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Waiting on that diagnosis...then what??

Updated: Apr 17



I find myself in the honoured and privileged position of hearing the emotional stories of families struggling to “get that diagnosis” over and over again.  It’s a similar story each time, although each one has particular heartaches and instances of frustration and pain that the child and the family are walking through. 

 

Many parents (and I was one of them) believe naively that once that “magic” diagnosis of Autism or ADHD or Dyslexia or Speech/Language Disorder or other appears on their child’s paperwork, from that point their problems will be solved.   I only wish I could get a t-shirt, or bumper sticker or neon sign in my window that could succinctly explain why this is just not so….just kidding….but I DO really wish this entire conversation was more often explained and more pervasively understood.

 

In my part of the world in Northern Ireland, the sad reality is that what usually happens is the family either have to wait YEARS to be referred and seen for diagnosis or pay hundreds, even over £1000 just to get that diagnosis.

Once that diagnosis is obtained the good news is that the diagnosis can help caregivers, teachers and clinicians to understand the child more.  Probably the best part of this is that when the child is old enough to process and understand the diagnosis, the CHILD gets the opportunity to understand the way that their brain works more and, if this is done well, the child can feel empowered and relieved to know that there is a REASON why their brain works differently than some of the other children around them that are not struggling with daily life in the same way. AND…it can be powerful “ammunition” for the parent who is struggling to get support for their child in school, especially as it relates to getting a Statement of Special Needs or funding or any area where those diagnosis words can be very helpful to push through additional support that may be available for your child.

 

So, that’s the good news of diagnosis and that is why I am always going to be pro-diagnosis in my mindset.

 

HOWEVER…

 

There is another side to this story.

 

The “support” that is available on the other side of diagnosis, when and if it is offered,  is often “top-down” not “bottom-up.”

 

For those of you who don’t know what the difference is between “top-down” and “bottom-up” approaches, let me explain briefly here: 

 

There is a lot I could say here but to try to simplify, the basic idea is that “top-down” approaches are the kind of support that seeks to ease or mitigate your child’s surroundings/environment to help navigate life with their diagnosis in mind.  Top-down approaches are good things that we need even MORE of like sensory rooms, extra time on tests, movement breaks, pencil grips, and visual time-tables: things that are put in place to help your child.  These are not bad things! In fact, they are super and the more we have them in your child’s environment the easier it will be for them. I'm a HUGE FAN.

 

But it’s very important to understand that none of these things actually address the underlying physical factors that may be at the root of your child’s presenting symptoms. None of those things are therapies or programmes that can help your child “from the bottom up” or from the “inside out.”  None of those “top-down” approaches gives you or your child hope that their presenting issues will be eased or be made better or less symptomatic over time.  They are like an aspirin helping pain for a while, but it doesn't address why the pain is there in the first place.

 

Bottom-up approaches work best when they are addressed in developmental order and they can begin as foundational as on a cellular level.  So at the very bottom would be biochemical issues, like nutrition and vitamin/mineral/hormone/toxic load/blood sugar analysis that your GP can look into but are more thoroughly addressed by highly qualified nutritional therapists like https://www.brainstormhealth.co.uk 

 

For example, children with ADHD often have significant biochemical issues (i.e. possible high copper, low zinc, etc) and if this is identified through lab analysis and addressed, there are some instances when medication is no longer needed to the same degree because the underlying biochemical imbalances have been addressed.  This can often also be the case with children who have asthma, eczema, PANS (PANDAS), IBS/gut issues, and some mental health issues to name a few areas that can be treated with significant results at a biochemical level.

 

Next in line to address is Neuromotor Immaturity:  primitive and postural reflexes. These building blocks of our nervous system are critical to address in order to determine if these automatic functions that were created by our brainstem in very early development are all in place and "integrated" as they should be. If they are not operating as they should be as automatic functions, then the cortical (thinking) brain has to do too much work to make up for what the automatic functions are not doing on "automatic." This creates a scenario where the child is overusing parts of the brain that were never designed to have to work that hard. This creates the exhausted child whose overactive brain uses up every bit of extra capacity that the child next to them doesn't need, doesn't use and has loads of extra capacity for learning, daily stresses, organisation, attention, etc. The child next to them is a cup with room at the top that doesn't overflow. The child with Neuromotor Immaturity is a cup already filled to the rim and any extra stresses or challenges send them into overflow....and this happens every day of their life.

 

Auditory processing is another developmental issue that has to do with how our brain interprets what we hear…and all of this begins in our very early development too.  It too can create nervous system overflow that can translate to difficulties with listening, attention, concentration, understanding, learning, reading, spelling, social skills, speech & language, anxiety, and hypersensitivity/sensory Issues.


