Discussion Questions

Autism Dad: I Need to Know

1) How do you express your love to your autistic child? And is he/she able to understand and reciprocate with words or other gestures?

2) In general, how do you teach your autistic child to understand, cope with and express a range of emotions, from love and joy to frustration and anger?

Zoning Out

1) My second born, Ryan, was speech delayed, which worried us that he too was headed for an autism diagnosis. For whatever reason, he caught up quickly and now we can’t shut him up! I would like to hear from parents who have more than one autistic child. How do you cope and how have you had to adjust your expectations for your family?

2) If you have only one child on the spectrum, how do you ensure that your normal functioning child doesn’t feel he/she is any less loved? How do you talk to this child about his autistic sibling? When is the appropriate age to do so?

 “Shopping”

1) Does anyone have tales of an autistic child who also shares Ben’s grocery shopping compulsion?

 2) What compulsions does your child have? What have you done to address them?

 3) Ben’s diet is generally limited to pizza and hot dogs and Mac n Cheese (but just the brand his mother uses). He will eat ice cream but not frozen yogurt. What are your experiences with broadening an autistic child’s diet? What has worked for you?

“Barbara”

1. If you are a single dad or mom, what challenges have you encountered communicating and coordinating with your ex?

2. How have you and your ex managed to put animosity or resentments aside and do what is right for your child?

3. Can you recall an individual who helped guide you in your journey and navigate the often convoluted autism services delivery system?

4. Do you believe in fate or the idea that things in this universe happen for a reason? Or is what I describe in this essay simply a series of coincidences?

27 Responses to Discussion Questions

  1. Kathy Talbot says:

    Quinn is our two year old that has autism. He is a triplet and has a brother and sister that are typically developing. Right now his only compulsion is the alphabet. He loves letters. His expressive speech lags way behind what he comprehends right now, so I don’t really think a fascination with letters is such a bad thing! The good thing is he is saying more every week, so his therapy is already working to help him find his voice. He is a terrible eater. I dream of the day he will eat chicken nuggets and mac n cheese! He drinks a lot of pediasure! We started working with a a dietician recently and are trying to use food chaining to get him to branch out. Maybe you have heard of that approach, but basically you take foods that are already acceptable to give that child that food along with other very similar foods to try to encourage them to branch out. If Quinn will eat a french fry from McDonalds, will he eat one dipped in different condiments, will he eat fries from Wendy’s, will he eat a tater tot…? So far he hasn’t branched out too much. It’s difficult because he is a toddler and they aren’t the best eaters anyway! I wish the foods he deemed acceptable were a little better for him! He is the carb king! No meats, fruit or vegetables cross those lips, just chips, crackers, dry cereal, strawberry newtons, fries, tater tots, nutri grain bars, that’s about it! Thank god for pediasure!

  2. Autism Dad says:

    Hi Kathy: Quinn sounds very much like Ben in the food arena. When I take him for frozen yogurt, he insists on only toppings — no yogurt. I wish Ben had the alphabet compulsion — who knew there was such a thing! I’m afraid to admit I have yet to discover pediasure, nor has his mother. I will definitely look into it. Thanks for taking the time to share your comments, Kathy. Regards, Autism Dad

  3. Wendy says:

    Adam, Ive been trying to come up with something helpful to say here, but I’m coming up blank. Maybe I’m putting too much pressure on myself. But I want you to know that I read your words and I get it.

    My son is 7. PDD-NOS & ADHD.

  4. Autism Dad says:

    Wendy — I can totally relate to putting pressure on ourselves. I hate when that voice rears its ugly head :). But I hope you’ll continue to comment as you feel the want or need. Write just to write……..Regards, Autism Dad

  5. Jean Nicol says:

    Hi, I am continuing to read your posts and can answer one of the questions in your “discussions”. I am always hesitant to recommend The Eating Game (as it is my invention) but you asked right “What are your experiences with broadening an autistic child’s diet? What has worked for you?”? And if I don’t tell you here you may never hear about it right!
    I invented The Eating Game without planning to really; I was making 1 of something for a 6 year old friend, named Ethan, who is autistic. At the time he preferred to always eat hot dogs and rice; oh and he liked pizza too! So I set out to create something to help him to continue to be in control of his food choices but to expand them to have a more varied, healthier diet. I knew it would have to be very visual and offer structure and routine to make mealtime very predictable. When I was finished my creation I knew, from experience and my knowledge of autism, that I had created something that could help many more children who have restricted diets. And so it evolved ~ The Eating Game ~ it worked for Ethan and is working for many others (testimonials http://on.fb.me/bpwxvA ) Ethan turned 10 yesterday, is still using The Eating Game and eats almost everything!
    I would encourage you to check it out. I always hope it will help another child.

