Coping and Living With Learning Disabilities: Above and Beyond

People living with physical, sensory or intellectual disability, in most cases, just require some help to allow them to perform everyday tasks like the rest of us.

On the first Ever episode of the Incre-mental podcast, I had the pleasure of talking to Doris Blowers, a mother of two sons - both of them are participants in the National Disability Insurance Scheme (NDIS) - and one daughter. Anyone in her position would have been through a lot. But just how much she has had to deal with is pretty hard to imagine. Below is the story of her experience and the difficulties she's faced over the years…

Learning disabilities are more common than you think

Studies have shown that learning disabilities are more common than we think. One study even went as far as to say 1 in every 5 people has a learning disability. What I find more significant is the high percentage of cases that go undetected and/or undiagnosed until the individual reaches adulthood.

Early Signs

Doris had reasons to believe something was wrong with both of her sons. “My older son always had problems in general, wouldn't sit still.” She told me. "But then, it was the younger one that was my main concern". "..., He was a little bit smarter in the brain and he said things that made you think nothing is wrong or you don't realise."

Learning disabilities vary in children, and parents are encouraged to look out for some common signs or indicators. While noticing one or more of these signs can leave you suspicious, it does not necessarily mean the child has a learning disability. Ultimately, it is the doctor’s place to assess and diagnose whether the child has a learning disability or not.

Some early signs a child might show include:

• dislike reading and/or find reading hard
• have lots of trouble spelling common words
• find it hard to spot the sounds and syllables in words
• tell you lots of interesting ideas but find writing them down slow and difficult
• have very messy handwriting
• not feel very confident about schoolwork.

Learning disabilities are usually spotted during the first two years of school. By this time, the child is usually 7-8 years old. As for Doris, she herself got a hold of the situation early enough. She tells me they started noticing ‘problems’ when her younger son was only six years old.

Early detection, and where possible, diagnosis is important

It all comes down to potential. Children with learning disabilities may be first thought of to have lower intelligence than their peers. Whereas, they may even be more intelligent but have these 'problems'. Doris talked about what was standing in their way and preventing them from reaching their full potential.

It's important to reiterate that due to the way the brain works, problems manifest differently for each child and at different ages from one child to the next. Therefore, the role of parents or guardians in this regard cannot be overemphasised. As a parent, you know and understand your child better than anyone. If you suspect your child learning difficulties requires special needs, please, do not delay in finding the necessary support and assistance. Like Doris, a good place to start with is the child's teachers at school. Much like their parents, children also spend significant time throughout the day under the care of their teachers. Both play a significant role in the growth and development of the modern-day child.

Look at the big picture

Early detection and possible corrections of a child's' learning difficulties go beyond academic success. Succeeding in life takes precedence at this point. Once we are aware of these 'problems', necessary steps have to be taken to provide the necessary assistance. Otherwise, the impact of learning disabilities will become more apparent. The child at this point develops low self-esteem and the frustration builds, perhaps caused by the poor performance in school. And there is only so much anyone can take before the frustration reaches boiling point and they start acting out. Doris didn’t hold back when she tells me; “… and things went crazy and he went crazy at school and no one wanted to help him.”

The picture doesn't get any clearer. Unless there is a concerted effort to bring help to these kids that they need, learning disabilities do not just go away. Instead, they grow more problematic and the behavioural issues may soon start to develop. Doris provided a better perspective on such issues she experienced with her youngest son when she explained; “He started doing silly things and I can't explain it, but he was starting to play with, not like weapons, but he was coming home with elastics and sticks and he was acting like he needed to protect himself. But I don't know the full story behind that, and I still don't think I ever will. But then there were situations where I would go to school and he wouldn't want to go to class or he wouldn't sit in class or, they couldn't handle him.”

While early diagnosis increases and improves the child's chances of doing well academically as their potential permits, the big picture is that it also prevents the child from developing low self-esteem and complicated behavioural issues that may further affect the child's ability to learn the skills they need to have a normal, successful life as adults.

Testing and diagnosis for learning disability is a process

The testing and diagnosis of a learning disability is a process, and like most processes it isn't straightforward. And that is exactly what Doris experienced when trying to get her younger son tested. She mentioned that “no one believed me”, as she tried to seek professional help.

While Doris' experience may not be the case for everyone out there, that does not take away the fact that getting the relevant people to see things from your perspective as the parent can be a real pain and struggle. While having to struggle tooth and nail to get the relevant people involved shouldn't be prerequisite in getting the required support, unfortunately it can be a necessary part of the process. From the moment you sense something is wrong with your child, as a parent, to when you eventually find some answers, you don’t stop. Like Doris, you keep asking and asking until you get a satisfactory response.

