When Parenting is a Lonely Affair

Parenting a child with a disability is not easily understood by many. I do not blame them. It is quite inconceivable, the kinds of things we run into. It is truly beyond logic and reason, yet it exists.

I was trying to explain to some parents with kids of Sophie’s age, the troubles Sophie encountered at school. Their view is that all kids go through reprimands and scolding by teachers all the time, and I should not be so protective of my child. I agree, but that is not the point, when the child is picked upon because of his or her disability.

I am beginning to find it difficult to connect with parents of regular kids. There isn’t much I can talk to them about, my kid develop quite differently from theirs, and has different experiences. Being with them makes me even more lonely and differentiated.

If this is how I feel, I can’t imagine what Sophie is going through. I can have interests other than just parenting Sophie. But Sophie can’t stop being Sophie! All her experiences will always be different from her peers, and she will also be differentiated.

Sometimes I feel alienated even from my own family members. While I know they mean well, I feel they do not quite understand what it is really like parenting Sophie. I can’t tell them off, but it hurts like hell.

I feel happy when I am in the company of those who knows and understands. But these people are few here in Singapore. I relish my days spent in Sydney, and I will miss their support. I do take comfort however in the knowledge that they are but only an email away.

The Nightmare is over … Will another begin?

The school year is finally over, what a relief! We almost didn’t make it through. The school was tough on Sophie. It was almost as if they were tough because of her impairment, not in spite of.

Sophie was literally driven to the edge. I almost lost her. Not getting support from the school is one thing. Having obstacles put in our way, every direction we turn is another. It was subtle, but the effect was devastating.

She was picked on, yelled at, and ridiculed. All because of her disability. She could not complete her work like her peers, she was slower, her handwriting was untidy – this was made known to the school when she first joined, and repeatedly thereafter. Why pick on her now?

Without the necessary accommodation, she cannot perform like her peers, so she scored the lowest in the class for some mock exam paper. Was it necessary to mock her in front of the whole class? Isn’t this an attack on her disability? If she could top the class for that paper, would she still have an impairment? I think not!

We’re glad it’s all over now with that school. She’ll be moving on to secondary school next year, a different school. While we looked forward to the change, it is not without apprehension. What if …? I dare not think.

Why is Sophie being punished for her disability? She didn’t ask for it. Why does she have to suffer more than the impairment itself? It is not as if she has committed some heinous crime.

I feel sorry that the school, and especially, the Principal, could not show a little more empathy to students with disabilities. I am sorry that while they are in a position to influence young minds, they will only impart intolerance.

I have a feeling that this is not quite over for us. Sophie will have to continue to wage the battle against prejudice and discrimination. And I will fight on with her!

The Book is OUT!

A reference for teachers and parents of children with visual impairment.

Copies available at NIE Bookshop at $6.50 per copy. You can also email me at layhong@live.com.sg to place your orders.

Driving

Someone from Ford Motors (USA) wrote a comment and gave a link to a youtube video on driving for the visually impaired. Such an inspiration, and I have to show this to Sophie, and share with everyone else! What a dream come true, even if it is for a short time. Wonder if Sophie can participate when she’s older?

 

Blind Man Drives Ford Mustang

Speeding Without Sight

Blind Behind the Wheel

What Irony

I have been approached by schools to help in including students with visual impairments in their schools. They go to great means to ensure I get to meet the relevant teachers, Allied Educators, Counsellors, etc, and even arranged for the parents to meet me as well. They follow-up with my recommendations, and write to me for more information or clarifications whenever needed. Such care and concern for a single student with visual impairment in the school is greatly commended.

Sophie is in a mainstream school, and I have on many occasions tried to speak to the teachers, and to recommend ways in which they can try to include Sophie in the activities. None would give me the time of day!

Isn’t that funny? I am going to be a trained teacher of students with visual impairments, and I am being recognised for this role I will be playing. I am happy that I am able to help as many students as possible, and even happier to know that schools are now beginning to recognise the need to get specialist help to include their students with visual impairment. But, I am unable to do likewise for my own child.

