1 month update on neurodevelopmental program for ds12

(Not ds12)

(Not ds)

Five weeks ago, I told you that we were preparing to begin a neurodevelopmental program for ds12 and that I’d update you with our progress at the time of our first follow up after four months.

It obviously hasn’t been four months but I’m so amazed and delighted with the changes we’ve seen in the short time since we began that I have to share!

First, a little bit about our neurodevelopmental program.  Our program for ds12 is two hours a day; an hour of this is comprised of two half-hour activities.  The remaining hour is mostly made up of activities of very short duration (2 -3) minutes that are supposed to be done 2 – 3 times a day.  That might not sound like so much but after a month, I’m still not doing everything with him daily.  I’m happy at this point to get to almost all of the activities once a day.

What’s amazing is the kind of changes we’re seeing even though we’re not fully following the program and it took two weeks until we were even doing half the daily activities.  This fits in with the unofficial theme of the week, how you don’t have to be perfect to see good results from your efforts.  :)

To recap about why we decided to do a neurodevelopmental program: ds12 was very emotionally reactive, with poor social skills and self-image.  We give him a lot of time, love, patience – but it wasn’t enough.  It was clear to me that we were missing a piece in the puzzle – I felt like there was some part of his that needed to be rewired.

That’s what ND work does – it rewires your child’s brain.  And it turned out, that is what he needed – to strengthen connections to particular parts of his brain that were weak.

When we began, he was cautiously willing to do the activities but quickly felt discouraged because everything was a challenge.  He was quite resistant  and initially we really had to push him to do the activities.

I emailed our ND therapist to ask if it was normal for behavior to get much worse, because his behavior about two weeks after we began got horrible, much worse than I had ever seen.  Really over the top.  Screaming, crying, extreme emotional overreactions.  All day long.

She said it was normal.  His reaction reminded me of cleaning out the basement, how you have to pull out all the junk before you can thoroughly reorganize – it gets much messier before it starts to look better.  This was the same thing.  Seeing this behavior made dh and I both feel even more committed to sticking out this process.

Now we’re a month in and I.can.not.believe.the difference.  I didn’t expect to see noticeable results for a few months and definitely not until we had consistently been doing the full program for a while.  I didn’t expect that the small things that we did with him could have such huge results so soon.

He is so much happier.

He used to constantly tell me he had the most annoying siblings in the world and get very frustrated with his younger brothers and do passive aggressive things to them (trip them when they walked by, pinch them when he thought I wasn’t looking, eg).  They often told me how mean he was to them and didn’t enjoy spending time with him.

Three weeks into our ND program, I noticed he was playing Monopoly every day with ds6 and they were both having a great time.  Every day.  He never played like this with ds6 before.  He began spending two hours every afternoon doing activities with ds8.  (He walked in while I was writing this and asked me what I’m writing about.  I said, about his ND program and asked him if he sees any changes in himself.  No, he said, but his younger brothers aren’t so annoying anymore. :))  Ds15 and dd13 have started walking with him in the evenings, the three of them doing some program activities together as a group.

He is much more cheerful, helpful and calm.  I came home a couple of days from a morning appointment, and he asked me if I had eaten yet and when he heard I hadn’t, offered to make me a meal.  He now usually handles disappointments gracefully rather than exploding.  I can almost see his self-esteem growing in front of my eyes.  He now smiles often and usually is in a good or neutral mood.

His auditory processing has already jumped from 5 – 6.  I wrote about the importance of auditory processing – this seemingly minor improvement is HUGE (go read the post that I linked if you haven’t so you can understand why all of this is connected).  His visual processing has also jumped a digit.

His physical stamina is building, his gait when he walks has improved.

Edited to add this tidbit because I had to share! – On Shabbos our family enjoys singing together but ds12 had always refused to join in despite our encouragement to participate.  This Shabbos he voluntarily joined our family in singing zemiros (Shabbos songs), as naturally as if this was something he had been doing for years.  Dh leaned over to me to be sure I noticed but whispered not to comment or draw attention to him.  I noticed the moment I heard his voice ring out and wouldn’t have missed it in any case, but a moment later from the other side of the table, dd17 looked at me, raised her eyebrows significantly in the direction of ds12 and subtly pointed to him to singing.  It was beautiful.

