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Coping and Living With Learning Disabilities: Above and Beyond

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.

Incre-mental Episode 1 – Overcoming Obstacles with Doris Blowers

In this episode, I’ll be talking to Doris Blowers, a mother of two sons who are participants in the NDIS and one daughter who isn’t.  We’ll be discussing some of the difficulties she faced over the years and how she overcame them.

Transcript

Jonathan: Hello and welcome to the first ever episode of The Self Plus plus incremental podcast, Improve your mindset to become more independent. My name is Jonathan Laloz and I’ll be your host. In this episode, I’ll be talking to Doris Blower’s, mother of two sons who are participants in the NDIS and one daughter who isn’t. We’ll be discussing some of the difficulties she faced over the years and how she overcame them. This podcast is brought to you by Self Plus Plus Mentoring program and online community. Where participants build the mindset they need to become more independent. Visit our website at selfplus.plus.

Jonathan: Doris, thanks for joining us on our first ever broadcast is called Incre-mental. So tell me a bit about yourself briefly.

Doris: Born, raised, have three kids. I have two boys with special needs. I have one with autism. And I have another one with that has a diagnosis that undiagnosed and was still trying to find out what it is. I guess I’ve always struggled with life with my kids. I’ve separated from their father. So there’s a lot to this and a lot of trouble I’ve had with the NDIS.

Jonathan: Tell me a little bit about the story about getting your sons into NDIS. Some of the difficulties you were having.

Doris: First and foremost, because of my oldest son, I found out he had the disability but actually didn’t have the diagnosis yet.

Doris: We were still able to get the NDIS, but I’ve had drafted that crap with the NDIS and I have to be honest.

Jonathan: So what sort of crap did you have to deal with?

Doris: From when I got, I got taken to a meeting and I met with like seven or eight people that helped and supported and everybody else from the background was amazing. But then I give you a bit of paper and they say you need to find your coordinator or you need to find your support worker. But then they don’t help you.

Jonathan: So you had no idea what a support coordinator is?

Doris: I knew nothing about that.

Jonathan: How did you end up finding your support coordinator?

Doris: A lot of work, a lot of back and forth. And somehow I ended up with community services and all that stuff. And I don’t know. I can’t remember how it affiliated together. But somehow I found them. And when I found them, I. I went on with some bloke come when he originally started and he was amazing and he just got the ball rolling with everything. But it took three years. Of NDIS plans with my oldest son to get this to work properly. And I’m still with the plan. They’re amazing, they’ve been great. My coordinate is amazing and yeah, everything good and everything that needs to be done she’s helped me with.

Jonathan: So did you have troubles with getting the evidence you needed to be accepted by the NDIS or was it more after the fact.

Doris: There was more information to my older son in his case that helped me get the NDIS. But it’s now we’ve got to fight for another diagnosis for him to see if we can.

Jonathan: What are some of the things you wished you knew back then, that you actually know now?

Doris: Who to contact, that when they give you when they give you the NDIS and they give you a local area co-ordinator, that local area coordinator helps you. Just doesn’t say, here’s the paperwork, here’s the email. Go, deal with it yourself.

Jonathan: Some more guidance?

Doris: Lots more guidance needs needs to be done. It was horrible what I went through for three years.

Jonathan: Three years? And that just going back and forth

Doris: Back and forwards. No one would help me. And every time the third time I went for a review, the person that did the NDIS review with me literally told me I was not entitled to anything again because we hadn’t used any of his supports. But no one told me how to use my support. No one instigated it. No one helped. No one. They told me I needed this, this, this, this and this. But it’s like, well, how do you do this, this and this and use this.

Doris: If no one will help you.

Jonathan: Do you put it down to a systemic failure overall, or is it just that particular people you were dealing with, do you think?

Doris: The systemic failures, it failed everybody apparently back then and it’s still failing people? I can still hear stories that people are saying that is still not right.

Jonathan: And the level of support before your plan was accepted, that was difficult for you as well.

Doris: Yeah, very difficult. There was no support. No one would help me. No one would do nothing. No one would believe me. No one would. Yeah.

Jonathan: Some of the bigger obstacles for you would be the financial obstacles getting that evidence.

Doris: Yes. Because we had to have tests done or we had to go have tests done. But because I ended up getting all the stuff done with Centrelink to do with a carers payment because I am his carer, because we’d done all the Centrelink paperwork, I then had the proof that it was the disability was there and that how the ball rolled with this.

Jonathan: So going back before even the NDIS came into play, what were the early indicators that you felt something was wrong with your sons?

Doris: Both my sons, my older son always had problems in general, wouldn’t sit still, but then it was my younger one that was my main concern. And yes, admittedly, I didn’t. 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. But because I monitored my older one more than I monitored my younger one and we tried. Didn’t mean to do, but some parents do. I found out that when we wanted to get the younger one tested or wanted to get the younger one checked, no one believed me. So we had problems back when he was in year six and no one believed me and things went crazy and he went crazy at school and no one wanted to help him.

Jonathan: So there are behavioural issues?

Doris: Oh, behavioural but no one believed me. They all thought it was trauma of the separation from me and the partner. But then I found out later on it was the trauma of that. But the trauma triggered it. To come on quicker and harder, it was come up more visible. When the separation happened.

Jonathan: So what led you to believe there was an issue with your youngest while he was at school?

Doris: 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.

Doris: But they wouldn’t put him in the special needs area like an independent learning area. So in the end, what they did is, as it is I don’t like what they did. They literally moved him from the, not like in the classroom, but where you meet where they have the class, where they have to class a little section. And behind it was a little table where the little table was, they set him there and sat him on his own. They’re still monitoring. They still watched him. So then he would learn to be independent, but he never actually had to be involved with the class. And they never encouraged him to be involved with class.

