Autism Dad: “Hey Dad!”

Ryan of late has begun calling me Dad. It’s practically all the time, Dad this, Dad that, like the way some guys overuse “dude.” Hey dad, check it outDad, are we almost there? And then, as the sun falls and the sky darkens, his voice softens: Dad, are we going to cuddle tonight?

 

When Ben does speak, he prefers “Daddy.” Just before Christmas vacation, I arranged to visit Ben’s first-grade classroom for the first time, a key part of my Autism Warrior plan. Ben was sitting in his little person’s chair in a semi-circle with five other kids with disabilities. Ben couldn’t contain his excitement, blurting out:

Daddy, siffme! Daddy, siffme! 

I glanced at his special ed teacher. “Can I sit with him?” She gave me the green light, something she would later regret. I sat on the little chair, engulfing it, with Ben on my knee. It felt good to hold Ben. I handed him a yellow Starburst. “Put it in your pocket for later.” The teacher glanced at me and I smiled awkwardly; it didn’t take long for me to feel like I was back at the principal’s office. Ben, forgetting for a moment that he was in class, blurted out: “Tac-o.” The teacher was prepared with a response:

Actually, we’re having pizza for lunch today, Ben.

I chuckled to myself, recalling how I too had once mistaken the same word .To Ben I whispered: “Later. I’ll tickle you later, I promise.” It was apparent that he was feeling altogether too comfortable with me.

I was there three hours. I got a better idea of what Ben can do and what he struggles with, which, it pains me to say, is most things. His teacher gave me a copy of Ben’s IEP. She told me flat-out that Ben will never be able to count. He won’t be able to read or write. Instead, the focus is on teaching him to live independently: dressing himself, brushing his teeth, putting on his shoes. One day he might be able to live at a group home and, if he’s lucky, hold down a basic job. I was hearing this for the first time. Ben’s classroom was adorned with holiday decorations and warm cheer, but for a long moment I disappeared into a cold reality. Maybe at some level I suspected it, but no one in an official capacity had ever said it to me so plainly and directly.

Later I accompanied Ben to recess and watched him keep to himself. He was in his own world, even more so than the other kids. But he was content, at times even ecstatic. An aide commented about Ben’s nature, which is invariably sunny and serene. I understand that the goal is to pull kids with autism out of their internal worlds, so they can join our reality. But what if Ben’s world is better than our world?

At recess a surprise came when I saw Ben hop on a bike with training wheels. As he trekked across the playground, his teacher told me Ben had outgrown that bike. I’d heard nothing about this from his mother, who is not a big communicator. It was a startling revelation, alone worth the price of admission. Ben turns 7 in February; now I know what I’m getting him! Another surprise: Ben is enrolled in a basketball program for kids with autism. I can’t imagine why anyone would want to conceal this, why his mother didn’t excitedly tell me about it? It is what it is.

So these are baby steps: I know Ben’s teacher and she knows me. I am on her radar. And even though Ben may not verbalize it, he was obviously happy to see me in his classroom. I left after eating lunch with Ben. As I bid them farewell, the teacher took me aside to thank me for coming. She mentioned that she had spoken with Heather, and that my ex was happy to hear that I was visiting the classroom. It felt good to be more involved in Ben’s life, to feel essential instead of expendable. I don’t know that I felt like an Autism Warrior.

What I do know is that I felt like Dad.

###

Editor’s Note: Also at http://www.facebook.com/pages/Autism-Dad/160327080653310

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This entry was posted in January 2011 and tagged , , , , , , , , , , . Bookmark the permalink.

