I am a special needs parent

DR RADICA MAHASE

HI, my name is Ayesha. I am a special needs parent and I am exhausted. Last week there was a lot of talk about mental health and I realised that so much of what everyone was speaking about was about me. I struggle on a daily basis to make things work. I worry every day about my child. I feel hopeless. I feel helpless when I think about my child’s future. I feel like I am ready to give up.

Earlier this year, I was at my lowest point ever when my son was sick and was hospitalised. The doctors in the hospital physically restrained him to do some tests. He was traumatised. It’s been six months and he’s still traumatised. He gets scared when anyone comes near him. He hides behind the bed if someone comes to visit.

I feel so helpless. I thought I was getting help for my child, but instead he has become this frightened, traumatised little boy. Since that horrible experience in the hospital I have to constantly reassure him that no one will hurt him. It breaks my heart and I am exhausted.

I don’t want anyone to feel sorry for me. I don’t want anyone to feel sorry for my child. I don’t want pity. I wouldn’t change my child for anything in the world.

But at the same time, I am exhausted and I need some help but I feel hopeless because I don’t know where to turn to for help.

I don’t want anyone to give me handouts. I am physically capable of earning a living and taking care of my child. But in order to do that, I need to know that he is safe while I am working. That would only happen when I can find a school for him where I know he is comfortable and happy and his needs are met. As long as he isn’t in a school I have to stay home and take care of him.

I just want access to opportunities that will make his life and my life a more enjoyable one. I don’t want to feel helpless.

I don’t want to feel like I am begging anyone for anything but really and truly I am begging. I am begging those in power to put things in place so there will be opportunities for him, so that he can learn things and grow up to be able to take care of himself. I want the people in power to say to me: ‘Look there is this place where your child can get therapy to help him as he grows up.’

You see if I am not working then I cannot afford therapy and he doesn’t get the help he needs and the situation becomes more hopeless. I don’t want to go through the rest of my life feeling helpless and hopeless because I cannot provide for him.

Last week when everyone was talking about mental health they kept saying that it’s okay to not be okay at times. But is it okay to not be okay most of the time? So many people kept saying it’s okay to reach out to someone for help, but who do I reach out to?

I won’t pay for counselling for myself because that money could go towards therapy for my son. They talk about self-care and how it’s important to look after yourself. But who is going to look after my child when I am looking after myself? The fact is I need to be there for him totally and as long as he is with me, there is no real break for me.

Everyone is so quick to talk about mental health, but it is all talk. Nobody is actually putting things in place to help mothers like me. If they really wanted to help they would reach out and offer counselling to people who need it so badly.

When I hear all this talk about you must take care of yourself, get a break, do things for yourself, you can’t take care of others unless you’re mentally healthy, and it just makes me feel even more hopeless because I don’t know how to start to take care of myself. Whatever resources I have are for my son not for myself. I am exhausted.

Note: Anyone who is interested in offering free counselling sessions to parents/caregivers and siblings, please contact us at 791-1320.

Dr Radica Mahase

Founder/Director, Support Autism T&T