  6. Jean Nicol says:

    Since Ben likes to shop, find a picture of a new food, or one he hasn’t eaten lately; take the picture of the food to the grocery store so he can find it to put in the cart. Some parents might even let the child pay for it and carry it home. “Buy” into it as much as you can!

  7. Autism Dad says:

    Jean, what a brilliant idea and it’s so visual — I must try it! Hmm…I wonder if it would work with broccoli :)

    Regards……..

    • Jean Nicol says:

      If visual is good for Ben, have you heard of The Eating Game ~ making a big difference in many lives?

      • Autism Dad says:

        Hi Jean: Hope you are well. This message you sent a few weeks back was put in my SPAM folder. I have since “rescued” it and placed it in the comments section where it belongs. I am very interested in purchasing The Eating Game, but that will have to wait until I find a job. Please stay in touch.

        Many thanks again,

        Autism Dads

  8. Geargoyle says:

    I just found your blog today and I want to say “thank you” for sharing your words, your experiences and your honesty with us. My youngest son is also autistic, and he’s started kindergarten this year. He faces a lot of challenges, especially learning to work with the routines and rules of school and working within a group of children he doesn’t know. I am very grateful for the teachers and staff at his school, and he’s making a lot of improvements in some areas. I want to offer you my encouragement, I can tell from your words how much you love your sons, and I can see in their faces how blessed they are to have you. Don’t let your worries get in your way. You can do it, your love for them will show you the path.

    My son’s diet is also quite limited, he hardly ate meat at all for his first few years, and even now only accepts hot dogs and chicken nuggets most of the time. But he loves eggs, and they’re always quick and easy to make if he can’t get along with the meat I’ve made for everyone else. I read a study of neurotypical children, and they found adding fun nicknames to food can be a good way to encourage kids to eat more. Like calling carrots ‘X-Ray vision carrots’ and the like. I always feel silly, but I’ve tried it some and I see every taste of a new food as a victory, even if he spits it out. I always praise him for really trying something. Over time I think it’s helped him try things more since he knows I won’t make him try more than one bite if he doesn’t want more, though I encourage him to eat ‘a little more’ if he says something tastes good.

    Thanks again, and I wish you all the best!
    Geargoyle

    • Autism Dad says:

      Thank you for your beautiful letter. Yes, Ben also loves eggs, not sure why. Daddy doesn’t!:) I’d like to write more but I have to run now to pick up my boys! Thank you again for sharing………

  9. Anastacia says:

    Hi Autism Dad, I have a 7 year old son named Aidan who has autism. I wanted to respond to the food question as it was huge for us too. Aidan successfully completed a food therapy course at Sacramento State University last year that really helped broaden his menu. When we started, the only things he would eat were chicken nuggets and fries. The therapy was a combination of ABA therapy and an infinite amount of patience. Aidan was deemed a graduate when he started eating pizza, hot dogs, red meat and (surprise!) broccoli! These were all foods he rejected in the beginning.

    My husband and I learned several things over the course of his therapy. First and most startling, we realized we were part of the problem. We got hung-up in fixing two meals at every meal time (one for us and one for him). He should have been eating what were eating. On top of that, we were not so good at “waiting him out”. We would feed him whatever he wanted to ensure he wasn’t hungry. A healthy appetite was the best motivator in this case. This is not to say that we starve him now but we “upped the anty” by insisting he engage us to get fed (this is double duty in getting him to verbalize as well). After several weeks, I believe he realized what he was missing with all these new foods coming into his life. He was being stubborn but we were feeding into it with our own behavior.