A reputable referral is important

And a good place to get one is your child's school. Talk to the teachers and establish if they have observed anything out of the ordinary with your child. Speak to the school principal if need be. While you are at it, have it at the back of your mind that they may be unable to help you, at least to the extent that meets your expectations. Seek a professional opinion about your concerns. Raise them with your GP and hear what they have to say. You may also bring it up with your family and friends, some of them may have successfully dealt with learning disabilities and can provide valuable insights.

Diagnosing a learning disability involves testing, history taking, and observation by a trained specialist. Getting your child checked and examined by one of the following trained specialists is an important milestone in the whole process we have talked about. Your GP should be able to point you in the right direction of the appropriate specialists to meet.

1. Psychologists
2. Speech therapist
3. Occupational therapists

Sometimes, these disabilities may be so complex that it will require several specialist teams working together to try and get to the root of the problems. Even after all this time, Doris tells me that one of her sons still hasn't been accurately diagnosed yet. At least, the doctors have not been able to say definitely; this is what is wrong and put a name to it. And she is very much into the process of getting the necessary help both of her sons need, including enrolling them into the National Disability Insurance Scheme (NDIS).

Following your gut feelings

Throughout my discussions with Doris, I couldn’t help noticing so many instances where she followed her instincts. Aptly signified by how many times she uses the phrase “..., no one believed me.” And every time, she had to keep pushing, keep trusting and following her instincts. Sometimes, you just have to follow your guts - Doris had to.

As a parent, I repeat, no one knows and understands your child as you possibly could. You are the expert when it comes to their affairs. Chances are, if you sense something is not right, its probably not right. If you're worried, don't wait. Don't hesitate to do something, even if people tell you otherwise. In a situation like this, people may tell you "it's nothing" or "just wait, they will grow out of it".

Getting your child’s teachers to agree or share some of your concerns with you can prove difficult as well. Doris never got the expected response to the issues she raised with her son’s school. She recounted one of her meetings with the school where they suggested her son’s lack of social interactions skills was because “he was so trained to be independent and be alone that he was never, ever going to be able to be in a classroom again.” And that his previous school had taught him to be alone and independent!

In essence, if you feel your concerns are being ‘minimised’ - even by your doctor - seek a second opinion. The sooner you find your child the right support and assistance, the better your child’s chances for growing and developing to their full potential. There is nothing like too much help. Besides, look at the consequences if you do nothing.

Find support and help for your child with learning disabilities

As a parent, you must know where to look for help and support, and when to allow it to work for you. It can be tedious and you might not know where to start or what to do. But Doris's experience may provide a few helpful pointers for you.

Doris was able to get both her sons into the NDIS, but not without some challenges. She wasn’t just referring to the eligibility criteria every applicant is required to meet. For three years she has been under the scheme, there was a lot of “back and forwards” as she describes it. She was basically having trouble with who to contact and what to do at every turn. She had no idea what a support coordinator was or how to locate one.

She agrees that maybe the problems she encountered were down to a systemic failure, as her experiences with the NDIS was nothing peculiar. Others have had, and are still having, similar stories to tell. She recounts, where can things get better? "Lots more guidance needs to be done". Doris was sure a lot more can be done by adopting a more streamlined and coordinated approach in engaging with participants. If the relevant parties strive to improve their communication efforts and critically evaluate the helpfulness of the information they receive, we think a lot of those grey areas can be eliminated for Doris and the other parents or carer who may have had experiences similar to hers.

Still a lot of good done by the NDIS

In general, “it's increased their quality of life” Doris says in a nutshell. “I can actually ask for more help or I can have other things done”. She thinks the help she is getting now is all worth the trouble. She has been able to find a support coordinator who she describes as “amazing”. Being with the scheme has allowed her sons to enjoy the expertise of behavioural specialists and occupational therapists in some capacity.

Supports provided under NDIS are packaged as a specialised plan according to each participant's needs. While a lot of funding goes into these supports, thankfully Doris or anyone like her, needn't fund it themselves.

Hope for a promising future

“My oldest son would like to become a mechanic. He's looking into going back to CIT, which I'm very proud of him for that one. My younger one is flourishing, it’s amazing. He's enjoying what he's doing. I think both my boys will be good in the end. Well, I hope.”

Nobody knows what the future holds, but for Doris and her two sons, the present permits them to dream and aspire just like everyone else. It has given them a fighting chance of reaching their potential. And that is all anyone could truly hope for.