52 Responses to Autism Dad: “Hey Dad!”

  1. Jean Nicol says:

    I am so glad you shared this story and I am so sure that you will now have more school stories to share. Hopefully we will see many more “bike and basketball” stories because you have to believe Ben can do more. PLEASE do not believe the predictions made about Ben never being able to read, write or count. True that may not happen for him in school if that is what they believe and expect but YOU have to expect more and if it doesn’t happen you will deal with that. Kids really try to live up to our expectations; don’t set them too high but do have reasonable expectations. Start off by believing he will count to 3 and do lots of counting: count everything, especially count things he likes – ice cream cones, you, Ryan and Ben makes 3! When you add number 4 get an ice cream cone for Grandpa!
    You don’t mention how your job hunting is going but if you aren’t working and have some time do some research; read about Donna Williams in “Nobody Nowhere” and read about Temple Grandin. Both of these women were considered as children to be severly autistic and both are very accomplished women today. I taught a little boy like Ben who learned to communicate verbally, learned to read and write and had a wonderful ability with numbers that no one would ever have predicted but I believed he could do it! If you have time for more research learn about ABA therapy and the TEACCH Program. Take care. Happy New Year – I expect it will be a great year for you and your family!

  2. jess says:

    with all due respect, his teacher doesn’t know jack sh-t.

    no one – NO ONE – can tell you what your boy will be able to do. NO ONE has the right to extinguish hope. EVER.

    yes, it’s important to build life skills, but please don’t EVER let anyone in his life give up on the rest of it.

    http://rhemashope.wordpress.com/2010/08/17/writing-dreams/

    http://adiaryofamom.wordpress.com/2008/06/19/and-the-award-goes-to/

    being a warrior often means fighting those with limited imagination and pushing those who have the power to either propel our children forward or keep them in a box of their own design.

    i once had the opportunity to speak to a group of prospective neuro-psychs at MIT. i talked a LOT about perspective. i ended my lecture with a story that i wrapped up as follows ..

    It’s all about perception. You can tell me that my child has challenges but may well also have the ability to do something amazing or you can file her away under what you see as her limitations. How you choose to see the world matters. Especially when you’re the one in the lab coat.

    same goes for the teacher.

  3. Kara says:

    As a person entering the education profession and as an advocate for all exceptional children – I would NEVER make an assumption of that nature and agree with Jess – no one has the right to take hope away from you or to set limitations on what Ben can do.

    I subbed in a mod/severe class where the aide told a student they couldn’t go to college and I told the aide she was wrong and made her apologize to the student. AGAIN – no one can ever take hope away and I would question this teacher about how she came to this determination.

    Ben is lucky to have you as his father.

    – Happy New Year!

    • Autism Dad says:

      Jean, Jess and Kara: Just wanted to thank each of you and all of you for taking the time to post your comments. They are extremely helpful and motivating. I am really surprised, given all the attention that autism receives in the media, that a teacher would be so unenlightened in her comments. What kind of professional development are these teachers receiving? And of course it makes us appreciate the really good teachers that much more — those who challenge the students with high expectations and truly believe in the potential of every student. Happy New Year and many thanks again……

  4. Shivon says:

    Oh Adam,
    That must have been tough to hear and person who said it obviously had no idea what the hell she was talking about. Be sure to read the links that Jess posted above….amazing stories of progress despite being told it wasn’t possible. I have had a lot of ‘experts’ tell me a lot of things that just turned out ot be completely the opposite. You are the expert as you get to learn more about your son. You are his father

  5. shelbyisrad says:

    I found your blog from it being freshly pressed… I am intrigued by your adventure and looking forward to following it.

  6. Richmond says:

    It’s great that you are embracing your child’s special condition. my sister used to teach in a preschool and she notice that one of her students have autism, apparently the parents, who are really rich, won’t accept their child’s condition and insist on their child to go to an ordinary school.

    • Autism Dad says:

      It’s true, the acceptance piece is probably one of the toughest things to do as a parent. But in the end, it’s good to accept reality and then focus your energy on trying to give your child every opportunity to live a full and happy life.

  7. Suzi says:

    Found you on freshly pressed….what you really are is a Warrior Dad, and your son couldn’t be more blessed to have you fighting for him! Keep up the good fight!

    suzi

  8. Autism Dad says:

    Hi Suzi: What a beautiful thing to say! I really appreciate all of your encouragement. Regards……..

  9. Sheryl Stark says:

    Congrats on being freshly pressed. You are an amazing Dad…stay strong and keep loving life.