It’s pretty incredible to see this taking place. I’m so encouraged to have found a way to help him at the core level and I love seeing the remarkable young man I knew was in there emerge.  I’m looking forward to seeing what happens over the coming months!

Avivah

21 thoughts on “1 month update on neurodevelopmental program for ds12

  1. BH. I’m so happy to hear that things are improving.
    I’m emailing this article who is having a similar situation with her son.
    Good Shabbos Avivah!

  2. Would you be able to give information/resources on where to look for someone to help with a similar situation? My son is younger than yours, but exhibits a few of the same behaviors as your son (especially the passive aggressive behavior to siblings and emotional outbursts) and I would love to help him, but as of now I am lost. Thanks for sharing your stories!

    1. Rivki, in the comments section of the post on auditory processing that I linked to above, I listed several organizations that take this approach. Reading at those sites will begin to give you an idea of what it is, how it works, etc.

  3. Hi! I’m Naomi’s friend to whom she fwded this post. We’re also having passive aggressive behavior and long emotional outbursts (age 9). I also do not suspect auditory processing. Can we have more details?

    1. Hi, Rafaella, welcome! Did you read the link above to my post on auditory processing? That will answer some questions.

      At this point I’ve come to think that most people are weak in auditory processing due to the nature of our very visual lives. There are a number of pieces to improving this – we have a list of different activities to strengthen his processing as well as the pons level of the brain that is connected to emotion and self-control. Specifically what your child needs will depend on the root of where the behavior is coming from.

      I’ll try to write up a post with some links for more information.

  4. I just wanted to share with you how it sounds like we’ve had similar successes — I have a son with ADHD that was previously on the max dose of Meds and two booster doses and still having behavioral issues; well, 3 mos later, with 2x/week neurofeedback sessions and we’re medication free!!!! This is huge. He previously could never sit at the shabbos table for long enough for kiddush without fidgeting, jumping around, etc. Forget the rest if the meal … It escalated from there. Happy to report that he stays throughout the meal AND contributes appropriately, allows others time and space. Nothing short of miraculous. I would encourage ppl to look into neurofeedback in the states, but beware that not all therapy is equal. The therapists should have specialized training (at least 2 years), and be able to sit there the entire time to adjust as necessary. So happy to see you’ve also had success with this therapy

  5. I’m not really clear on the differences between neuro-developmental therapy, neuro feedback, and sensory integration work (or is that totally unrelated?). Are there others? How do you determine what’s right for your situation? How do you provide these affordably? Will insurance cover any?
    Thanks to anyone who can comment.

    1. Sharon, neurofeedback is something totally different but one reader commented that she had success with it.

      Sensory integration work is part of neurodevelopmental work but there is more involved than this. There is an audioseminar at the site of our therapist that explains a bit more about the process – http://senc.us/14.html. There is a long track record of success with children and adults with all kinds of issues. Something I particularly appreciate about ND work is that they believe the parents are best positioned to help their children, so it’s not about traveling to an expert to do some esoteric stuff that you would never be able to do – they tell you what to do and how to do it.

      As far as determining what’s right for your situation – I believe most kids who are struggling with academics or emotions could benefit from this work but every parent will have to research and see if this is something that makes sense for them.

      Since this is paid for privately, no insurance coverage, it’s not something we were able to do until now. In the big scheme of things, it’s not a lot of money for the benefits (about $2000 a year and for ds12 I don’t anticipate it will be ongoing beyond the year) but if you don’t have it, it’s a lot!

  6. Can you elaborate more on this topic?

    I would like to read more about neurodevelopmental tools. Can you share where you read up on this? Books, websites?

    Thank you

    1. Shaindy and Rafaella, I’ll try to put together a post with some resources but this isn’t a quick thing for me since I found out a little here, a little there over a period of two years, and the links to video presentations that I’ve watched have all been geared towards parents of kids with T21.

