Going Through the Motions

cupcakeavatarMany years ago, a friend mentioned a therapy called Son-Rise. We were still new to the world of autism, but had a few years experience under our belts. We looked into it but at that time, I couldn’t bear the idea of ‘joining’ our son in his stims or “isms” as they are called by Son-Rise. I pushed Son-Rise out of my mind at the time, not knowing that one day, I would end up in Sheffield, Massachusetts at a Start-Up program. We focused on ABA, because that is what all the professionals pushed on us. We did intensive ABA for two years with no improvements. What we gained from it was a rigid, routine-obsessed little terrorist. Joining in some of those new behaviors would have terrified me, so it was ignored. We focused on extinguishing the behaviors and sometimes removing them by force as demonstrated by our son’s therapists. The act of extinguishing the behavior goes against everything Son-Rise stands for.

Son-Rise teaches you that our children’s potential is limitless. I think it is safe to say that they flip the bird to anyone that says otherwise. We didn’t get this from ABA. ABA taught us to force our child to conform and from that, our son began to resist. Wait, that doesn’t do it justice…our son REVOLTED! He has stood steadfast, resisting anything we do with him as a result. He went from a laid- back, go-with-the-flow kind of kid to an oppositional, defiant boy that typically wants nothing to do with his parents and brother. Son-Rise has a “deep acceptance of and respect for our children” and their stims. ABA wants to squash the behaviors like a bug, only adding frustration, anxiety and more stimming. That has been our personal experience. So at this week-long seminar, I really had to take a step back and try to undo everything I had learned for the last eight years. I wasn’t sure I was going to be able to do that. We learned about love and acceptance, and what I liked most about the view of acceptance, is that we are accepting our children and their autism, with the express purpose of pulling them out of it and leaving autism behind. For good. Initially when I was told that I would be learning to accept my son’s autism, I wasn’t really sure I was cut out for that, but the more I learned from the staff and volunteers, the more I understood that we were all there to kick autism to the curb. We were just approaching it from the inside out, rather than trying to knock the house down to get our child out.

cupcake and friend

I was really pleased to see that Son-Rise supports biomedical interventions, diet, sensory integration and auditory integration therapies. I felt at home with that and was happy to see how open and receptive families were to it. I was a bit overwhelmed at first because so many families came to me for help and information on how to get started. It really made me realize how long we’ve been doing this and how many different approaches we’ve taken with our son. I was more than happy to talk and even more eager to help. If only I could have had access to the internet and my computer…I could have thrown so much more information at them! While talking to one couple about what we’ve tried, what had worked and what didn’t, I realized at that moment that our son is so much further along than I credit him for. I know, I know. I always say it, but I didn’t truly mean it or feel it. Talk about a wake-up call. While talking to them, an image of a chart appeared in my head of all the things we’ve done and tried and whether it was successful or not. I promised myself that once I got home, I would actually make that chart and review it.

cupcake intervention chart

Once reviewed, I had lots of things that failed, but I also had more things that ended up being a success than I had realized. That is when I realized that I always choose to focus, not necessarily on the negative, but on what we still needed to achieve. I should have been spending more time celebrating what we’ve done, where we’ve gone and that would have allowed me to see how close we are to the finish line. I was telling some of my TMR friends that I finally feel that we’re so close, that our son could probably piss over the finish line! All this time of choosing to focus on where we still had to go, I didn’t stop and enjoy where we were, at that moment. I learned, with the help of some friends and the Start-Up, that I can choose to be happy with everything. Why sweat the small stuff right? I honestly can’t understand why I have been freaking out about stuff that is honestly out of my control. So the kids dropped a glass of juice…big deal! I can and will choose to be happy from now on. That is what I kept in the back of my head when creating the spreadsheet of all the therapies we’ve done over the years. I believe it really helped me reflect on what did and didn’t work. Had I not had that frame of mind, I think that chart would have ended up looking very different.

I can finally celebrate the things that worked the most for us, like chiropractics allowing our son to finally feel the sensation of urine sitting in his bladder, stool moving through the colon toward the rectum and giving him the opportunity to then realize that is why we were bringing him to the toilet all those years. Dr. Usman’s biofilm protocol allowing his gut to heal so he no longer had chronic diarrhea. Dr. Yasko’s protocol is what brought us language, and then homeopathy brought him to say, “I love you, Mom.” I’ve celebrated these things in my head, but never in my heart. I probably did it to protect myself, never knowing if it was going to last or ever happen again. Now I know that it will, and that is because I’ve changed the way I think. After I was home, I went to the playroom with our son and started using the techniques I learned. What happened next was nothing short of a miracle. We bonded through acceptance — something that was repeated over and over again throughout the week. I always complain about how my son and I never bonded, not even when he was an infant. There was never a connection…until now.