    On a closing note, Aidan’s three year old cousin Evelyng was the best food therapist in the world. She would eat and share with Aidan which got him going. Peer pressure at it’s finest! They were eating (no, scarfing) Nicaraguan BBQ last July 4 (I still laugh).

    I know this is a long winded comment but I thought maybe relaying how behavior modification (on everybody’s part) may be a place to start when tackling the food question would help.

    Great blog, by the way.

    Anastacia

  10. Lisa says:

    Hi Adam,
    I happened to stumble into your moving blog.
    You have beautiful sons that you can be truly proud of! What wonderful boys!!!! And your deep love to them speaks out of your words and out of the whole idea of this blog.

    While I do not have kids diagnosed with autism, I have to deal with it on a professional level as a coach, working with people who live with or who amongst their clients do have people diagnosed with autism.
    So I want to just give you a little kaleidoscope of viewpoints that I have encountered over the last few years:
    * While we can be happy to have medicine developed to an enormous level, there might be a danger in taking a diagnosis as a limit to our “thinking beyond limits” and to our visions.
    A colleague of mine had a daughter diagnosed with all kinds of disorders. The mother just refused to believe in the limits the doctors saw to her child’s prognosed development; she just believed in her and treated her according to her beliefs. (And she was not some naive woman refusing to see “the truth” but a highly trained therapist herself who just one day decided that there must be more to what we know and see and believe possible.) She just did not take the diagnosis as a kind of verdict but let her fantasy and visions go wild. Not to press her daughter into something SHE wanted for her, but clearing the way gently to make any unfolding of potential possible. With love and patience and love and love and love and patience and love …
    To make the long story short, nowadays the daughter is a therapist herself.
    * I’m sure you already have read the books by David Tammet, diagnosed autistic himself; they sure give a wonderful insight in how people called autistic may experience the world outside. What it may mean to them to be touched physically, to communicate with others, etc. – Even if he – as a savant – is a very special case – every human being is special, and every single one may reveal wonder over wonder.
    * By the way- speaking of wonders: you may have heard of Pablo Pineda, a Spanish man who is the first European with Down syndrome holding a University Teaching Degree; he says he ows huge parts of his development to his family who just saw and treated him as a normal child. Not too many years earlier, he would have been considered just a handicapped chap, no one would have invested any time in him, and his abilities never ever would have unfolded. In an interview he said: one person is blond, one is dark, and I have Down’s. But we’re all humans.
    * A client of mine has a son who according to the doctors never would be able to speak. She told me she feels “blessed that he choose me as his mom!”. She just believed in him and saw him as the beautiful soul that he was; with love and patience she lived with him and believed in him. He started to talk when he was 12.
    * Some of the people working with clients with special needs agree upon the following: whenever they take them as they are – without clinging to the idea that there is something to be fixed about them or that something upon them should be fought against – there seems to happen something new. New doors open. Unexpected actions, words, gestures, developments occur.
    * A man in one of the groups I’m working with decided not to fight any more, especially not “against” something. He put it that way: “What I fight, fights back. What I want to go away clings to me. So I decided to come to peace with it. I accept it yet I allow myself to dream how I would like it to be.” He explained that this led to an enormous shift – not only within himself (he gaining more inner peace) but even outside- in the patient he worked with, whom until then had seen as a person with deficits and then saw as a source of love and warmth and joy around him- which seemed to function like a magic wand.
    * A woman told me that the biggest change in her children happened when she decided to (as she put it) “wrap her children in light”, meaning that she stopped being constantly concerned but instead started to inwardly see them as happy, fulfilled, joyous beings. This somehow miraculously freed a way fort hem to actually go in that direction.
    * Finally, I liked the TED talks by Sir Ken Robinson, in the latest of which he also talks about the „epidemic of ADHS“. Very interesting facts that he cites there. Reminding me of some of the professionals’ (working with people with special needs) thesis that „autism“, ADHS and likes could be a very natural reaction in many individuals nowadays to a lifestyle and a culture of living that actually are against our nature or quite unhealthy – to put it mildly. They suggest that maybe „autism“ etc. might be a challenge for us – to change a world that forces sensitive beings to draw back into a world where they would not have to. This is a thesis that I find profoundly challenging!