Sophie is miserable and not learning to her best potential because her teachers seem not to be concerned with her specialised needs. So long as she gets extra time and enlarged papers, they feel her needs are adequately taken care of. When I tried to offer to speak to them and show them other ways of helping Sophie, they’re not very keen. They don’t even bother to get back to me after I have made an offer.

So while I do my best to ensure other children with visual impairments get the best out of their education in mainstream school, my own child suffers. What irony!

Thank goodness for friends!

Sophie just shared with me an ingenious way her friends and her worked out for an inclusive badminton game during PE lesson. In the past, she would be advised by the teachers to ‘sit out’ during games which she could get hurt, badminton being one of them.

When Sophie first learned that they would be playing badminton during the school PE class, she begged me to get her a badminton racket and a shuttle cock to practise with at home, so that she can join in the fun at school. To her great disappointment, she was asked not to take part, as she could be “accidentally hit by a swinging racket”. She came back home, shoved the racket and shuttle cock into the darkest corner of our storeroom, and never mentioned it again.

She was full of excitement when she told me about how her friends tried to include her in their game of badminton. They will let her serve the game ball, and then she will move back to allow the game to continue. Once a while, her friends will ask her to try and hit the shuttle cock. When she said she can’t because she can’t see it, they just told her to swing her racket all over “like crazy”. And she did, and actually hit a few shots! She was so thrilled!

It doesn’t take very much to include children like Sophie during PE class. What her teachers failed, her friends succeeded, and so well. They actually tried to make sure she had her share of the ‘fun’, and included her in their game. They were tolerant and accepted that she would miss the shuttle cock, but that was not the main thing. The main thing was just to have fun with your friends; winning was secondary.

It was heartening, listening to Sophie, and I could feel the excitement and exhilaration at being part of the game. It has also taught me something important:

If we were not so intent in winning, and more focused on having fun, we would be a lot more acceptable of others who may not be as good as us, regardless of whether or not a disability is involved.

Sophie’s friends also showed us that children, with the right exposure, are a lot more inclusive than adults. Teachers have a lot to learn from their students, and how they include their classmates. I am thankful that Sophie has made some wonderful friends who has accepted her as one of them, and includes her in their fun activities.

It’s Living the Life that’s Scary

We do what we can for children with a visual impairment. We teach them literacy, and ensure they are able to navigate the information superhighways. We teach them how to move around, how to take care of themselves with independent living skills. We prepare them for an adult life. Is that enough?

For Sophie who is slowly losing her vision, it is the realisation that one day, she would be living a totally different life, that of a blind person with hardly any functional vision left, that is really scary.

I can prepare her with Braille, with skills to use the computer, to go on the internet, etc., and to do things for herself and get around independently with orientation and mobility. But I have yet to prepare her for living a life as a blind person.

It is different, now, when she still has some (though not very much) useful vision left, and with us  (her parents) around. What would  it be like when she’s all grown up, an adult and on her own. Much as I would like to be there for her throughout her life, I cannot. Honestly, I am  as scared for her as she is of herself. I keep asking myself, “Can she manage it?”

It isn’t just these so-called skills. She can learn them all. Is she mentally and psychologically prepared for that eventuality? How would her emotions take her?

There is nothing I can do when I am gone. I can only make sure she has all the skills to survive. But I know I also need to take care of her emotional well-being. But it is so difficult to talk about it. I can’t say “It’ll be alright” because honestly speaking, I am not sure if it will really be “alright”.

This brings to mind what she said to me some years back. It must also be in an earlier post somewhere here. She said she hopes she’ll die before I do because she can’t imagine what it would be like for her to be living without me (or her dad). What can I say? What should I say?

I don’t want to paint a rosy picture when I know very well there will definitely be issues of adjustments and coming to terms with it all.  …and it pains me to know, that I won’t  be there for her when that happens…

I’m Still Not Prepared!

School has started, and Sophie walked home as we have agreed. At around 2pm, the sky looked overcast, and there were rumblings. I feared it would pour, and I don’t think Sophie brought an umbrella along in her bag. So I set out to meet her halfway, hoping to get to her before the rain. As the drops of water began to fall, I hastened my footsteps.