  10. I hope that bringing a smile to Ben’s face brings one to yours too, that is important!

  11. Minka says:

    I would have to agree with the other comment up there… teachers don’t know everything. Times are a changin and we are learning more and more about Autism and how to help children with Autism. There are so many avenues to take, gluten free diets, music therapy, sensory therapy…the list goes on and on. Might take some time to find out what works for your little guy but there are options and always hope. Always have hope. Sounds like a good trip to the school. The bikes were a huge hit at the camp we go to. the boys would love to race around in their big trikes.
    Reading your post the other day has really got me inspired again it inspired my most recent blog post.
    Thank you for sharing.

    • Autism Dad says:

      I know Minka, I also was surprised, given how much exposure autism receives in the media, that the teacher wasn’t more enlightened in terms of her vision for my son and her choice of words. I understand she doesn’t want me to have false hope, but don’t take ALL of my hope away. But don’t worry, I’m not going to give her that power over me 🙂

      • ASDMom says:

        Why would you allow that to stand there like that? If the teacher is so incompetent she can’t teach your child to count, you need a change right away. Your child WON’T count if you don’t stand up and advocate for your child. IMMEDIATELY. Every moment you waste letting people railroad you like that is a moment stolen from your child. A “warrior” wouldnt lay down and die like that. Your kid needs you to advocate for him.

      • Autism Dad says:

        Thanks for your comment ASD Mom! I have Ben’s IEP tomorrow and will definitely be more forceful in my advocacy!!

  12. cassiejean says:

    Wow. Your story makes me want to cry. I can definitely relate… And having worked with kids on the very severe end of the spectrum, I say, Be proud of what your son can do. I know I felt proud just to read it 🙂

    • Autism Dad says:

      Cassie: Thanks for your kind words. I am glad to have a new reader and happy that my words connect with you. I hope you subscribe so you can read more! Regards and thanks again!

  13. Its not your ex the”non commucators” job to tell you things your not divorced from your son… its shocking he calls you dad… be involved in your sons life, everday, get you own reports… teach him to count v-tech and smart cycle games will also teach color shapes and promote talking. Educate your educator! Put ur diffrences aside and get on the same page. Your sons suffers from a bad relationship as well and if you don’t think your ex is doing a good job file for custody… you are letting your son be label and get lost in the system … ps dad is a word you need to earn

  14. Cyndi says:

    If the Fossey center can teach primates to read, count and engage in reciprocal communication that uses complex sentences – surely our education system can figure out how to accomplish these same things with our children. Incidentially the center has also taught bonobos approximate spoken language and dogs to use a modified version of the pecs system to communicate with humans. I would highly recommend that you and your ex wife hire a special education advocate to review your son’s iep and determine whether or not your son is bring short changed against his potential. The teacher’s comment is a dead give away of the iep team’s overall stance. Look for an advocate who is a coppa member. You will be amazed at what that person will tell you.

  15. Jessica S says:

    This was a beautiful post; thank you for sharing it with us. You are a very talented writer, too. Have you ever thought about writing a book about some of your experiences? I would imagine it would be a joy to read and extremely helpful to many people. Just something to keep in mind. 🙂

    Keep at it,
    Jessica

  16. I agree with all the other people commenting here- do NOT believe what the teacher was telling you. I work in a school (not a special needs school, but a boys school- we have 1400 boys – so not a dull work day then…ever…lol. ) and there is a study about boys and their learning that shows boys will only strive to achieve to the level you set for them. Set the bar at 50% and they’ll achieve 50% (girls are different in this regard and more independent minded- they will go the whole distance on their own). Yes, Ben has special challenges but do not EVER let anyone expect anything less of him- if he struggles with counting now… does not mean he won’t EVER learn to count etc. I am aghast at the attitude of that “teacher”. On a side note- have you seen Autism The Musical? http://www.autismthemusical.com
    Inspirational and a beautiful film. Had me in tears in the end. And that teacher would probably benefit from viewing it too…. ;o)

    • Autism Dad says:

      Thank you Krista for leaving such an insightful comment. I will definitely take your advice! Thank you again. And yes, I did see the movie…it is incredible!!! Stay in touch okay and I’m really enjoying your blog!