    I wish you and your sons a happy happy life!
    All the best, Lisa

  11. Matthew says:

    Hi Adam,

    While looking for pictures on google of parent-child bonding, for a parent education series I will be giving at Balboa hospital and a number of other hospitals in San Diego county where I live and work, I came across your blog.

    As a provider of ABA services to children on the spectrum, and a former special ed kiddo myself (significantly delayed in reading rather then speech like your youngest) I was touched by both the content of your blog and your skills as a writer.

    I now use your blog the same way I use the http://www.wrongplanet.net website–as a way to recharge my batteries after a stressful or frustrating work day, a way to make me smile when I need it, and a real life reminder of why it is we do what we do and fight so exhaustingly hard for our kids.

    I have found that many of parents and professionals I work with also enjoy reading your blog.

    In part on their behalf, as well as my own: with your permission, I would like to feature your blog on a community resource website I am building: http://www.sdautism.com (still very heavily under construction-I just hired a professional web design team to rebuild it from the ugly hash I had thrown together with free tools).

    I look forward to reading more of your touching anecdotes and wish to thank you once again for sharing this part of your life and showing other parents out there that there IS hope and that a diagnosis does not have to mean the end of joy.

    Matthew

    • Autism Dad says:

      Hi Matthew: I am sorry it has taken me so long to respond. Your comment sort of blew me away; all your very kind comments. Thanks so much for doing what you can to promote the blog. And many thanks again for your kind comments. Also, great to hear from a local reader!

  12. Hi Adam,

    Just read your writing about visiting your son’s school and it was very touching. Its wonderful to see your initiative and to see this experience draw you closer to your son. Let me say that I understand that every child with Autism is different and that there is peace in acceptance of certain limitations with our special kids. There is a fine line that we must walk as parents between accepting and loving our kids just the way they are and continuing to challenge them and push them to be the best they can be. I also look at my 6 year old son and realize that much of the time, left to himself, his world is a happy one and I’m torn between pulling him in and letting him be at times. One thing that I don’t believe in is having a teacher or any other professional tell a parent like us what our child will “never” do. It may be that Ben doesn’t learn to count or write and that is fine if that is his limitation. However I believe that no one, NO ONE, has a crystal ball that they can look into and determine a child’s social or academic destiny, especially one who is 7 years old. Doctors can’t even predict a persons medical destiny despite all of their years of training. Only God knows what our kids are capable of. To assuredly and “professionally” take away a persons hope based on a hunch or ‘what they’ve seen before’ is a wrong of astronomical proportions. It is better to say that he “may” never do this or that but we are always working towards it and we never know until we get there. And is this the teachers explanation of an abandonment of most or all of Ben’s academic goals so they can concentrate on his “independence” so he can tie his shoes?
    Adam, I am just another Autism parent, also a teacher, also a therapist and social worker and now a lecturer, writer and parent to parent mentor. I would just like to encourage you to believe. We (adults) tend to be disabled also. In order for us to believe that a child has learned or understood something, we are dependent on the regurgitation of the material back to us and that is our shortcoming, not theirs. We (myself included) find it very difficult to presume intelligence when we are getting so little back in the way of feedback from the child. If there’s one thing I’ve learned over the years in working with children with Autism and working with my son, it’s that we may never get the feedback that we crave that they fully understand something by their actions or their language, but that usually means little or nothing.

    Love and accept our children for who they are…….Always
    Respect them as full, intelligent human beings…….Always
    Listen to professionals who want to fortune tell in either direction…..with a grain of salt
    Presume intelligence……Always
    Hope……..Never stop

    • Autism Dad says:

      Maverick Momma: this is such a well written and thoughtful and inspiring letter. I think it deserves a wider audience. May I re-publish it? Many thanks again for taking the time to express yourself. It’s a message everyone needs to hear!. Hope to hear from you again……