Photo credit: Cultura/Peter Purple

Photo credit: Cultura/Peter Purple

The list of attempted therapies and protocols that appear to have done nothing but drain our bank account were still worthwhile. Had we not done them and given them a chance to be the ‘magic bullet,’ then we would have always wondered, “what if.” We thought for sure that Methyl B12 shots were going to give us vast improvements, but it did not. One family started cod liver oil and immediately gained language. We only noticed fishy smelling burps. Other families swear by hyperbarics and that it increases language, attention, helps heal the gut and many other things. This may be true; however, that wasn’t the case for our family. PECS, or Picture Exchange Communication System, brings language to some kids, but it didn’t help our son. Sign Language did more for our son’s communication than a bunch of little picture cards. What works for one child obviously won’t work for another, and the reverse is also true. The Yasko protocol was HUGE for our child, but I know families that hated it and saw no benefits to doing it. Chiropractics is another thing I recommend to many families, but not all see any benefits from it like we do, and that’s ok. What matters is that we are heart-and-soul invested in our kids. We also have to choose to be happy with the little things. Otherwise, we lose perspective, like I did up until recently. I had no idea how close we are to the finish line and because of that, I have that fire roaring inside me to make it over the line.

I shared these thoughts with one of our current ABA therapists. She is an amazing woman whose main goal and purpose in life is to help our kids. She’s still a college student and aspires to open her own clinic using various modalities. I thought that she may find this interesting and even though it wasn’t recommended by Son-Rise staff, I felt that she was a perfect person to share this knowledge with. I shared with her my experience with joining my boy in his stims (isms) and how he kept looking at me with a thoughtful expression. This happened over and over again. I would thank him for looking at me, for being interested in me and what I was doing, all the while, he would look at me as if I were alien to him. I kept following what he was doing and listening to him giggle to himself when I wasn’t able to make the right sound effects.


He had never laughed at me before like that. He was totally engaged, even though we were basically doing parallel play. After a bit, he looked at me and made the sounds again and told me to practice. Really??? He eventually gave up trying to get me to do the noises right and went right back to playing with his Angry Birds figures. I went right back to copying him. After a few minutes, I realized that he was staring at me again. So, I looked back, thanked him for looking at my eyes and just looked back at him. He gave me a gentle smile before leaning in to kiss me. This was the first time his leaning toward me for a kiss seemed so connected. It is hard to explain, but in the past, it was more like he was going through the motions, whereas this time, he really seemed engaged. After giving me a kiss, he looked at me and smiled again. I was about to say something when he then said, “Thank you for playing with me, Mom”. My heart skipped a beat and there was a lump in my throat. I thanked him right back for allowing me to play with him. The difference this time from every other time I played with him was that he was far more engaging than he’s ever been with me. It usually feels like he is just going through the motions — going step-by-step like he had been taught, like following some choreography. This time was so different, and he felt totally present with me. I’m sure he was thinking the same thing of me! Our therapist tried the same thing and was just floored at how well it worked! She experienced the same connection as I had the day before. What a wonderful experience for all of us. Stress levels were down, no one was making him mad or upset for stimming on his Angry Birds…we were all having fun and connecting.

A couple of days later, I caught my boys actually playing together. Most of the time, it is my youngest trying to force his brother to play with him and that usually resulted in him getting smacked. Apparently, the little one had been observing me because I caught him joining his brother in his verbal stims and they were both interacting together.

I just had to run and get the camera and get it on tape. I don’t know anyone that would have believed me had I told them. So here was my proof! I’m so happy we found something so promising… if not to pull our son out of his autism, to at least finally give our youngest the relationship he’s been craving from his brother.