  17. Asian Dyna says:

    What a heartwarming story! Many thanks for sharing.
    🙂

  18. Keep hope, my friend. All children are special miracles, and their potential cannot be capped or predicted by anyone. That’s part of the joy of watching them grow! Keep being a warrior and fighting the good fight. Cherish every victory, large and small. You already know how blessed you are to have your sons, but someday I have hope they will realize how blessed they are to have you!

  19. You’re one of the best daddies in the world! 😉

  20. Neeks says:

    Unless that teacher is a licensed professional doctor she has only one thing: an unqualified opinion. I have one too: she should be ashamed of herself! What she did was rude, unkind and unprofessional.
    You should speak to her boss. If she’s telling you his limits, then SHE is stopping at them too and won’t keep trying to teach him. She will just keep proving her own point.

    • Autism Dad says:

      Exactly! The law of low expectations…and kids pick up on that! It seemed exactly the wrong message to send to a parent. Still praying Ben will one day experience some real gains in his verbal skills and social development, but I take comfort in knowing that he is a happy, sweet-smiling little boy.

  21. Neeks says:

    Oh and BRAVO for getting more involved in your children’s lives. I saw the responses berating you for not knowing certain facts, that you would know these things if you were more involved…Hey people…give him a chance. He IS getting more involved, that’s WHY he found these things out. Keep going Sir, to know ~ to really know an autistic child, is to know pure love.

    • Autism Dad says:

      Hey, I appreciate the support; nice to have you in my corner 🙂 Yep, I am definitely a work in progress as a dad, but getting better every day.

      Here’s to pure love!

  22. Jen Stevens says:

    Please know that your son’s teacher is mistaken about what he can and can’t learn. I have taught special ed students with autism in grades K-5. I have taught non-verbal 10 year olds to recognize and write numbers 0-100. The same child learned to count objects and write the corresponding numerals validating his comprehension of quantity. He also learned to add, subtract, count money, and tell time. I am fairly certain this would have been learned much earlier in his life, but no one thought he could. Avoidance was a big part of his lack of progress, once we got past it, he learned skills quickly.
    I’m very concerned to hear a teacher give up on a 7 year old so quickly. She sounds negative and lazy. Possibly not knowledgable enough to reach your son and his unique learning style. I have never in 7 years working with this population met a kid that couldn’t learn to count!

    • Autism Dad says:

      Hey Jen: I am going to share your email with my ex and discuss it with her. For you to say that you have NEVER met a kid within this population that couldn’t learn to count…well, that sort of woke me up! Many thanks for reading…and for caring!!!!

  23. Mandz says:

    Our son’s sound very alike!! I too had a teacher at Theo’s first school that I felt had too negative an attitude towards him. I was always being told, “he’s defiant”, “he knows what he’s doing and he’s doing it to get his own way because that’s what you let him do” so on and so forth. His teacher didn’t have a good understanding of Autism however this is where the local authority thought that he would be best placed.

    I felt as if I was banging my head against a brick wall, the teacher was always giving me all those negatives but she would never listen to me. I knew his coping strategies, I knew some of the things that pushed him so far out of his little world he was out of his comfort zone which led to self harming and harming others. Theo doesn’t feel pain, he’s understanding of danger, even now there has to be someone looking after him all day until bedtime.

    He spent a year and a half in the preschool nursery that was within that school and then went into the mainstream primary school there with a learning centre facility for him to break away from mainstream as need be. It was the Head Teacher of the LC that was the one that didn’t listen, had no hope for him progressing, it was a fight to get her to listen to myself or any of the health professionals that were there to support him through his educational needs.

    Negative negative negative – The worst line that she gave me was “Because of your lack of parenting skills, the boy doesn’t understand how to learn”, completely dismissing his diagnosis of Childhood Autism and his Educational Learning Plan.

