When this research came out in the nineties, it was an instant hit and more hope sprung eternal for all! Our brain remains pliable for change until the day we pass from this earth. Gone were the days that when a “ceiling” was reached, the only thought was that this was going to be as far as we can take a child. No, endless possibilities opened! When I reach a “ceiling” now, my thought is rather: “What do I not know yet? What else must I investigate?” And due to technology, the information age and multiple wonderful advances in research related to human behavior, it remains a continuous journey of learning! Oh, so much joy as well! For the sake of privacy, I will change their names, but I would like to recall some cases from the past to illustrate the beauty of this truth that is with us today.
I remember well the day when both Ronnie’s parents were in my office, crying out for help for their child. The tears were flowing freely as they described a young man in his early elementary years, diagnosed with Autism and living through several severe meltdowns per day, strongly oppositional to all expectations. With what we knew at that time, we worked with him for 5 years, more intensely in the beginning and less intensely in the last 2 years. His mom wrote me a recent e-mail:
“Hope you’re doing well! We are in full college mode over here for Ronnie, and I’m trying to let that sink in just a little, because I remember when…
He has applied to MIT (his dream school), Cornell, Princeton, Harvard, Drexel, Temple, Virginia Tech, and Alabama. As we did some research, he discovered that MIT and the Ivy Leagues are probably not the best fit, even though they’re great programs. His first choice is Alabama. They downloaded his application 2 weeks and 1 day ago, and today, he has the acceptance letter in hand. He’s waiting to hear from a couple other colleges, but I think this is where my precious, precious boy is going to end up next year! Maude, there are almost no words! How do I say thank you? We will definitely come see you all before he moves to wherever he lands. Please let me know when you might be available for a pop in visit and hugs! Love to you, thank you for sharing your gift of understanding hearts and minds.”
How amazing is that? The work we did as a team to support Ronnie and his family was targeted intervention that supported both the neural mechanisms as well as his emotional mental health. Ronnie was able to live in his own skin and is ready to take on the world! Such a bright, smart young man!
We also worked with Helen, who followed a much shorter, yet intense route. And we received this update from her parent late last year. We worked with her sister the year before with a really good result as well!
“I thought you would enjoy hearing how Helen is doing…..
So as you know 4th grade was a terrible year – we took a leap of faith and tried our public school this fall. Seeing how happy Linda is – I just couldn’t let go of the idea that Helen deserved to have the very same wonderful type of community to call home.Long story short we visited the school and loved it – this was somewhat surprising to me – but what I have learned is that Catholic schools are very structured and so for a kid that leans in that ADD direction, it can be really great… she started on January 3rd and it was the best decision we ever made!
Anyway – attached are screenshots of Helen’s grades this past fall – this kid went from a small private school to a large public school and earned straight A’s (with no special modifications)- her teacher told me she was blown away by her – she can EASILY write long stories now…. the gym teacher noticed nothing about her – she actually did really well on all those fall fitness tests….The school is much harder in terms of spelling words and lots of science and history to learn – but the quality of what they are learning is so much better….So, here is finally a kid who looks relaxed and happy, she has found her place, and she is succeeding!
PS – Linda is doing great – also straight A’s – scored advanced on our state exams, has lots of friends, was a lead in the fall musical, and has had a few big time auditions in NYC – hasn’t landed anything yet, but she is doing great! As always, our hearts are full of gratitude for you!”
I so love it when families remember us later and have already written several updates in this blog section on “blasts from the past”. Permit me one more e-mail written in January 2022.
“Hi to two of my favorite humans! I wanted to reach out and bring some closure to a journey only you two can fully situate. When I reached out back in 2005, I was a tired, worried mom with a toddler with way too much energy. The peace and acceptance you helped me infuse into my family is something that I have held on forever. I know you helped Amy; but your programming gave me space, both literally and conceptually, to see my toddler without judgment. I began to understand her, and in doing so, over time, was able to help her understand herself. What a wonderful journey we have had together.
