over education you wouldn't believe. I am exhausted (I'm afraid Joe's dad fell by the wayside a long time ago)And now he is 19, is in the middle of his high school exams, college applications are in and he drives. He has friends, socialises and does all the usual stuff a 19 year old does. He,s a bit wacky but that's Joe. So keep the faith, you half way there because your Kyle is happy and healthy. Well done : )

  21. Anonymous

    gosh, i knew as soon as i started reading you were going to go there. i was one who wrote about the SRP. we are attending the program in june, due to a lot of the feelings you're talking about. they have scholarships available and a sizable discount for a referral….it doesn't have to cost that sum, which is why it's taken us 2 years to get to the point of even bothering to call them. the program is as much for you as it is for your child. our younger child w/autism is exactly like kyle. with all this being said, there are several books you can read including daniel levy's book, "10 things". he's a certified son-rise teacher. there is great info at the Autism Treatment Center of America's blog/website/and fb page. after a year and a half of alcoholism and another 2 years of complacency, this is the route we're going.

  22. Anonymous

    I feel for you. There hasn't been a day in almost four years where I didn't feel like I should be doing more. Right now. What doors are closing right at this moment?

    The greatest progress we've had against the core detachment of autism has been from DIR/Floortime. Like Son-Rise, it's a relationship-based approach, but it's supported by published, peer-reviewed evidence. And you can start without writing anyone a check for $4,400.

    You can try reading the book Engaging Autism, by Greenspan and Weider. Check out the videos at ICDL. Like them on Facebook, and check out the clips they link to. You can start applying the ideas on your own, and seek therapeutic intervention as it makes sense to you. The Floortime therapist is really there to teach you how to continuously improve your connection with your child.

    The progress my son has made with Floortime is the kind that's hard to quantify, but you know it when you see it. I used to have to work desperately for my son to glance at me, but now he sustains eye contact even when I ignore him. He shares joy with me. He engages with me as a person.

    If I can help you with more info, I'm happy to.

  23. I wish I had something smart to say. I constantly feel the way you do, it gets tiring…very tiring. I feel like we never get a break around here. There will always be something else or new we can do or try. It's like a never-ending marathon, painful and exhausting, we fight going uphill and we enjoy the flat surface(there better be a big reward at the end!). I think you guys do a great job with "the king", most importantly you have an unconditional love for him:) I have an (almost) 8 year old boy with Aspergers, he might not have severe challenges but I share with you the same feelings because like you and all parents out there we want the best for our kids. I try hard not to become discouraged (and it's WAY hard) and it's a daily battle. The programs available for these kids are so dang expensive and very few! if we can afford it we give it a shot. I try not to let the guilt consume me and I don't stop fighting, even if, from time to time, we are only walking small steps… Kyle is happy right now and that alone is a great thing.
    Yes, I ramble a lot BAHAHA…I enjoy your posts very much, you are truly somebody I look up to. Best of luck to you and your family 😀

  24. Wow! I have been having the same dialogue in my head as well…Our daughter is running somewhat parallel to your son.

  25. Oh Daddy! I have felt like this many times although My David is verbal is there wasn't 2 other kids in the house he would be the ruler of the after school day. Most days he come home and plays on or watches videos on the computer. I feel guilty that I don't have him in after school programs, that I don't make him play outside with other kids, we never do the Speech therapy homework it's just to much. I feel guilty over the things I can't buy that might help like an I-pad or any kind of tablet. That being said I have to let it go and so do you. Our kids progress isn't measured by evaluations and test you see he has made improvements just not in all the ways he can, just keep trying to get through to him, just keep loving him. You are a role model of an Autism daddy, I wish that my kids had somebody that was so accepting and loved them as they are.
    What do you want to be when you grow up? Happy
    You are doing a good job if he's happy that is what we all want from life.

