Sunday 9th April, 2017
Neurodevelopment and Down Syndrome
Interview with Kay Ness
“Nothing in creation can compare to the amazing capacity and adaptability of the human brain. Traditional thinking has believed that there are limits to the brain’s capacity. Research into neural plasticity of the brain (the brain’s ability to change and adapt) is greatly changing how we work with individuals with injuries, learning inefficiencies, sensory problems and genetic syndromes. While traditional thinking is catching up with the concept of neural plasticity, it is something that neurodevelopmentalists have been working with since its pioneering days in the 1940’s”.
Gab: I’ve always wanted to meet you. First time I heard about you was on Andi Durkin’s website.
Kay: I love Andi
Gabi: You’ve obviously spent time…are you still working with her?
Kay: No. Kenny took her to Wisconsin, so I don’t see her anymore. I skype with her occasionally. I adore them. I met Jett when he was 10 months old, he had just had heart surgery. I think he was 3 or 4 when they moved to Wisconsin. So I haven’t seen them again I’ve skyped with them a couple of times. Let’s say I’ve worked with children with Down Syndrome for a very long time before I met Andi and I was working with the Down Syndrome Foundation in Florida and so I see lots of kids. After Andi worked with me alot I think it was a year or two she said “I’m going to start a blog and I’m going to put your name on it, so make sure you look at it and make sure it’s ok”. And now everybody in the world reads Andi’s Blog, I mean she’s a relentless researcher.
Gab: Her blog has been a lifesaver for many parents I think because it’s just so full of information we couldn’t find anywhere else. You know…
Kay: She’s great…
Gab: She’s amazing…
Kay: And you know she holds a heart of gold, she helps people from all over the world, just praying their OPTIONS organisation gets going because we really need a good forward thinking organisation that’s really in the league for research…
Gab: absolutely, do they need funding for OPTIONS if its to go ahead every year? sponsorship?
Kay: they hired someone to help raise funds so I’m hoping that comes about…
Gab: All of us in Australia who are interested would love to come over but, it’s just a bit far, but it’s our dream, we dream of getting to OPTIONS…
Kay: Families come from all over…
Gab: actually I think there was an Australian family there last year, i think they’d just had a baby and that was the first thing they did, must have found out about OPTIONS and went over… My first question is the best one, you can just go for it…what first inspired you to become involved in Neurodevelopment work?
Kay: My degree is in Chemical Engineering…
Gab: Wow!
Kay: even while I was in school I was studying Montessori work, I was always interested in learning and brains and pedagogy, so when I had a child in 1984, you know this is how the Providence of God works, i was going through the book section at Goodwill, the thrift store, do you have Goodwills there?
Gab: No, but I’ve been to the US a couple of times and I know the Goodwill stores, thrift stores…
“so there was a little book there, my son was like nine months old, that said “How to teach your baby to read” by Glenn Doman, and I called the Institutes and said “can I come up and just hang out and see whatch’all do?”
Kay: We like to go there because the books are cheap and nobody buys them, on school curriculum you can get great stuff for nothing, so there was a little book there, my son was like nine months old, that said “How to teach your baby to read” by Glenn Doman, and I called the Institutes and said “can I come up and just hang out and see whatch’all do?” and they said “oh, we have classes” and I said “you have classes?”. So I was on the next plane to Philadelphia. So in 1985 I took all the classes at the Institutes. It was fascinating to me it just blew my mind. So I started my son on their program and at 3 1/2 years old he still wasn’t running, he would just walk, he was holding on going up and down stairs, he was already reading like 2nd or 3rd grade level and I transferred to working with NACD and started on their program. The Institutes had told me my son wan’t running because I wasn’t enthusiastic enough, but on this new program within 2 weeks he was running because we worked on weaknesses of quads and vestibular.
Gab: sorry Kay, I missed what his diagnosis was…
Kay: he has the misfortune of being my child…
Gab: Oh, Ok…
Kay: he was neurotypical…and I worked for NACD for 12 years, and trained with them and started doing evaluations and so forth, so I’ve been involved in the work since “85 and in ’99 we split off and formed ICAN, we left NACD and formed ICAN…
Gab: so did you work for NACD, or were you just involved with them though their course?