I am so, so proud of my daughter. You would be, too. Not ‘just’ for her accomplishments…but she is the kindest, most authentic version of herself that she could be. I truly don’t think we would have gotten here without you two, and your dedication to children with differences. Words are not enough, but please know I think of you two often and you both hold a very special place in my heart.
I am attaching her college essay, which was written from the heart, without assistance and earned her acceptance letter to her first choice college. I wish I could show you her art work…she went through the Honors/AP Art program and her work is exceptional (and currently on display at a regional art show. Yes, time has flown. And I really wanted you to see the outcomes, decades later of your amazing program. So much love to you both and hope you are both well.”
Yes, we have been at it since 2001, though we started the intensive route in 2003! And we are grateful for the knowledge that passed our way to help kids and families thrive. Our intensive route asks for a stronger time, emotional and financial commitment, but it truly delivers! And the results last over time. Do we get perfection? I am not sure what that would look like for each child, but we do support children to become who they need to be; children who are happy and ready to take on the world! Perhaps another time, I will write stories of the adults we are helping, since it is never too late to help anyone!
From the bottom of my heart, I thank each and every family that has placed their trust in us to help them! We are truly grateful!
By Maude Le Roux, OTR/L, DIR® Expert
A ‘lazy’ therapist mobilizes the mind!
Therapists are taught, coached, and led to become experts at task analysis and goal setting while at school. It truly is a wonderful way of learning and certainly equips us to negotiate clinical thinking in whatever our field of expertise may be. We pride ourselves in being able to figure out fun and playful activities, and we love it when kids want to come and play with us. It really boosts the ego when we become one of their most favorite peeps!
Then along comes Floortime and we try to be everything at once. Gradually it dawns on us that even as it was great to learn the way we did, children go about it slightly differently! Entering a therapy room with no specific task in mind is quite a transformation as we have to follow the child’s lead. This requires observation and more time for clinical thinking rather than planning our usual succession of tasks. We have to think about where they are in their mind instead of the goals we would like for them to achieve.
Then, as they settle on their first idea, we have to re-think their activity and use Floortime techniques to scaffold them to just the next layer of challenge–only a bit further! At first, it is daunting to feel unprepared, but over time, oh how much time it saves in all the pre-planning we used to do! So hence the term, a Floortime therapist is also a ‘lazy’ therapist! In fact, the ‘lazier’ we become, the more effort the child has to give. We learn over time that children are hard-wired to grow up and develop their skills.
Children with developmental needs are no different in this regard. What is different, though, is that this child not only experiences the pressures of being delayed compared with their same-aged peers, but they also go through the stress of performance demand in our good intentions to support them to ‘catch up’!
Floortime works from the child’s point of view. Some of our therapists and families are so afraid that if we ‘let go’ of our agenda, the child will stagnate and not grow ‘fast’ enough. Therapists are afraid children will not reach their goals, and families are concerned with improving their ability to speak, write, do math, and learn to read, etc. These are valid fears and not to be minimized, but respected.
The truth is actually simple in its complexity. When we create a safe space, we also provide a container of safety within which the child’s nervous system has the opportunity to settle in a comfort zone of their own interest, which increases the natural instinct to intrinsic motivation. Once motivated, they go at it themselves, and as we follow, our mind has to negotiate that next step in mobilizing their mind to keep going forward, building those neuronal bridges as we play together.
In actual fact, they reach their goals faster and much happier than being pushed and prodded with all our good intentions in mind. So yes, a good Floortime therapist is ‘lazy’ in planning, but oh, not lazy in our heads! It is an ongoing stream of consciousness that is so rewarding, so touching, and so beautifully successful!
The following was part of an e-mail sent to me by a client who has struggled with EMS for a long time. She was responding to an inquiry we made as to her current status. Eosinophilia Myalgia Syndrome (EMS; diagnostic code M35.8) is a systemic, immune mediated disease thatoriginally surfaced in the United States as an epidemic in 1989. EMS resulted from ingestion of an amino acid, L-Tryptophan, a popular health food supplement at the time. The FDA temporarily recalled thesupplement in March 1990. L-Tryptophan has been freely available in the US again since 2005.Often, EMS is highly debilitating and can cause permanent damage. Because there is no cure and the prognosis is unknown, EMS is treated symptomatically.