    1. Let me explain that a little I'm a single mom of 3. My David is ASD and my little boy is struggling. He has progressed so far on Speech to the point that he is mostly working on pronouns and grammar now. I correct it when he says it wrong but after 8 hours of school I don't want him to get overwhelmed. It's often a struggle to keep the kids from being mean to each other, fed fully(because of the diet issues) and clean because of the texture and attention issues. Most importantly here is that they need my attention doing something other than telling them they are doing something wrong. Just like Autism mom's and daddies need people who do more than tell them they are doing it wrong.

    2. You should probably do the speech therapy homework. That doesn't sound like an unreasonable burden.

  26. Deb

    Neuro-typical children have years that they make huge steps of progress, and years that not a whole lot happens. It's accepted as totally normal. Our kids deserve the same leeway.

  27. Anonymous

    I am not going to sit here and tell you to stop feeling guilty because I feel the same exact way! I am also guilty about taking it out on my husband and 2 nt daughters. Although I moved away from family and friends(from SI to NJ) to be closer to our RDI consultant and have always tried new and different things it never seems to be enough…..f%^&in suxxxxx

  28. Just know that you are loved. He is who he is and you are who you are. Just human. Just a family.

  29. Sometimes it feels, as parents, that we are running on ice trying to get our kids to reach those milestones. My son is nine and also non-verbal. I often wonder if we are doing enough. I think we just need to enjoy our kids for who they are and the rest will come. I went to the CARD conference in Albany last year and was really encouraged by the keynote speaker. It was all about optimistic parenting and he has a book out with the same name by V. Mark Durand, Ph.D.. It is so worth the read and is as much about you as it is him. You are a great dad and you shouldn't doubt that. We all have these moments of insecurity but I think that if your child is happy then you are winning the battle.

  30. Hey Austim Daddy – I feel for you at the moment and dragging ourselves out of our funks can be so hard. I figure that we can only do what we can do and you and your wife have already tried so many things with Kyle. You both survived the Summer of Rage and maybe you needed this time to regather. I like the suggestion above – if you are interested in the Son Rise process get some of the stuff cheap and watch a little – then assess if it feels good. You and your family are fantastic, you're together, and I agree that you all needed some downtime as Kyle needed some happy time. ABA is working here but it is hard, it has to be constant, and for a while my son fought engagement and compliance – it was hard for all of us.

    Take care


  31. Karen Reed

    I have 4 kids, 2 of which with ASD (1 high functioning and the other low). Sometimes I feel like with all of the therapies and doctor visits and activities along with everything for my other "typical" kids that I am going to pass myself either coming or going on the street. Sometimes I even wonder how my hubby and myself even do it. The guilt sometimes eats away at us too that maybe we don't do enough. We've been told we should change their diets….hell, I'm just happy if they eat. Been told to try more herbal supplements….I'd just like to have them take their normal meds without a fight. We should be more strict and not let a meltdown every Sunday keep us from Sunday school…but it's too over stimulating. I think sometimes we could always do more in our minds but in our hearts, just having that smile and knowing that our children are happy, we're doing our best. I know of other parents who have either lost their child or have a child who not only can't talk but cant walk or feed themselves or anything, would love to be in my shoes. I love reading your blogs. Just know that when you speak, you're not alone in this fight.

  32. Anonymous

    Hi we are doing the sonrise program with our son Cameron for 18 months now and I have to stay the change has been amazing. Plus the additude that sonrise give you that you are doing your best and that your child is doing his best really helps me. Cameron sat for hours in a corner fiddling with a piece of string and didnt know to eat.
    He is now looking us to interact with him. Has amazing eye contact and now has over 50 words to help us know his wants.
    The other night he wanted his dad to play with him so he went over to the sofa grapped his dad's hand and said "Come on". I could cry!!! I love when he lets you know what he wants
    You can go on their website and get the start up for FREE. Dvd are posted to you and it gets you started and if you think it is right for you and your family then try to go to the Start Up. We went and it was life changing.
    The sonrise program has made our life as a family a lot less stressful. Plus the sonrise additude has helped our other boys do better in school.
    God Bless and always remember you are doing the best you can.!!!!

    1. Anonymous

      attending in june. cannot wait.