I wondered how she would react when she sees me. Will she be mad, and accuse me for not ‘trusting’ her to walk home  on her own? I was so busy with my thoughts, I hadn’t notice her approaching. Of course she wouldn’t have noticed me.

I stopped suddenly when we were about a metre apart, I didn’t dare approach lest she gets angry. She looked up in my direction, and proceeded to walk past me. I was not more than 2 feet away from her, and she didn’t recognise me. That poor, is her vision!

I had known, or thought I knew, all along that her vision is deteriorating. But it take moments like this to really hit home that I am still totally unprepared for what is to come. If I hadn’t called out to Sophie and identified myself, she would have simply walked passed me, not realising who I am.

When I called out to her, I wanted to hug her so tight, but I refrained. Sophie wouldn’t have appreciated a scene, not in public. And I didn’t  want to upset her further since her brief breakdown just a few days ago. But I was totally torn inside. I fought back my tears, as we walked home in silence.

I had to justify my presence. The dark clouds above were my reasons. She accepted, but reminded me not to worry. She’d pack an umbrella for the next day (and she did just that the moment we entered the front door).

This walk home may seem very trivial for most people, but knowing what Sophie is unable to see, it is tremendous effort by her to complete it. Unable to see approaching cars until too late, I worry for her safety. But I know this journey is important for her. It gives her a sense of independence and confidence.

Despite knowing all this, I know I will never be prepared for what is to come. It will still hit me really bad when I finally realise there’s hardly any vision left in her eyes anymore. But I hope and pray that her will and determination to live her dreams will never leave her!

What Wonderful Parents and Teachers!

It was a great forum yesterday! Despite the inconveniences and discomfort – temperature taking, contact tracing information, and mask wearing – everyone there was enthusiastic.

This post is dedicated to all those parents and teachers who braved these inconveniences to come and listen to us! We also managed to link up with new parents, who have not heard of Beyond Vision. A very warm welcome to them! I hope that together, we can find strength and hope, as we take on this special journey with our children. I am so happy to have been able to reach out to these parents.

There were parents whose children are only infants, not even a year old. There are also parents of children who are still in preschool, and parents whose children are way into formal schooling. Yet all of us have a common objective in our lives, to find out ways we can help our children with visual impairment lead a normal, independent and fulfilling lives. I salute these parents and I respect their love and concern for their very special child.

There were also teachers there – from mainstream schools, SNOs, and special schools. They too make the extra effort to be there, although there was no need for them to do so. But they were there because they care enough for their students with visual impairments! I too respect them for their concern for their students!

I am glad for the opportunity to be able to share what I know with everyone at the forum yesterday. There is much to do for children with visual impairments here in Singapore, but I believe we can do it. Together we will be able to change our children’s lives for the better! Let’s work towards that!

Passing Off

Sophie was ‘off’ the CCTV for a few weeks now. She gets angry when I mention it. Sometimes she says she doesn’t need her worksheets to be enlarged! Something’s not right!

Sophie’s ‘passing off’. She wants to be ‘normal’ like any other kids. She doesn’t want to be different or appear different. She hates it when people comment about her vision, and how she looks at things. She feels hurt when her school mates laugh at her for being different. She hates being different!

So she tries to be like anyone else. And whenever I mention the CCTV and any visual aids, she gets upset because I just reminded her that she’s not ‘normal’.

I can’t tell her that it okay to be different. No, that’s not okay to her, and it will never be! I cannot brush her feelings aside and pretend there’s nothing wrong. But I needed to let her know the dangers of trying to ‘pass off’ as a ‘normal’ person.

In refusing to use her CCTV and other aids, she’s putting herself at a disadvantage. She has mis-read prints and got her work wrong not because she couldn’t do it. I told her she’s not showing her best!

Worse, what if she gets herself hurt because she tries to ‘pass off’? Will she still want to use her cane, especially when I’m not around? Can she negotiate stairs without aid? She might have a nasty fall and get seriously hurt.

I don’t know how much of what I’ve said have registered. But I did tell her I do not want to see her get hurt because she tries to be ‘normal’. She’s growing up, and at the age where acceptance and being ‘in’ is important. It may take a while before she accepts herself as she is. I just pray that in the meantime, she remains safe!