“Getting around slowly to answering your question below about stress, I’ll say that I have known a few others with my medical condition who have over sensitivity to sound. No one I know has had symptoms as extreme as what I had in 2019. I have understood from at least three other women that certain sounds — I’m talking sound of refrigerators, air conditioners, and perhaps also sounds broadcast through a sound system — are intolerable. I would say from conversations with these people that it has not produced the amount of pain that my own hyperacusis produced. It seems to be a lower level of discomfort, enough to make them careful to be not close to the sound source for more than a very short period of time.
People with my medical condition have frequently reported over sensitivities to light, to smells. Related I think — we patients all seem to benefit by physical exercise, however the wrong exercise or too much of the right exercise brings negative results and very quickly. An example, before the pandemic when I was swimming every other day, if one day I increased my laps from 8 to 9 I was a candidate for days of pain and body dysfunction. Now I’m doing my exercise on dry land, because of the pandemic and pool closures, etc.
I don’t feel that my hyperacusis symptoms have ever had emotional stress as something germane. The very first moment with hyperacusis, in 2019, I was also having an ear issue. I had suddenly lost hearing in one ear. Strange to say, it took a while to discover why. I went to my GP, who looked in my ears and said he saw nothing problematic but that I should go to an ENT. I delayed going to an ENT because in past years ENTs had not helped me at all. (There’s more to this story and I’ll be happy to share it all with you if you like — concerns another sudden hearing loss, with no help from ENTs but finally my osteopath got my hearing back with OMT – I thought it was a miracle.) So I didn’t go to the ENT immediately at that moment in 2019, and in the next week the hyperacusis came on drastically, over a few days, right after the very loud sound of a building fire alarm in our apartment building–I was out in the hall and heard it full volume. I kept trying for help with my current osteopath. My genius doctor even came out of retirement to try and help me, bless him! Nothing worked and I was still without hearing in one ear. Well, stubborn me, I finally consulted an ENT who found — **wax** in the ear. Oh my, I felt like a fool for not going right away. She removed the wax and my hearing popped back.
The hyperacusis remained, very painfully. I am so thankful though, because then I found you.So now, a couple years after the horrible onset of hyperacusis, I think about the answer to your question about stress. I have always felt the hyperacusis symptoms to be a result of physical stress, as with other symptoms of my autoimmune illness. First, the hyperacusis came on with the non-functionality of one ear due to the fact of wax, after which the extremely loud sound came on. Then came hyperacusis with much pain.The therapy from you relieves the pain.(Tomatis Sound Therapy and Soundsory)) My guess is that the listening therapy works on the body tightening that is part and parcel of my immune system disease, and your treatment relieves and relaxes the body tightening in a very physical way.
Since 2019 I’ve had to sleep in our office apartment in the summer because that apartment contains our quietest room. It’s not just that my husband needs the air conditioner on, but even when he’s cool enough, the AC sound from neighboring apartments is something I can’t tolerate. This past summer when I’ve tried to sleep in our own apartment if it’s cool enough that my husband doesn’t need air conditioning, I wake up in a couple hours with pain near my ears and I believe it’s from neighbors’ AC units. Then I get dressed and go to the office apartment for the rest of the night. (At least there are two good cat friends in there!)When all air conditioners are off for the season I get back into my own bed. But I sleep upside down (haha) with my head at the foot of the bed because the building systems sounds are louder at the walls, where the head of the bed is.
So by this summer of 2021, my tolerance for difficult sounds has increased. In the early summer, even though I couldn’t sleep in my bedroom, I could tolerate air conditioning sounds for some minutes so that I could have meals in our apartment, stay for happy social time and not demand that AC be totally off, that water could not be run in the sink, etc. As the summer has worn on there have been more physical stresses due largely to exposure to AC sounds. Hyperacusis issues have increased.
Thankfully I have your listening therapy. I’ve been using it more and more as the summer has worn on. I’m doing OK! And I think soon the offending sounds will be gone for a while.