  33. Anonymous

    you can only do as much as you can on that day and no more! my daugter has Down Syndrome, and ASD as well as many other thing's. most people don't reconise the ASD because of the Down's my daughter is 16 and now at a 2.9 year old. keep trying new things and if it does not work throw it out and don't stop to think about it! no what if's. keep the fight going because no one will do it for you and as shore as hell nobody is going to help your child except you. your wife and you doing a great job don't give up…. 🙂

  34. Anonymous

    I had the same child as you back when he was younger. He was non-verbal, had major sensory issues (couldn't eat solids, etc.), and hovered between our world and his.

    Don't feel guilty. Instead, don't stop. Just do ABA stuff after school. Do it at night. Do it on weekends. Get others to help you do it (college kids helped us for free as practice). Anything you can do….do it. Anytime you can get him to even make a sound rather than point….you have won a victory. The war is ongoing but do not quit. Don't have guilt. FIGHT!!

    My son is now a teen who wants to drive in another year or two. He eats like a horse, can work a clutch, and has friends. He still has Autism and does some of the stereotypical stuff but we keep fighting. He's an inspiration. Without him, we never would have gone on to adopt other special needs children.

    Don't stop.

    Julie 🙂

    1. Let's remember that Kyle is 9 and he has the receptive language of an infant. A 4 year old and a kid a few years older who is about to start driving soon are incomparable.

    2. Anonymous

      Sorry julie–I just had to comment..Really, your son was like Kyle and and now he can do all those things? I find that unbelievable and so hopeful–my son is just like Kyle and he is about to turn five and while I cling to shreds of hope, I have almost let go of dreams him being like your son….. I hope to God, that is my son's future….Nancy

  35. Trust me, AD, you are doing a lot more than other parents of kids I personally know who have autism. You have educated a great many of us on resources available to us and reminding that we should be doing (estate planning, for example). You said it yourself, your boy is happy and isn't that what every parent wants? Enjoy Kyle for who he is – cheerios, drool and all. Down the road, you may want to explore other programs. I know my situation is different than yours, but I do relate to some things. I get burned out a lot and I always think I could be doing more. I wish you all the best.

  36. Anonymous

    Dear sir,
    Anonymous earlier suggested Daniel Levy's book 10 things you can do to help your child with autism right now. His DVD comes with the book and a 30 minute phone consultation I believe. My son is four and sounds so much like 'Kyle'. In December I attended the Son Rise Start-Up week event. I can tell you it is mainly about one thing, not giving up, and well…. Being happy doing it. It is about sincerity, persistence, and your own motivations on motivating your son while discovering what motivates him. Personally I saw changes in my son after applying Daniel Levy's strategies and they were with eye contact, and joining principles. I celebrate his unending joy of bouncing. I also suggest the Son rise miracle continues book, breakthrough strategies DVD (with Raun Kaufman), and any of Barry Neil Kaufman's lectures such as Autism can be cured, the myth of learning disabilities, Happiness is a choice 'your coach in a box', and his 12 lecture set which I recently purchased on Amazon on cassette for a very small charge considering. Before you drop all that cash try these things and think how you feel about your son. Get happy, get sincere about who he is and who you'd like to help him be.

  37. Anonymous

    This won't be popular, but YES, expect more! If you don't expect more from your son, why should he do any better? My son is 17, Classic autism, ADHD, and Bipolar. Our salvation came in the way of a wonderful behavioral therapist, who had an adult autistic son. We were pretty much doing the same as you. Going with the flow, trying to prevent meltdowns and keep him happy. The therapist made us see that we were not doing our son or ourselves any favors by letting him run the show. She told us what we needed to do, but more importantly, WHY. It was a tremendous help, and also helped with the extreme guilt. BTW, I think you are a fantastic dad, and your son is very lucky to have you.

  38. pixiestyx

    i can feel you on this one bigtime im in the same place right son had a pretty bad seizure monday night and since then talking to his new tss,bsc,mt,and docs(all new cause we moved to a diff state 6months ago)i realised he has been having them since 2yr old,wow i felt guilty i didnt push more then..but now i can only move forward…how much could or would things be diff..we learn and move on and better ourselves..from everything i read u r an awesome dad and are doing wonderful! i totally get how you feel..