Kay: I worked with NACD for 12 years, I did parent support, i did the program, i trained people to teach the program, I did all that…
Gab: got it!
Kay: you asked what was the difference between our work and the other organisations? if you want to know the truth, the developmental profile that they use, are you familiar with that? it’s incomplete. But remember its called the Doman/ Delacato profile…Bob Doman did some of Delacato’s work …we learned alot of extra techniques there, so it’s an expansion of the Institutes program. At the Institutes you do hours of creeping and crawling, but if the stimulation is specific …this impacts the system better and you get the changes faster. We met with him [Delacato] before his death. He was a little man in an apartment in Philadelphia totally forgotten, he was a genius, he really was, have you read his books?
Gab: No I haven’t, the name is familiar, but I probably will after speaking with you, go and research him a bit…
Kay: get all his books and read them…
Gab: as Australians, we hear alot about the IAHP from parents who have been over there and done the course, and we don’t here as much about NACD, I don’t know why, maybe they work more locally in the US…
Kay: Delacato spent time in Australia and did some training down there, I actually have a book that was written by teachers in Australia under Carl Delacato’s training, again its one of those things I found in a bottom box in a Teacher’s supply store, never seen it before, no mention of it anywhere, its just amazing, and he was in Australia for a while…
Gab: When did he pass away, Delacato?
Kay: he died about 5 years ago. But we did meet with him before he died and he told us ‘ we were so arrogant, we totally left off the cerebellum”. My point is, if any organisation says they know everything, they’re wrong. The developmental profile is not complete, pieces are missing, so what we want to do… there is validity to hierarchical development and also neuro-plasticity, those are the concepts on which its based and they are totally valid, but some specific ways to stimulate the system to take advantage of neuroplasticity include trainings in Oral Motor Therapy with Sara Rosenfeld-Johnson, Reflex Integration training with Musgutova, Dr Blomberg Rythmic Movement and Sally Goddard in the UK, so we’ve done Reflex Integration which has some wonderful answers and questions for us, for our kids with Down Syndrome, there’s a couple of reflexes that do not get integrated and you wonder ‘why do the kids sit there with their hands by their sides all the time?’ why do they have a flappy toed walk, those are integrated reflexes…
Gab: we’ve done some work with an MNRI therapist in Australia, and I would love to do more, and I will do more in the future, but we can only afford one thing at a time, but I do see a lot of value in reflex integration, I think its fantastic…
Kay: we can include that in our evaluation…
Gab: Would you say the work you do with clients is a combination of all of these things that you’ve learned over the years, would you say you’ve picked the best of the therapies, or are you more aligned with one thing, how would you describe your approach?
“therapies are so much better now than in the past, so much more effective, also we can get at issues that we couldn’t get at before…”
Kay: therapies are so much better now than in the past, so much more effective, also we can get at issues that we couldn’t get at before…
Gab: you know I totally understand that… as a practitioner…
Kay: well we’re constantly doing new training, like we just did SOI structure of intellect training, sound therapy training with Steinbach out of Germany, Vision Therapy training with an optometrist in the United States,…
Kay: we have sought out and trained with as many of the old institutes folk that have been out there working by themselves for decades that we could find to take advantage and learn from their years of experience.