Doris: So that was like a six and then, you know, we had a lot. I had a lot of trouble. I tried to get him tested. No one believed me. No one understood me. So that went down. Then he went to go to high school and the problems continued even more, that he couldn’t cope. He couldn’t sit in class and he got into such a routine that someone actually told me when he went to one of the other special schools, because I finally managed to get him to a special school. But they actually told me at one of my meetings that he was so trained to be independent and be alone that he was never, ever gonna be I’d be able to be in a classroom again, because that’s what the primary school had taught him to do.

Jonathan: So that led to some social interaction issues?

Doris: Oh, he wasn’t going to associate with anybody, he wasn’t spending time with anybody. And he was actually meeting with boys that were being naughty. And doing stuff with them that shouldn’t have been done and make people realize that something was wrong. But no one believed me again.

Jonathan: And so that sort of behaviour is still going on as it stands.

Doris: Since all that stemmed, it stopped it. We managed to get his year 10 with a lot of grief and a lot of trouble. That a lot of that stopped. But at the moment, still a lot of independence, he’s will sit on the console.

Doris: If you could put him in a console all day, he’d sit there. But I’ve tried to pull him out of that, too.

Jonathan: What have you found to be some of the biggest challenges before and after the NDIS came in, so, start with before.

Doris: Oh there’s lots of challenges. No one believes you. No one wants to talk to you. No one understands you. They think you’re just a mother.

Jonathan: What about from your son’s perspective?

Doris: Older one I’m always going to have problems with because of everything. A lot of what he’s dealing with now to do with this disability, I suspect. I might have to. And it’s a genetic thing. And yeah, we found out that it was my brother and my mom and everybody else, but. All that. Yep. And my younger one, if I hadn’t affiliated him with one of my friends, I probably wouldn’t be where I am with him now.

Jonathan: So what are some of the challenges you’re still facing?

Doris: Still trying to get the boys organized or still getting the boys in a routine. Still trying to get him get the younger one up and showered and ready and motivated. Day to day tasks, but that’s day to day tasks with everybody.

Jonathan: And so since the NDIS has come into play, that’s changed them quite a lot?

Doris: Yes. Well, now the old one table to get shoes that I couldn’t really afford because they’re like three hundred dollars a hit and they’re not specialized shoes, they’re just just normal sneakers and boots or whatever? But, you know, they’ve got to be done to fit his foot and all that stuff, so. Yeah.

Jonathan: And so it’s in general, it’s increased their quality of life.

Doris: It increased their quality of life. They’ve increased their help. They’re more. I can actually ask for more help or I can have other things done. And and lately, with everything that’s been happening, they might even be able to get laptops. You know, we’re still trying to find that out.

Jonathan: Tell me a bit about that. You’re having issues with it.

Doris: Oh, yes. Yes, I am having big trouble with that. I think there’s a lot of how do I put it I could pick. I don’t want to say rudely.

Doris: I don’t like some of these situation, but it’s a case of they tell you that you’re entitled to this and you can have this, but then you go to this place and this to place the order for these laptops and they’ll tell you I can’t do it as a sales order, that it’s got to be done as a quote.

Jonathan: So there’s a lot of red tape.

Doris: Oh, there a lot of horrible red tape. But then a lady was standing behind me and she said, I have done this, my dear, and I did do this. And it was done as a quote. And then my plan manager contacted her to transfer it to a sales order. So then the bloke said to me again, I’m going to do a quote.

Doris: I said, no, you need to do the sales order. Yes, it finally did get done. But that was one hour of mucking around that I could have been spending with my kids. There’s a lot of red tape.

Jonathan: And so what what are some of the sources of information that you’ve found helpful in trying to overcome the issues that you’ve had?

Doris: Mine are, because I can contact my coordinator at any time. So you really got to find a coordinator that you can work with. And when I found out that my youngest son was having a review done in the next couple days, I contacted my coordinator and I said, what’s going on? This is going on. This is going. And she said, well, you don’t really have to do nothing. I’ll do all the paperwork. I’ll put all the report together. You just sit back and accept the phone call and agree to all of it. That’s how easy it is now. But it was never that easy before.

Jonathan: So it’s just a matter of you having to find that support.

Doris: Yes. And if you can find someone, it’s amazing.

Jonathan: So if it wasn’t for the intervention of the NDIS, where do you think your sons would be today?

Doris: Probably on a street somewhere. No, I don’t know. I’ve always been supportive of them. I don’t know where they would be. Just the NDIS has made things a little bit easier, made things a little bit harder in some way.

Doris: But in some ways it hasn’t, if you know what I mean. It’s just a small thing for them. We can have behavioral specialists invovled. We’ve had OT involved, but then it’s done. But it’s there. But then they’re working in the background, so you don’t really see them. But they’re training up with the workers that work with my kids.

Doris: So that’s where it’s all different.

Doris: And some of the money that I’ll be watching, going through my plan manager and some of that money to go through it, I think, oh, my God, where would I have found that one? You know, it’s like scary that. If I had to fund all this, I wouldn’t be able to do it.

Jonathan: So what do you see your sons in the future? What what are their dreams and aspirations?

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

Doris: I hope they will be.

Jonathan: Well, thank you so much for your time, Doris, it’s been a pleasure to have you on our first ever podcast, incre-mental.

Doris: No problem. Thank you for having me.

Jonathan: Thank you for listening to the first episode of incre-mental. Please hit the subscribe button so you can get notifications when our new episodes get released. If there’s anything you’d like us to talk about on this podcast, please visit our website selfplus.plus and get in contact with us. Until next time, see you soon.