Maude, again, I can’t thank you enough.”
Tomatis Sound Therapy and Soundsory (a side product of the Tomatis Method) is a powerful little tool that can create real relief for many different reasons and applications. It should not ever be seen as a “cure” though, more a strong support that has relieved many of our clients, children and adults over the past 18 years of our experience with it!
We live in a world today where we get packages delivered in same day / next day services, where we click on a button for instant gratification, where we, as a society, do not have to wait any more. It is all about getting what we want when we want it. It has been quite interesting to listen to our friends complaining how Covid19 has slowed down production of certain things and we now have to wait longer before we receive it. Another feature of life today is that we overschedule ourselves so we hear many people note that they are “soooo busy”(Myself included, lol)! There is always something we have to do. In the midst of all of this, we have children who may struggle with a developmental delay with or without a diagnosis. Developmental delay is defined by the understanding that development is occurring at a slower speed. This does not mean that the child’s intelligence is slower, simply that the nervous system is operating at a slower rate to accomplish the massive amount of development that needs to occur especially in the first 7 years of a child’s life.
A developmental delay is not a life sentence and it is not a brain injury. Our brain is neuroplastic and has the capability to change, to cope, to adapt to every stage of our lives. Somewhere though, a notion has started for families that the child has to “catch up”. One wonders what this means for different families. And also, who is responsible for leading families into this state of perpetual worry if their child is going to “catch up” or not. Though it is not the only consideration, there is a strong indicator that we as professionals do carry some of this blame. We do evaluations comparing and contrasting children according to their peers across the nation in standardized tests. We spend much time explaining what and why the child cannot accomplish certain goals at a certain time. We introduce the idea of therapy to support the child through the stages. There is nothing wrong with this process, it has to be done, but it is also “how” we do this that matters. What do parents feel when they leave our consultation rooms? How did they receive this information on their child? What type of action did we spur them to consider as they leave us?
Even as we live in this faster paced world today, development is still running its course since the beginning of time. We are still carried 9 months in utero, if all goes well, we are still born the same way, and we still spend the first 18 years of our lives in dependency of our parents in different shapes through the developmental stages. The reality is that no one has the power to force development to go faster in natural environments where there are no disasters. Our notion to get the child to “catch up” is one that is fraught with anxiety and fear inside our parents and they do what every good parent will do: They go to work! They involve their child in therapy, additional tutoring, fight for Individualized Educational Plans (IEP) at school and work harder to provide more funding to pay for these services. Again, there is nothing wrong with this as this would all be necessary to support the child.
But in the midst of all of this, we have to consider how the child with developmental delay is receiving this? How would it feel to have a perpetual round of therapists working and playing with you, also within the safe space of your home, your inner sanctuary? How does it feel when relationships come and go? How does trust develop in relationships? How does the child understand the constant pressure of needing to “prove” they need to “catch up”? Even as we do not talk to the child about our needs for them, they pick it up in every nuance and overture as they note what types of things we would comment on and which things we ignore. They do pick up these intersubjective messages from their perception, not from the well-intended notions of the adult, increasing the pressure and anxiety they are already experiencing.
What do we do?
- It is good to have evaluations completed and to know the strengths and vulnerabilities of a child’s profile
- It is good to use intensity and frequency in a therapy program as neuroplasticity research requires this in order to change nervous system pathways
- It is good for adults to have goals in mind and to work towards it, but it is not good if the child picks up that they are being pushed and prodded towards skills and activities of which they do not understand the meaning of. Natural development comes from having the intrinsic motivation and wiring to grow, not from external pressure. This has not changed and it never will.
- Therapy should meet the child where the child is at, not somewhere in the future. It is the moment now that counts, the current ideathat needs to be mobilized to support the unfoldingof the next sequence.
- If play and playfulness was good enough for the typical child to grow and develop, it has to be good enough for the atypically developing child. It simply does not make sense that the child with developmental delay is developing at a slower pace, but is expected to work (catch up) at a faster pace than their peers.
How then? What do we do?
- Put the therapy team of choice in place and arrange the village of support around the family.