Gab: you know I’m so glad you said that because, i know practitioners who go it alone and I think to myself, why wouldn’t you want to learn from people that have come before you, you know why wouldn’t you want that knowledge as a basis for then what you’re going to go and do yourself, it doesn’t make sense to me that someone would just start working without some kind of mentoring or working with the people that have come before them, i’ve been thinking of that for a long time, i see a lot of sense in it…
Kay: don’t trust anybody that doesn’t think they have anything to learn…
Gab: its humility, you’re right, and I’ve been trying to work out what it is, its really just a lack of humility. I mean look at you, you’ve been humble enough to go and work with all these people, old and new and formulate a program which is the best of everything, that’s ultimately what you do isn’t it, you can take the best of everything…
“well your knowledge as you grow in knowledge in your field becomes like a big hologram and you add more and more pieces to the hologram universe”
Kay: well your knowledge as you grow in knowledge in your field becomes like a big hologram and you add more and more pieces to the hologram universe, and you know where to fit things in as you learn new things, and that’s what the developmental profile is – a hologram. I can put pieces as I learn new things, I do a lot more nutritional stuff than my colleagues …
Gab: I noticed that on your website you talk about metabolism and metabolic issues. I was impressed, that’s very open minded, there are a lot of therapists that have no…even if they have an idea of nutrition, they certainly don’t understand nutritional interventions that people with DS are using for example, even a lot of parents can’t get their heads around it, its amazing to see that, in fact i was surprised and happy to see, it really looks to me like you address the root cause, that was the impression I got from reading the website, was that, not only are you progressive, but you are really looking at the root cause. In Australia we have problems with therapists who are not open to anything new, if you ask them for something new you’ve heard about they immediately say no. Not only are they not looking at the root cause, but they don’t want to either, its very frustrating as a parent. So I’m very happy to endorse you for that reason, because I feel very aligned with you and the work you do…
“the good thing about the developmental profile is it doesn’t separate into pieces, into speech therapy, OT, PT, ST, DT… it’s all one piece, holism…”
Kay: the good thing about the developmental profile is it doesn’t separate into pieces, into speech therapy, OT, PT, ST, DT… its all one piece, holism…
Gab: Holistic… are you talking about your own developmental profile?
Kay: well I pretty much use the same profile as the Institutes with some modifications.
Gab: what do you consider the greatest challenges for children with Down Syndrome?
Kay: getting the world to understand that they can accomplish things…
Gab: yeah…absolutely…
Kay: the bigotry of the world. The first girl i worked with with DS Amanda, Amanda was in a typical school, her mother was a teacher there, at a Christian school, every course she wanted to take, her mother had to fight for her, I want to take Spanish, well they wouldn’t look at the fact that she could read well, they would look at the fact she had DS, right, so Amanda had to fight every step of the way, and she graduated at 20 with a high school diploma, and then I moved and lost track of them. But um, Amanda was funny, I was there one time and she turned to her mother and said ‘Mum, don’t use the D word’ and her mum looked at her and said ‘what D word”, “you know”, “what Amanda”, “you know the Down Syndrome word”. “Everybody can see you’ve got Down Syndrome” “how”, “well you know, your eyes”… “not if you don’t tell them”.
Gab: well I think she’s right, I don’t honestly see a huge difference, maybe because I have a child with DS…
Kay: You wanna hear a funny story? I have a family in Australia that are Chinese, they have a little girl with DS, and they didn’t tell the school she had DS…
Gab: and they wouldn’t have noticed…
Kay: they don’t know, she reads well, she does all this stuff well. Its reached the point where I don’t see Down Syndrome faces anymore…
Gab: I don’t either, I think they’re more beautiful…
Kay: when I meet the older ones that have not been treated, they have a thick neck, they have the mouth breathing, its very disturbing to me, it breaks my heart because the world needs to offer more, it is an exciting time, lots of stuff can help…
Gab: do you notice a difference between DS people who are treated and not treated when they get to adulthood?
Kay: you know what, I think the main thing is nutritional intervention, the ones with proper nutritional, metabolic, thyroid intervention and also specific developmental stimulation are more physically adept, more structurally slender, stronger and often more capable. If it is developmental, that is the key – that means intervention is possible so all the problems that individuals with DS have are often developmental which gives us the opportunity to intervene and reach a higher level of function.