  39. Anonymous

    Wow! I can't tell you how much I can relate to this post. We've done so many things that have had minimal or zero effect. While I used to get hopeful and enthusiastic about something new, now I look at the time, the money, the energy required just to try and think "I'd do it if I knew it was going to work, but past experience has told me that is unlikely." Yet, what if this new therapy, doctor or technique is going to make all the difference and I just didn't pursue it because it might not work? Isn't that selfish of me? Usually, I don't rule it out. I put it in my Bookmarks and save it for review for later. Later usually doesn't come.
    There is a Sonrise DVD and the book "What You Can Do Right Now to Help Your Child with Autism" which is based on Sonrise. That may be a way to look into it before you fork out all the money and time. Then again, maybe you want to think about it later…

  40. Anonymous

    Dad, You're doing fine. I still ask this question and I have one who is 18 and one who is 14. My 14 year old is more impaired. If you're open to hearing supplement suggestions, I can tell you anything that helps that weak muscle tone, helps the mind. They are completely inseperable as I've learned over the years. First, I'd suggest d-ribose and NADH. On the internet search d-ribose and the university of Arizona and the success these were with ASD kids. My daughter could tolerate 1/2 tsp/per day. However, the greatest tip anyone ever gave me was to give her high EPA fish oil, at leat 800mg per day.I use Nordic Naturals, but any high quality fish oil that is high in EPA will work. I've tried fish oils in the past, but the high EPA did wonders. She talks a lot more now, but it's more than just talking. It was lifechanging for us. I'm an old hat at this, back when the "A" word couldn't be found at all and teachers blamed my husband's and my parenting (we were great parents!). I just hope to share some things I've learned along the way and hope it saves you time. My friend, try the high EPA if you never do anything else.I had tried other fish oils when my girls were younger and didn't get what all the "hubbub" was about until that dear friend told me to target that specific EPA fish oil. Most of all, you sound like an incredibly involved dad, which is more than most kids have. Blaming yourself is a waste of time. I indulged in this for many years. Sometimes, it still revisits me, but I've learned to channel it in the good things I've done for my girls. When I ask myself, if anyone else had raise them, where would they be? Then the answer and the feeling is so crystal clear and honest. I am great for my kids. I, who love them more than they will ever know.

    1. Prior to his ASD diagnosis, my son was just language delayed. He stopped pointing and imitating sounds at about a year. When we first started therapy, he was 17 months old. He started talking again 2 weeks after taking Nordic Naturals. He was still delayed of course. Someone explained that it reduced inflammation because it balanced out the 6's and 3's. I don't know why it worked it just did. We noticed that if he missed 2 days he started going backwards. We don't notice it at much now but, he still takes it 95% of the time. I would rec. trying it as well.

  41. KCM

    I hear you, I really do. After school? Our youngn doesnt do anything extra. He watches dvd's, he plays with his toys, he may relate to us and ask for tickles etc But mostly? He just does his thing. The only thing we do is stop him making demands and 'ruling the roost' because he did this for years with his grandparents and when he came to live with us full time I realised that he had had no boundaries. So, slowly over time,i introduced these to him. I took him as the child he is and treated him as such. Sure, he has autism and he is on the low functioning end BUT he is also a seven year old boy that thought that everyone's tasks were to cater to him. With another child on the way we needed to make sure that he got an idea that sometimes we were going to say no.. And that's all we do. We dont even do what you gyus do: No extra therapies, no after school classes nothing…
    I often wonder if we could be doing more but we are doing all we can as his parent to parent him and sometimes even that is exhausting..

  42. Anonymous

    My son is 7 and he is very much like your son. Progress for my son is SLOW, but there is progress. He has language, a few words. Some of his words are inappropriate, but he uses them appropriately. I've read you're blog and facebook page for a while now and I feel like you're my brother from another mother. I also have days, weeks, months of feeling like I should be doing more, but I don't know what to do exactly.