I am forever grateful for the week long break away from home, for cupcake and friends 2the new friendships made, and for learning how to accept my son, which has enabled us to develop a bond. I am accepting him whether that includes his autism and vaccine injury or not, I don’t care anymore. What is important to me is that he truly knows that I accept him. I learned how to let go of things I do not have control over, like the fact that I made a rotten choice to have him vaccinated while on antibiotics. I FUBAR’d that one, but I can’t change that. What’s done is done and I’m moving on. I’ve learned to pick my battles more swiftly but also with more strategy. Our son’s story mirrors the story of Raun Kaufman, the boy who’s parents founded Son-Rise. http://www.autismtreatmentcenter.org/contents/other_sections/son-rise-program.php We were told to give up on him and that our son was hopeless. We were given a list of hammer glass celingthings he’d never do, and we’ve proven each one wrong. I know he is recoverable, I’ve seen him come this far without a bond between us. Imagine the potential when we do develop that strong bond we’ve been missing the past 10 years. The finish line is in sight, and I can see him running right over it, focused on where he wants to be in life. Just when I began to think there was a glass ceiling, someone handed me a hammer.


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10 Responses to Going Through the Motions

  1. Tina says:

    Hi Cupcake,
    You mentioned your current ABA therapist. Does this mean that you are doing Son-Rise and ABA simultaneously? We have been doing ABA with our 3 year old for almost a year now, and he has made a little progress but still doesn’t speak at all. I was torn whether to do Son-Rise or ABA. I ultimately did ABA because I knew 2 people who have fully recovered their kiddos using it (along with a whole lot of biomedical). After a year of ABA, I worry that I made the wrong choice…. But I’m also afraid to start new. I’m wondering if I can use the Son-Rise techniques but still have him work with his ABA therapists.
    Thanks for sharing what has and has not worked for you. I love this site!

    • Sean Connery says:

      OK the way to do that is to demand your ABA therapists to work the methods into the ABA goals as a synergy. You will find that the ABA goes much better. Take it from me I am a BCBA

  2. Patty Mezzo says:

    Woohoo!!!!! Another Son- rise Mommy!
    I was in your shoes 2 years ago this week!
    Congratulations and welcome to the best thing EVER for your son! Get on some of the FB groups. They rock

  3. AmyinIdaho says:

    It’s always great to share in breakthroughs – so happy for you! Can you describe a little for me the difference as you have experienced it between Son-Rise and Floortime? We have been doing floortime for about a year (which I love – particularly over ABA/DTT) but I’ve always wondered what the difference is between the two. Thanks!

  4. Cheryl says:

    Thrilled to see they now support something other than just using Option. When I went, to the third start-up class, if anyone ask about foods, hippotherapy, ect., we were told, “That not Option, we teach acceptance, not other ideas.” We were highly discouraged from doing anything or talking to each other about other ideas. Back then biomed was unheard of and we were all still trying to understand why our children had changed. Also we were told to keep the child in the room and not go outside no matter what until they were better. After 6 months in the room and no progress for John, I got a cold reply from my expensive call up there for help. I was told John was not making progress becuase of me, that I was giving off the attitude that I was mad or sad or some other unexceptionable means and I was keeping him autistic. Weeks later one of the staff I had worked closely with called me as he had left Option and offered to help with John in a different more productive means telling me I had other choices and needed to look into them….Bottom line, my son was sick, he was poisoned and no amount to keeping him in a special built room no matter how accepting my actions…was going to change that. Yes 16 years later I am still angry for being told John’s autims was my fault….Parents of today are so blessed you don’t live with the you caused it, something you did made him pull away from you that we got 20 years ago. You have biomed at you finger tips today…..Is Option a good idea, naturally, it’s how we should treat all our children, disabled or not. Do you have to spend thousands learning it…no…open you heart and see the joy and positive in your child and go from there. Do you have to stay in that room until you child can cope with life, well how will you know if you child can cope if you never come out of that room…Like all things, use what works for you…toss the rest. I am thankful someone got me out of the room before another month went by and told me I was not to blame for John’s lack of progress. How is he today at 20, no longer autistic, but still physically disabled from vaccines. He is a happy guy with a good life…

    • Cupcake TMR says:

      Cheryl, thanks for sharing your story. I am sorry your experience was a negative one. They clearly changed their thinking and I think a lot of that has to do with Bryn and William doing biomed with their adopted daughter Jade. GFCF diet was brought up numerous times throughout the week. I’m just sad you didn’t find the help and support they offer now. May I ask what DID help recover your son? Was there any one particular thing that really helped in recovering him? I’m sure many of our readers would find it helpful. <3 Cupcake

      • Cheryl says:

        Thank you, I still say if you are a parent who has not reached the place of coping with having a disabled child, go you need a break, but be careful if you think you are going to learn hands on ways to work, you will not. It’s all attitude, you can either do it on your own, or not. ( do they still take two afternoons to ask you to donate more money and bring in people to try and get you to give? That really insulted me, I put that trip on a Visa, I couldn’t pay my mortgage, and you stand here and tell me how broke this place is and how you need my last dollar while selling $75.00 massage, when we would all like a free one?) As for going to Option, I actually had been a “fan” of the theory from 1977 on when I wrote my first autism paper and featured two sides, one Son-Rise and A Child Called Noah. My WORD who wouldn’t have wanted the out come Raun had over Noah! But reality is reality, Noah was a sick child, I can see that now after going back and reading his stories again. Another adult aspie proposed to me that Raun was an extreme aspie who responded the way he did becuase he was not sick. Hum. My BIL now48 is an extreme aspie and his babyhood was a lot like Raun’s, hard call.
        ANYWAY what worked best of all CHELATION!! And we started back in the day when there was no protocol..it was all still trial and error. Still with this start and stop, change products, try this form, it still rocked our world. John looked up for the first time in years. He went into a public restroom at the age of 8 and stripped for the first time in his life peeded in a toilet!! Nobody had to tell him or show him, he just woke up and bingo potty trained. Our best chelation product to date, using clay. Those clay baths you hear about and dismiss, changed my son in one jar. Second best up until that point was Hearing Retraining, or AIT stopped his self abuse. Nothing else happened, but he stopped beating himself.
        I am a big fan of Glenn Doman, though his place is for any brain issue, I got the most hands on help and answers there. One, because John was fully disabled, not just autistic, I need real help learning how to over come strokes, help him open and close his hands, crawl, so many things. Also while there I met my first recovered autistic child. He came and did a talk about what it was like to be “locked in there” At the time he was in the 5th grade and an honor student. He blew me away. His Mom was who helped me go gfcf and other interventions that had helped her son. The Institutes for the Achievement of the Human Potential gets low marks on the list of autism help, but for us, it was right at the top. ( Funny it was mentioned in Noah’s books) Not only did they NOT ask for money while we were there, the helped me get the flight to Penn. free and called me once a month to ask me if I needed any help. WOW! I never once got a call asking for money, just how can we help you help John. That meant so much.

        Like you I have a huge list, some worked, some did nothing. Some did nothing at the time and worked years later. Go figure. John lost his dx of autism by the age of 17. Two different Md’s in different states ruled him no longer autistic, but his physical issues remain. Add to it in his later years he has developed a sever seizure issue. He never got his speech back, but he got back comprehension, and has a normal level of intelligence and understanding. He sadly lost being potty trained after 12 wonderful dry years….he has a bladder issue related to vaccine damage…common in young men his age.

        Thanks for hearing my side and keeping an open mind…but then again open minded is what it’s all about if we want to share and help our very precious children. 🙂

  5. My husband and I spent one weekend there when our daughter was three. We were just starting out on this journey and it was HUGE that we went there first. That weekend set the tone for how we would approach our daughter’s autism. Seeing Ron Kaufman speak, gave us so much hope. Learning to join our child where she was, while reaching for more, was so important. We had been so busy trying to help/cure her that we weren’t really connecting with her. Son Rise teaches true connection. I think RDI does too.

    I will say that sometimes at my worst moments, I thought it was all full of shit. How can I be happy when my child is in pain? How can I be happy when she is screaming?
    I learned through metaphysical teachings that sometimes it’s too big a leap to go from that, to happy, but you can reach for a thought that feels a tiny bit better and then another one and take incremental steps to get there. And it’s a lifelong process. Happy isn’t a done deal. As long as your are human, you’re going to go back and forth.

    I love your chart, and I love the idea of celebrating what has worked rather than lamenting what didn’t (and how much $$ it cost…I could make myself miserable over that one for years). We’ve done tons of biomed, TONS. Our kid was a great responder to MB12 and also to Berard Auditory Integration Therapy and has benefitted from a lot of other modalities as well.

    And sometimes it’s just a lot of work. My heart goes out to anyone who finds themselves on this unexpected path.

  6. Diana Gonzales says:

    I ♥ this. I also believe that acceptance and fighting are not mutually exclusive. Thanx for the dose of hope as I have been struggling lately with what I can’t afford to do instead of celebrating the gains from what I have done so far. Loved the video and eating broccoli? That was STELLAR! I can’t stop thinking about it and have put that on my mental goal list!

    • Cupcake TMR says:

      Thanks for commenting about the broccoli. He’s a little gun shy from all the gagging, but I know he’s going to eat more vegetables in the near future. He looks at them more now than ever. Like Walt Disney always said, “Keep moving forward” <3

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