If you know me and Map & Compass…you know reflex integration and auditory processing are the areas I can go on and on about. BUT I WON’T in this post because I want to explain more about DIAGNOSIS.

 

But do you see a correlation?

 

What developed early has a very significant effect (negatively or positively) on our overall development.  It makes sense. Whether or not the foundations of our nervous system are secure, mature and in place as they should be can make a world of difference in how we operate. And so, addressing and working to correct what happened, and may have gone “sideways,” early in development can also have a cascade of positive implications for our nervous systems.

 

Reflex integration and auditory stimulation programmes give the nervous system a “second chance” when things don’t go well the first time.  These are the areas of therapy that are used at Map & Compass.

 

They are not a CURE and I don’t speak of “fixing” children or over-promising results, but it is a highly researched area of therapy and intervention as a truly “bottom-up” approach that has been around for 5 decades with thousands of lives that have been changed for the better all around the world.  Have a look: https://www.mapandcompasstherapy.com/research

 

And then after reflex integration/auditory stimulation are all the great therapies like speech and language therapy, occupational therapy, brain training programmes, and tons of good stuff.  But you want to do these in the right order. If biochemical and reflexes are not addressed first, then you are working with a wobbly system without a strong foundation.  That’s why working from the bottom up developmentally is the most sound way to help your child.

 

For example: I didn’t know this when I was giving my child hours of handwriting exercises! Handwriting for the child `I was working with was never going to get better until the underlying issue of multiple retained reflexes was addressed.  But I was a mother who didn’t know, who hadn't been taught otherwise, and who was just trying my best to do what I was told to do to help my child. Mothers...Dads...carers...I see you and all the ways you are trying.

 

And it’s certainly not that these other therapies are negative. They can be an incredible provision and intervention for your child! They just need to be done in the right order. When Neurodevelopmental Therapists work in partnerships and understanding with therapists like Speech and Language, Occupational, Play and Nutritional Therapists, along with Behavioural Optometrists, Podiatrists, Physiotherapists, etc etc. you have a VERY powerful force of services of intervention that can be done in a developmental sequence.  All these different kinds of therapists/modalities need one another to tackle all that needs to be addressed to serve our children with the best support.

 

Let’s get all this done in developmental order to give our children the best chance to reach their potential.  Suppose we can give the foundations of their nervous system the best chance at being the best it can be. In that case, we stand a much better chance at seeing if their nervous system…when it is operating more closely to it’s original design…can begin to operate in an optimum way that creates less dysregulation for them and more regulation and ease. 

 

So what does this have to do with DIAGNOSIS?

 

Well, unfortunately, the standard route of getting a diagnosis does not always (in fact rarely) provide “bottom-up” therapy or programmes for your child unless you seek them out. 

 

So you can have a diagnosis and still not get the kind of help for your child that sets them on a course towards hope for their future.

 

Map and Compass was established to spread the word to every parent in this situation…”Isn’t it worth addressing the possibility of underlying physical factors?  Isn’t it worth knowing if something can be done that could help ease your child’s presenting symptoms instead of just trying to make the world around them less difficult ?” 

 

The truth is…

 

Diagnosis is good, but it’s not the end of your journey.

 

And you don’t have to have a diagnosis to begin a programme at Map & Compass.

 

In fact, most of the children that are seen are either (1) waiting for a diagnosis or (2) falling somewhere under the radar enough to not be in that category…but there is enough there to note that life is more challenging for them than the next child. And many times the physical assessment is a great relief realising that there really is something that is making life harder for them!  And we can DO SOMETHING ABOUT IT!

 

And for the children that do already have a diagnosis, it is such a positive experience to be doing something proactive to address that diagnosis head-on and give that child the very best chance to reach their potential.

 

A diagnosis can be a good thing as long as you understand that it’s just a stop along the journey and not the destination. 

 

There is so much more to say and explain, so if you would like to find out more, please feel free to be in contact.

 

I would love to talk to you about it if you think Neurodevelopmental or Auditory therapy may be a good next step for your child.

 

“Setting a course towards hope”

 

Tori Sheppard

 


 

 

Next steps: 

 


 

 

You may be someone who has been in contact with Map & Compass in the past, but you are now more ready to take the next step.  If you would like to go ahead and book an Initial Consultation the link is here to do the appointment on Zoom


 

**Please note:  Due to difficulties with the online booking system, ALL of the in-person appointments for Map & Compass must now be booked in person or by text or phone call on WhatsApp +44 7418 610354

Online appointments can still be booked online through the booking system.

Apologies for any inconvenience.

 

 

 

 

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