      1. Thanks, Avivah, I’ll be happy to read that whenever it comes. I am confused about what my son needs, and am doing more research into neurodevelopmental therapy because of your post. It has been helpful for me to start thinking of auditory processing issues with him, something I hadn’t noticed before. Any good material on this, please send it my way – I don’t think I’ll be paying private for an eval this year.

    2. Shaindy, I started with reading Glenn Doman’s books (specifically How Smart is Your Baby and Teaching Your Child to be Physically Superb) but I was kind of myopic in the early stage, with my focus just on T21. I wasn’t thinking about how these principles affected older kids. It wasn’t until this winter when I began researching infant reflex integration that I put everything together in my mind and realized that infant reflex integration was the flip side of the neurodevelopmental coin I had been learning about for so long.

  7. Great news. How did u deal with your sons emotional outbursts, yelling… while caring for everyone else and keeping them safe? Esp. because you knew it was a good thing but siblings can be getting hurt in the meantime.

    1. Sara, the main emotion that was being triggered was extreme frustration and that’s what was coming out. The screaming was mostly directed at me and I took a lot of deep breaths. Managing my own emotions was extra important when he was so volatile, so my focus was on staying calm and feeling loving, and particularly on not reacting with frustration to his outbursts.

      We weren’t dealing with violence or issues of the kids needing to be kept safe. My general approach to someone hurting someone else is to step in before it escalates. If someone does something over the top, I take very strong action to help them remember this isn’t a good thing to do in the future.

  8. I’m so glad to hear you’re seeing such progress. It is so encouraging to see (and take note of!) positive change. B”H, we are also seeing huge differences. It is amazing how the tone of the whole family changes when one individual changes.

    1. I’m really happy to hear that you’re seeing good things happening! Please keep me updated.

      In this post I wanted to write about exactly this point you mentioned, about how one child feeling happier positively affected the entire home atmosphere, but it’s a subtle point and I didn’t think I could give it over well.

  9. Hi Avivah,
    I know this is an old post but it’s something that I keep coming back to and rereading. I would be so grateful for results such as these for my kids, and I am very strongly considering bringing them to SENC. I am so curious, did the results hold? Are you still seeing positive effects from these steps that you took 2 years ago? Are the exercises something that you have to keep doing to keep the effects up, or will it naturally become part of the day-to-day brain function? I’d love a 2-year follow-up!

    1. Hi, Rachael,

      I went to the very edge of my comfort zone in writing about an older child when I shared this post so I won’t be writing another post on the topic. But I’ll share here that this son – now 14 – constantly makes me shake my head in amazement. He is consistently helpful, mature, kind and responsible. The same kid who used to shriek how much I hated him when I asked him to do a very minor task now willingly does whatever I ask (and this can be quite a lot at times) and initiates on his own when he sees something needs to be done. Sometimes he gets overtired or overextended and will show he’s stressed, that’s the kind of thing that can happen to everyone; constant explosive and emotional outbursts to minor provocations aren’t his regular responses anymore.

      I didn’t maintain the exercises as I would have liked but the results do hold from whatever exercises you do hold. I think more of this would still be helpful – I think most of us could benefit from this kind of neurodevelopmental work, actually – but he’s just a genuinely wonderful person and his behavior no longer keeps the people around him from seeing that. My husband and I often look at him and say to each other with a smile, “The miracle of maturation!”

      I can’t credit neurodevelopmental work for all of his maturing – part of it is time and emotional support. But patience and support wasn’t adequate to get this child over the inner roadblock that was keeping him from showing up as his best self and that’s why we turned to a ND program.

      It remains my job as a parent is to remember that it’s not about putting all the burden on him to keep his emotional equilibrium, but to understand and support his needs. For example, new situations when he doesn’t know what the expectations are, are stressful for him. It’s helpful for him when he gets a heads up about what will be happening before it happens. Sometimes we have expectations of our children that aren’t fair or realistic for where they are at the time and we need to adjust so we can truly support them.

      I hope this is helpful!

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