  13. Thought I’d throw my two cents worth into the discussion. How do I show love to my little 4 (almost 5) year old? Well firstly, if I don’t show it to him – who will? I try to model the ways in which I would like him to be able to show his love. I do know that he loves me and he certainly feels loved enough to save up all his worst behaviours for when he gets home (hah!)
    In obvious ways I have taught him to give kisses and cuddles though he is not too good at working out who should be the recipient of this affection. Each day I try to give him the one on one time that he needs with me to really relax, stop all the stimming and fill up on some happiness.
    He has learnt the language that expresses love – love you Mum or darling mummy (yes, he does say this!!) goes a long way at the end of a challenging day.
    He’s come a long way from being a touch/eye-contact avoidant baby. He is still a magical mystery tour – I never know what is going to happen next but there’s a lot of love and laughter along with the tears and fears.
    Current obsessions: ripping paper (any paper, books, boxes, documents, letters – you name it), holds and plays with a ribbon 24/7 (which is a bit better that the last few months of him obsessing over his little brothers dummy/soother on a chain)

    • Autism Dad says:

      How completely precious: “Love you Mum or darling mummy.”
      We all know our kids love us, but it’s normal to want to see some expression of it.
      Good to see you’re getting more than your share!

  14. Yes I am very lucky – it didn’t happen overnight, but it did happen!

  15. aefountain says:

    I remember the day my youngest son leaned forward to give me a kiss. He was 6 and it changed the direction of my life, along with one other major event with his older brother shortly before hand.

    Troy is now 18 and I suck up those kisses every day and treasure each and every one of them.

    When asked about our children’s emotions, I ask must we teach them. Maybe they have it right and we have it wrong.

  16. Sara says:

    Quick comment on the food situation. Colin used to live on chicken nuggets and corn dogs. He might eat green beans or corn if you promised dessert later.

    His favorite veggie now? Okra. Favorite fruit? Strawberries.
    I never would have picked out either specifically for him because of their texture – furry and seed-covered? This kid won’t even eat a piece of meat that appears to have a fleck of seasoning on it! All I did was try to offer different options at least a few times each week. I don’t reinvent the wheel at every meal, but I try to offer a new side or change up the carb (you like rice? how about couscous? Colin’s favorite is orzo – he can’t get enough!). There are still plenty of things he just flat out won’t eat, but I can usually talk him into at least *trying* everything.

    Especially if I promise dessert. :-)

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  18. Sophia Campbell says:

    Hi there… my name is Sophia. I have a child that is 5 in February, he was diagnosed about a year ago… he has been in pt and speech therapy since about 2. He is in his second year of preschool with an iep. We have tried to get help but for some reason between doctors, specialists and our county developmental delay always have been giving us the run around. We apparently make 3 dollars more an hour with my job and husbands retirement to get ssi. I had to quit my job that would not give insurance cause of Obama care, we couldn’t wait any longer, I quit so we could be Medicaid but still bring in too much money for any other help. Even though the specialists says he needs aba programs that’s about 20+ thousand a year. Which we can not afford. But now with on Medicaid he is back at his therapies, thank God. He wasn’t doing so well in all day at preschool so only going now half days, so that means very little therapies with his iep there. Then not potty trained yet so daycare said can no longer attend. Husband has bad back so can’t watch him alone for too long, so another reason to quit my job. Now we can have coverage so he can have an eeg done now that specialist has requested for awhile but had no health coverage. Going to a meeting with a county caseworker hoping he can be qualified for something. Just hoping for some help with them, already have couple thousand in medical bills from therapies. Can’t afford to pay them, thank God they still allow him to go with his Medicaid. We have been so long with all the run arounds and the little bit of help he has been improving a little but it’s better than nothing. I know there are others out there with severe autism but still about 1and1/2 years behind. It seems that he knows when he is found something not good, he will run out into the street, he will run off in a crowd, he will just drop to the ground when walking holding your hand and just about brings you to the ground with him, he is very strong. When he is around cars, he has to be in and out, opening and closing the doors and climbing all in the car. I’m ok with it when we are home but he thinks he can do it anywhere and with any car. When I tell him no he acts like he doesn’t even hear me, I can repeat it for an hour. Then when I take him by the hand to remove him, he freaks out!!! He hangs on me when we are walking about makes me fall. When I’m cooking he will push on me, I tell him to back up, doesn’t help. I find myself yelling but then I feel bad cause he doesn’t even pay attention to me, I feel like if I put him in time out that he doesn’t even know why the reason. It makes me feel horrible. Any ideas??

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