  43. I think we can all relate on some level. I go in waves all the time. I am one of those people that talked about Son Rise on here. It took me 2 years (w/ lots of guilt) to get the courage up to leave my family and go. I knew in my heart it was going to be a great experience based on the materials and DVD's I had. I liked their approach. I'm certain you'll benefit from this which in turn will benefit Kyle. A large part of Son Rise is about you. This therapy is the first one we've done that felt good, natural and fun… not forced. I'm certainly not here to make you feel guilty or preach Son Rise. I just want to share what a profound impact Son Rise has made on me, my son (turning 8 next week) and my entire family. Thanks for sharing and good luck.

  44. Diana

    I understad that fucking feeling called guilt, sometimes I feel like I'm the worst mother for my kids,but between my almost 3 years old asd son and also the 21 MONTH old twins and with NO help other than the 20 minutes from my husband only when he comes early, (my mother lives 3 hrs from me,and the rest of my fam and friends in oTher country) Im feeling exhausted,overwhelmed, and I don't have time to teach him,playing with him,be a good mother,I take hime to speach and ot 3 times per week but I feel like I'm not doing enough at home,I'm always complaining about EVERYTHING. But please let me tell u that ur blog and histories made and make me smile,cry,think. U are a GREAT dad (I Fight with my husband bcause he think that our boy is just a brat,and he doesn't involve that much in this process)so I really ADMIRE u,keep walking 🙂

  45. Anonymous

    There comes a time when u realize that a happy, healthy child is really the most important, autistic or not, it should be every parents hope for their child.

  46. Honey Halley

    Dear Autism Daddy, Please stop feeling guilty…It serves no purpose and you and the wife have no reason to feel guilty. Kyle is happy…That is the most important thing…If you had pushed him; would he still be happy? Probably not. You both do so much with him. If he was ready to learn what the others programs have to offer, I think you would see that in him…I know what you mean about how it feels like his symptons are worse than others…It actually feels like I am reading about my grandson, Noah when I read your posts. He is at exactly the same level as Kyle in every way…I don't believe any of the programs are going to spark anything in him that will last. I still have hope that one day showing what he knows will come easy to him like the autistic girl who sat down at a computer and started speaking through it for the first time…I think if you have tools around the house, when he is ready that day will come. All kids are different and I think a parent/grandparent knows when and what to push and when and what to back away from to best fit each child. You're doing a great job! Don't let anybody make you feel otherwise!

  47. Dear Autism Daddy,
    You can guilt yourself to death and it won't cure your son. Been there done that! Yes we have tried many many things………. some have helped some have not. And yes we will keep trying…… It's what we do! You never know what is going to "click" with your child. I do understand how you feel. I really am happy for the parents of the children who have "evolved"…."been cured"….."improved by leaps and bounds" but…… I'm also tired of the snake oil salesman trying to make money off of my kid! Have you done enough for your kid? In your heart you know you have! Stop beating yourself up! We are but human my virtual friend……… Look at your kid….catch him smiling when he doesn't know you're watching…. catch that moment of wonder in their eyes…. though fleeting it may be. And those break throughs….. even rarer…. are the most precious. Step outside your life and see yourself…. and the wonderful things you HAVE done for your child…. and keep on keeping on…… 🙂

    1. Anonymous

      Yes this is beautifully stated!!!

    2. Tina

      Beautifully stated.

  48. There comes a point where you have to let go of the guilt. It doesn't help you or your son. It sounds to me like you're already doing plenty; there's nothing wrong with giving him time to just be a happy kid, as well.

  49. Anonymous

    I think we all feel that way. It's something I often wonder myself. I have someone in my life that tends to question every decision we make for our son and they don't understand why we "don't show him who's in charge." I try to explain it doesn't work that way with an ASD child but it falls on deaf ears. We all have our battles and our guilt. To me though they are HERE. They are HAPPY. It could be a million times worse. So I just thank my lucky stars because I know there are plenty of parents out there that have lost a child and they would love to be in our shoes and have our worries. So when there are bad days and I want to run and lock myself in the bathroom, I remind myself of that. LOL. Hang in there!