• Stacey Smiler

Why has the identification of learning disabilities increased?


In the past I have been asked why more learning differences amongst children are prevailing..Well firstly, we can’t be sure they are ‘increasing’ or if they are now better recognised.

We can be sure diagnostic tools and medical assistance such as genetic testing have improved..which means or should mean that more people are getting the help they need (should they need it) as their differences are addressed.


Research has improved vastly due to higher quality screening tools which means there is more solid data to present, in particular surrounding special needs such as Autism Spectrum Disorder (ASD). Dr. Amy Houtrow, Associate Professor at Children's Hospital of Pittsburgh, comments; ‘I also think there might be some shifts in terms of how society feels about talking about disability, being more open and seeking out a diagnosis’. I would hope that as more people open up about developmental, mental and physical disability conversation can become more commonplace.


For some, they dislike ‘labels’. This is a personal preference of which I can see the argument from both sides. For example, a person with ADHD may not like to divulge their diagnosis at a job interview due to worries about stigma in the work place. However, what the employer may not realise is that ADHD can come with strong strengths such as increased productivity. We must strive to find strengths in our perceived weaknesses. On the other hand, when a person has an undiagnosed special need they may not get the assistance they require to function and thrive or even funding for therapy services. Therefore receiving a ‘label’ is often necessary depending on the needs of the individual.

With Keanu we were so relieved to get his genetic testing results in Hong Kong as it gave us answers regarding his epilepsy diagnosis. This provided the genetic diagnosis of having a gene mutation of the CHD2 gene which is thought to be responsible for neurone development. I say ‘thought to be’ because Geneticists only recognised this gene was related to juvenile epilepsy in 2013! Research is still in its infancy and the condition is considered extremely rare. As not much is known we don’t have an exact prognosis of how Keanu will develop. We are part of a Facebook support group where information surrounding people with CHD2 can be discussed. Keanu’s Genetisist in New Zealand shared that parents often know more than medical professionals as research is sparse.

When we think of some people in our lives who are ‘quirky’, people love to use this term to describe those with differences, there are definitely some who remain undiagnosed in certain areas..but it doesn’t mean they haven’t lived a full life! Sometimes we might find someone a bit odd or ‘out there’ but after having Keanu I adore noticing individual distinctions! If we didn’t have Keanu our lives would be seriously uneventful. When you are a special needs parent you can notice another special child a mile off and Jordan and I often just smile at each other because we both know.


This winter holiday we went to Queenstown, we had the least calm holiday you could think of, DISCLAIMER- no one ever stay at Hotel Saint Moritz because my kids have peed and pooped on the carpet haha! But there were lots of small moments of joy in there too. Making memories is so important regardless of the stress a disability brings.

So, if you are a parent of a child with special needs or instead reading this for interest & insight, I ask you to look for and hold onto the small moments because they are there and they are often the most meaningful.


Reference: https://www.npr.org/2014/08/19/341674577/whats-behind-the-stark-rise-in-childrens-disabilities

 

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