Taboo Topics: Living with Disability/Special Needs – meet Rebecca Benn [Dyslexia]

Being a dyslexic:

Hi there, my name is Rebecca Benn, and I suffer (although I find my condition to be a blessing) from a learning disability or syndrome called dyslexia. The dictionary defines my syndrome as a developmental reading and spelling disorder that occurs when the brain does not properly recognise, transmit and process certain symbols, whether these symbols are letters or numbers. What this means for me is that as a 20 year old I have the reading age of a 12 year old and that when I write letters, although I mean to write or type a ‘d’ I may end up writing a ‘b’ or a ‘p’ or a ‘q’ or even a ‘g’, this can happen with many letter and even some numbers. It also means that I hear word sounds (mainly vowel sounds) totally different to normal people, so you may write business but I will write buissnes. On the face of it you may think that this does not sound that bad, but the syndrome is so much more that, my thinking pattern is totally different to other people, also I have to deal with some other issues because of my syndrome that are not related to learning, like a paralysing fear of the unknown. This fear means that I will stress about anything new in my life, whether that is learning something new, doing something new or being somewhere new.

Growing up:

“Stupid” or “dumb” were the words most often used to describe me, kids can be very cruel and although I always knew I wasn’t (thanks to my great family), I often felt both these things. It was my mother who first saw that I was different, she could see that I was learning things in a different way to my siblings and in grade 1 my parents had me tested by an educational psychologist despite the fact that my teacher told her that she was just a neurotic mother and that I was merely a slow child. Up until grade 9/10, school was probably one of the worst things in my life. The educational system in South Africa just doesn’t cater to children who need to learn differently. The most irritating thing about school was that I knew I was intelligent, and even though I understood concepts, I just couldn’t put them down on paper in a coherent way whether it was in english, math or any other subject. However thanks to some dedicated teachers, and the most amazing mother (who even home schooled me for 2 years to help me deal with my disability), I made it through and found a place to stand tall in grade 10. I came to see that my disability took nothing away from my intelligence, it only added a unique perspective to the world. I realised that if I didn’t accept myself others wouldn’t. Although I have come to understand and even love my disability, I am not over it, and even though I have improved I will never be rid of this syndrome. Each day is a challenge, but I will continue to accept the challenge and strive to learn from it and use my experience to help others like me.

So if you what to help me or others like me, you may want to remember these things.

Please don’t:

• think or talk to me like I am someone of a lower intelligence level, I actually have a quite a high IQ, I just have trouble putting it down on paper or reading it out to you.
• try and fix me or come up with solutions to my problems. I know you may just want to be helpful but unless I ask for your help or see you as one of my support system I may see your attempt to help as offensive.
• call me out in public (whether in person or on a social media) about my spelling or reading abilities. Although I have lived all my life dealing with people embarrassing me its still a lame thing to do.
• Please don’t tell me you know how I feel, and that when you where younger you had a little bit of dyslexia. Because you didn’t, dyslexia is not something you have and then get over, it is a life-long struggle.

Please do:

• Lend me your help if I ask for it
• Ask me as many questions about my syndrome as you wish.
• If you think you child may have a learning disability get them tested and then get them the help they need.

[To read some other stories from people living with disabilities and special needs, click here]

 

Taboo Topics: Living with Disability – meet Lauren and her son Noah [Learning Disability coupled with ADD & Auditory Perception Difficulties]

I am a mom to a child with special needs. This is not something we were prepared for or ever expected. Noah looks like a normal little boy and his disability, for want of a better word, is not visible. It makes it easier and infinitely more difficult for him. Because he is not visibly disabled there are no allowances given for what he battles with every day. He is labelled as naughty, undisciplined, disobedient and a daydreamer. Noah has a learning disability coupled with ADD. He also has Auditory Perception difficulties.

Here is his story. Noah arrived two months premature after my waters broke due to an infection I did not know I had. His prematurity meant that he had a big delay in milestones. It put him in the high risk category for learning difficulties and behaviour problems. That he left the hospital at all is a miracle. One of the worst things I was ever told was that my beautiful boy would need extensive therapy to ever be normal or to walk properly.

This was told to me not in love but in spite by someone who should have known better. I have developed a much thicker skin over the years but at that stage I was very distressed. Please be careful what you say to a mom whose child is slower or different. We love our children just like you love yours. We are very sensitive to criticism and as we ourselves are learning day to day about our child’s ability, don’t make statements about their future when we ourselves have no idea what tomorrow may bring. Just love us and our special children, support us and if you do not know, ask. We sometimes just need a shoulder to cry on.

Noah has never suffered with the health issues that premmies have but he battles with a number of learning difficulties. We are fortunate to have had an excellent paediatrician and Grade RRR teacher, both of whom helped to identify learning difficulties early on. While Noah is physically healthy, emotionally he functions at a younger age than his peers. He is impulsive and has little concept of delayed gratification. He gets frustrated very easily. He doesn’t stop to think of the consequences of his actions which has led to some hair raising near death escapes. It also leads to huge discipline problems as he does what he wants without thinking of the consequences to both himself and those around him. He also has a hair trigger temper which he finds nearly impossible to control when he loses it. I am the mom in the shop whose child has to be carried out shrieking his head off.

He has an auditory perception disorder, which means that while he is perfectly able to hear you, he battles to process what he is hearing. He will often ask us to repeat what we have said a number of times. He battles to understand what is being said in a group. If you do not look at him when you talk he battles to understand what you are telling him to do. He also assumes that if you are not looking at him you do not hear him. If there is any ambient noise, like the radio, television or people talking he also battles to understand what is being said.

He has attention deficit disorder, a label which is bandied about and which does not sound too bad until you live with someone who struggles with it. ADD means that he battles to concentrate on more than one thing at a time, he cannot follow orders if there is more than two steps in the process, he is easily distracted by anything and everything around him. He battles with low muscle tone, balance, poor pencil grip. These all make basic activities such as eating, climbing a jungle gym or learning to write difficult. Please do not just take for granted these things if you have a normal child. They are a huge blessing.

When we finally had a name for what Noah battles with and we had to face the reality of putting him in an LSEN school, it was a huge blow to our family but also a relief. It took my husband and I a very long time to work through the reality that our son was not “normal”. It was a period of grieving for me as I had to put aside all my dreams and expectations for Noah and come to realise that we now have a new normal. His sister also bears the burden of a brother who is different. She gets distressed when he loses his temper. She compensates for him and helps him when he cannot understand something. She is very patient when he has taken so much of our attention and has also had to grow up a little bit faster than necessary.

We are a family who were not given a manual when our special son was born and so mostly we learn as we go, all of us making mistakes as we learn how to parent Noah and he learns how to live with this package he has been given. He is in a special needs school. We have no idea if he will ever be able to mainstream. We are told that his problems may improve to the point where he will be able to go to a “normal” school. But they may also not improve or he may never be able to function in a mainstream school. He battles to function in his day to day tasks and this may be something that will always be part of his life. We are so grateful for every milestone reached. For the first time this year his report card said that he was average. I cried. Average is so much better than getting 0’s or 1’s.

Please, stop before you label a child as naughty. Get the facts straight. As parents of a child who does not conform to society’s standards of normal we are doing our best to raise our special son and he is doing his best to deal with the package he has been given.

Thanks,

Lauren

[If you would like to follow more of Lauren’s crazy journey, you can head on over to her blog at seasonalsanity.blogspot.com]

[To read the story of Shaina Cilimberg and her struggles with Aspergers Disorder, click here]

[To read other stories of People Living with Disability, click here]