- Decide on a course of action and create consistency and stability in the child by sticking to it, so they can feel safe and secure.
- Every moment counts, but not in the expectation of tomorrow, just focus on this moment in time to support growth and development in the now, just like every other child does.
- It is not about not having a plan, but about executing the plan in playfulness, acceptance, conveying safety and security, decreasing anxiety to increase the intrinsic motivation to want to communicate more, to want to please more, to want to achieve, to want to take the risks to gain new learning.
- Look for signs if the child is avoiding tasks more than they are tackling them. Therein lies a message. How can the “village” support the child to rather mobilize that same energy into channels of growth and necessary risk-taking behavior which will result in problem solving and positive social emotional behavior.
- Most importantly, slow down the moment to meet the child’s processing speed so the child is motivated to remain in the moment, supporting themselves to go forward. When we use this “go slow”, the child relaxes and natural development drives the child to do the necessary exploration, knowing they will be kept safe and supported by the adults, and not risk disappointing the important people in their lives.
The real truth is that when we “go slow” in the moment, we reach our goals for the child faster! Waiting, watching, and wondering what next to do to mobilize the child’s mind is the single most powerful technique to have the child trust that the adult will be a safe and secure base, enabling them to do what the moment is asking of them to do. And so doing, natural and spontaneous development will also be available for the child with an atypical developmental profile.
In speaking to those who have experienced the dreadful illness that Covid19 brought to us, some really interesting things come to light from a clinicians view point. Even though “brain-fog” is not a medical diagnosis, the experience they describe is similar to having a cloud covering in their brain throughout the day. 25% of Covid19 sufferers describe a daily battle of trying to operate under this cloud and still experiencing the fatigue even long after the actual illness have left them. Some describe memory lapses and feeling confused in what should have been normal circumstances. Focusing on tasks takes more effort than before, leaving them not being able to function as optimally as they used to do. There are also reports of experiencing continued headaches.
According to www.healthline.com a study in January 2021 found increased levels of cytokines in the brains weeks after the infection had occurred. Cytokines are produced by your immune system and encourages inflammation. This may hinder theintegration of the nervous system, which certainly does sound alarming, especially in children already pre-disposed with integration difficulties before being affected by Covid19. There may be cognitive structural difficulties occurring as well. However, please note that the studies have been small and there has not been sufficient time yet to bring about a larger scale study. There is no data with regards to how temporary or not, this may be. Factors that may influence being susceptible to this impact may be the severity in which the virus impacted the person, in other words, how ill the person became. Early studies reveal symptoms lasting as long as 100 days post the viral attack. There is some indication of mood changes as well to consider.
From what can be gathered on the internet, the general guidelines to gain relief of this condition would be to make sure one gets enough sleep, exercise regularly, eat well and avoid tobacco or alcohol.
Apparently, researchers are still looking at who might be more susceptible to these lingering symptoms, and it will be an ongoing question to investigate. As we work with concussions at our center, the symptoms described sound very similar to those clients who came to us for concussion relief before Covid19 was on everyone’s lips. With each client we initially do a thorough investigation of their background. In their histories we detect an earlier history, prior to the first concussion, of possible neurological developmental delay. We do not have a research study and cannot provide statistical data, but it is a common factor we have observed and gleaned from our client profiles. We will not be surprised if researchers find commonalities between concussion and post Covid19 clients. Similarly, we will not be surprised if they find a pre-existing neurological developmental delay in the histories of those who experience this type of brain fog post Covid19. Please take note there are no espousing of facts here. At this stage there can only be speculation, even as our speculation is based on clinical understanding.
For those who do not find relief from their symptoms over time, we would suggest a clinical interview and / or clinical testing to gain access to what can be done about it. Our brain is neuroplastic and malleable and shown by research to have the capability to change. If we could change concussion symptoms, chances may very well be, that these residual symptoms of Covid19 can be helped as well. As I mentor globally, I have already heard that some clients have found relief through the Tomatis Sound Therapy that we do, but we have not had our own experience at this time. We will keep you posted if we do.