Gab: you know most of the mums i meet on the facebook groups have young children, alot of us don’t know many DS adults, and we certainly don’t know alot that are treated versus non-treated, so we’re told that DS is a chronic degenerative disease and that intervention is important, but its difficult for us to visualise the two paths that our children could take, we sort of have to trust that what we’re being told is correct and we do, and then we have some examples but not alot, so its interesting talking to someone like you who’s had years of experience working with people with DS, but its a huge motivation for us to support their health using nutrition, we need that motivation, because everything we do is intense in the young years…
Kay: the increase in oxidative stress in DS causes degeneration and early ageing, we have to stay ahead of oxidative stress, we have to treat the growth hormone and thyroid hormone and fix it, and also the palate expansion stuff there’s lots of exciting things going on, you know Dr Weston Price did palate expansion on individuals with DS in the 1920’s, hello, and they are doing it now…
Gab: I’ve got his book here somewhere…
“never doubt the intelligence of your child, never doubt the intelligence of a quote ‘low functioning child’, intelligence is there, alright, they can’t access it, they can’t use it, they can’t process it, but the intelligence is there, as the image of G-d, in each individual, so do not doubt that at all…”
Kay: they did it in the 1920’s, and showed improvement in cognition and so forth, this is something i want you to keep in mind, never doubt the intelligence of your child, never doubt the intelligence of a quote ‘low functioning child’, intelligence is there, alright, they can’t access it, they can’t use it, they can’t process it, but the intelligence is there, as the image of G-d, in each individual, so do not doubt that at all…
Gab: that’s a great message and we do see it in our kids, they communicate really well with us, with the words they have, just like a typical child…
Kay: stay on top of the behaviour, she will take you apart…
Gab: she already is…
Kay: the first time I did evals with the group in Florida, I did evals with DS children, I did 5 trips out the door chasing kids, runners, at the end of the week I was exhausted, I said ‘what is it with the behaviour with these kids its awful…’
Gab: when they’re little they’re so placid and cute, you don’t really expect anything to change that much, and then when they get to three, and i won’t be surprised if it gets worse, I mean we love the quirkiness, but it does get a little bit out of control, especially when you hear the front door slam and then you’re like aaaah, quick…all race out the door, but that’s what bonds us, we all know that experience of running…
Kay: that’s dangerous…we work on behaviour also…
Gab: interesting…one thing that’s bothered me for years is my daughters mouth breathing, and when I read on your website that you can help with this, I perked up, there’s not alot of people that would help you with that, and there’s not alot of breathing therapists that would know how to address that in a child with DS…
Kay: when is she mouth breathing? does she have allergies? does she snore? does she have any other physical thing going on?
Gab: she doesn’t snore, she sleeps well at night, but i’ve seen her with her mouth open when she’s sleeping, we’ve used a saline spray to keep her nose clean…so I mean can you treat things like that?
Kay: you wanna make sure that all the congestion, vitamin K, D3 she needs that to keep mucous membranes strong, if there’s low Vitamin A you get fluid in the ears, you get it in the sinuses and irritation… I studied nutrition for 46 years, anything that reduces inflammation is something you need to look at, one thing I’ve seen is that the Longvida Curcumin (LC), there was this girl with low tone, after 6 months of taking LC reduced the inflammation and she just took off, you really need to do all the gut healing on GAPS, the ferments, the broths, 2 years…
Gab: If parents in Australia want consultations with you can you Skype?
Kay: yes, I have parents in Australia I Skype with…
Gab: How long are the Skype sessions?
Kay: I get them to fill out a form, and I set up a Secret Facebook page, and I ask them to send videos of their child, and I ask them questions, and then we’ll have our Skype session, that’s about one to two hours, and we keep in touch with the Facebook page…
Gab: how often do you see clients? what’s the duration of the program?
Kay: every three or four months, with the Facebook page we communicate, and we can modify the program, I write a formal program, it will be a list of things to do and then I teach them how to do each activity and then they can post videos and show me how it looks at home, and i can say lets do it this way or that way, or that’s not working try this…
Gab: what are the costs/ payment options?
Kay: initial evaluation is $625 and that includes everything, then the re-eval is $375 every four months…
Gab: what is the best way for parents to contact you?
Kay: kayness.com, that’s the website.
Gab: anyway, so lovely chatting with you, I always learn so much from these interviews, its making me a much better person, seriously…
Kay: I just love meeting these wonderful people…
Gab: I know, I actually can’t wait to meet my clients next week, so many amazing parents out there and therapists, ok…thank you Kay…
Kay: go get your rest in…
Gab: talk soon…