    A year and a half out of primary my partner and I relocated to Washington, England. Theo’s diagnosis and ELP both proved that he was in need of specialist education and he was placed into this school – http://www.sunderlandschools.org/columbiagrange/index.htm

    His progression in language, life skills, social situations, learning – because the teachers understand ASD and have all the health professionals in school, because they believe in the child – they give that child the best chances in them learning and progressing. If they can’t get the child to learn something one way – they’ll brainstorm with anyone that may be able to help – home, health therapists, teaching staff, music therapists and they’ll tailor it towards the children that way rather than come to us and say “he won’t do it”, they’ll do everything within their means to give the child the life skills that he or she might need to be outside education.

    I’ll end by saying at the school in Dumfries I was told that Theo would never be able to cope with situations where there is people that are strangers to him, this situation will always intimidate him. Within six weeks of him starting at Columbia Grange School, he performed in his first ever Christmas play with a Gym Hall full of other pupils parents watching them on stage.

    6 weeks of people believing in him – and not looking for “he won’t be able to ever do this”.

    His progress has been amazing – I have to say – It’s the school that’s enabled him to believe in himself and let his boundaries down to come out of “his world” to learn about what we see in ours.

    • Autism Dad says:

      Mandz, what an inspiring letter! We will not give up on our little Benny, just as you have persisted in your commitment and devotion to your Theo — and with such amazing results. Whether we’re talking about kids with autism or kids without autism, one thing remains constant: a caring, committed teacher can make a world of difference.

      By the way, when I was a boy, my family spent over a year living in the English countryside. We lived in a small town outside of Oxford called North Lee. This was the early ‘1970s. We love England!

      Many thanks again for your wonderful letter. Thanks for sharing!

      • mandzmagee says:

        Can you believe that I’ve only just seen your reply to this?! You’re so welcome I was completely inspired by yours and just had to share the similarities!! I’ve been to North Lee Believe it or not lol!! I had a friend that moved there and I’m very ashamed to say that I’d only been to visit her once in the 4 years she was there!! Xx

      • Autism Dad says:

        North Lee, wow! I was maybe 6 at the time. Lived there for a year-and-a-half. Parents loved being there — happiest time in their marriage. Thank you!!!!!

  24. rolaaus says:

    Sounds to me like your wife is exhibiting Divorce Driven Malicious Parent Syndrome – I am, of course, assuming you two are no longer together. My wife went so far as to refuse me the use of our car seats to take the children for the weekend – simply because there was no court order ordering her to (not that she is following the court orders in any other respect anyways). Maybe your wife/ex isn’t as bad as mine is being, but it’s something to watch out for and be aware of. I submitted papers to the court before this happened requesting a modification to the order, but since the children weren’t in any danger, it has to wait until next month, in the meantime, I can’t see my kids (I have no income and my wife knows this, but I’m actually getting 2 new free car seats from CA Highway Patrol! through a friend of mine at church).
    I commend you for being involved with your children. I have been homeless since our separation and only now have the means to get more involved (a registered/insured vehicle, and a home) and since getting more involved have actually learned my Autistic son only has a 56% attendance rate at school! Needless to say, I’m going back to the courts this week and re-apply for an emergency hearing for abuse (DDMPS – see above), and neglect (school attendence and other concerns), so hopefully I’ll have them by the end of this week – and have them all to my self, considering she has in no way shown she is willing to cooperate with the existing shared custody arrangement.
    I’ve subscribed and will be reading your earlier posts. I have 3 other blogs going – though I don’t post on a regular basis, I think I’m going to create yet another new one for these Autistic issues that I run into.

    • Autism Dad says:

      Thanks for supporting the blog and for all your kind words. I’m about to go check your blog (s) as well. It sounds like you’ve been to hell and back, and I can only hope things get better for you. Yes, my ex did act strangely, and seemed intent on wanting to control the boys and limit their time with me, which I could never understand. But we’re on much better terms now, thank God!!

  25. Beautiful piece. I’m a therapist and my practice focuses in ASD. i believe my clients and their families would benefit greatly from this perspective. Thanks and keep writing.
    – Anthony (spectrumshare.com).

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