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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.

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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]

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