A few years ago there was period where I found myself constantly feeling drained, exhausted and tired even after sleeping for hours – it was just so irritating. At one point, I preferred to stay at home, gorge on junk food and lost all interest in things that once brought me joy. It was inexplicable. There were days I went shopping, bought tons of things that I didn't even need and later cried a river in the car for no real reason. My spouse and I would have huge arguments over little things – I always wondered, why? Being oversensitive about little things was common. One day I sat down to introspect and that eventually led me back to my twin’s autism diagnosis. I hadn’t realised how the continuous stress and prolonged overload of responsibilities had deteriorated my mental health. Yes, mental health; the topic that's so important and least talked about in the world of parents of kids with special needs. I was so extremely busy settling my special kids and looking after their daily needs that I forgot myself and my mental health. If these things aren’t addressed at the right time they will surely lead to other health issues too.
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As a parent, I feel we ignore ourselves the most. That's the worst thing we do to ourselves. The immense outside stress does hit you internally and that too very badly. Your mind is trapped in a maze of thought. There is a plethora of ifs and buts. Socialising becomes a nerve-wracking process with special kids and if you’ve left them at home, you can’t stop thinking about what they are up to. For most parents, summer vacations mean traveling, staycations, meeting friends and lots of dine-outs. With us special parents, these things are like climbing Mt Everest or surfing in an open sea with no navigation. Attending birthday parties are not about cake and conversation, they are about maintaining focus – keeping an eye on your child so that he doesn't destroy anything. Vacations make you more drained and exhausted than just staying at home would. Mostly though, you are haunted each night with the same question as you drift off to sleep: 'What if I don't get up tomorrow?' It's a nonstop physical and mental battle.
Sitting with your spouse eventually leads to discussions about savings and how to be more financially stable. Your marital relationship also becomes special after you have special kids. You have your own little world, which has the two of you, your kids and the nonstop worry and stress you have for their present and future. I believe parents need to have a special bond to survive this life as a special parent otherwise both will succumb to the nonstop never-ending stress.
We no longer have very frequent family outings or hang-outs with friends; for a while, it was very frustrating. Eventually, we decided to split it; everyone goes to meet the family, we go separately to see friends, and with very close friends who are very understanding we take the kids along.
You need to remember that it's not a matter of a week or a few months. It's a long-life battle. And if you are not at your best when it comes to your mental health you will not be able to survive. Your survival is vital because you want to be there for your children as long as possible ... it's all connected.
Here are few things that helped me to maintain my sanity and a healthy state of mind:
Vent, then vent some more: This is the key to remaining sane. Talk to friends, parents or siblings, you will feel better. Venting doesn’t only mean talking, you can write in a diary if you want. Talk to yourself too; it might sound crazy to you but sometimes it does help.
Talk to other parents on the same journey: Nothing will make you feel lighter unless you talk to a parent who is on the same journey as yours. You will instantly connect, feel the pain and relate to the same struggles. And, you will support each other too. It's just beautiful. No one will understand you better than a fellow parent. I know many such couples and I just feel a lot lighter when I talk to them on days when I am feeling down. They are always there to give you suggestions and help you out in difficult situations.
You are a special parent and that's not less than a superpower in itself. You are doing the maximum you can for your child because you love them.
Quiet the inner critic: You are a special parent and that's not less than a superpower in itself. You are doing the maximum you can for your child because you love them. This guilt of not doing enough is going to jump out at you every now and then. The inner critic will bother you at times that you aren’t doing enough. It's you who must quiet it. Tell yourself every day that you are doing the maximum you can do, and you won’t stop it ever.
Take a break: You deserve it. Be it a walk outside, dinner with friends, a movie, Netflix or just a lazy day where you do nothing and let everything be. Don’t forget you are a human not a machine.
Take help: You are very lucky if you can get help. Grab it with both hands and enjoy some time off.
Keep a hobby: I am sure everyone has a hobby but after our kids are diagnosed, life is all about them, and our hobbies and interests get lost somewhere. Keep your hobbies alive just to feel like yourself because our hobbies define us. Like, for me, it's cooking, it works as an antidepressant for me.
We time: I call it that, time with your spouse. It's not physical intimacy I am referring to. It is just sitting with each other, cherishing the good times, drinking hot chocolate/tea, watching your favourite movie or just talking when the kids are sleeping peacefully. It's also very important because no one will understand your struggle as much as your spouse.
Don’t wait for other validation: Believe that you are doing the best with whatever resources you have available. Don’t let anyone pull you down. Don’t wait for others to tell you that you are doing well. You need to decide, what’s more important, validation from the people around you or own sanity and family? Once you set your priorities and boundaries it will be easy for you to function.
Seek positivity: If you look around to find positive people you will find them. Society is a harsh place to survive as a special parent but there are still good people out there who will understand and be nice to you and to your kids, too. Look at them and don’t focus on those who roll their eyes at you and criticise you.
There will be good days too: If you are having a bad day, have faith that there will be good days too. Remember the night is the darkest before dawn.
Focus on the present: That's the key to having a normal life as a special parent. Don’t worry about something that is not in your control that you can’t see. Work hard on the present to have a better future. Worrying about the future is natural but overdoing it will bring nothing except fine lines, wrinkles and a lot of hair fall.
Help others like you: That does make you feel better.
Don’t compare and be realistic: Because it won’t bring you anything but sadness and irritability. Remind yourself as often as you need to that your life is different and your journey as a parent is unique. Stay focused. Don’t see what your siblings' children brought home on their annual day, look at what your child achieved in therapy that week or in school.
Take medical assistance: Don’t ever feel shy about your own mental health. Talking to a psychologist or psychiatrist can be very helpful. Don’t delay that meeting if you think nothing else is helping you.
Love yourself and your kids: Being a special parent is a tough job but don’t forget that you mean the world to these kids who have no idea about their condition. Love them and be proud of being their parent. You are no less than any parent out there. You are a warrior, a superhero in your child's life till your last breath.
Quality of life is dependent on mental health. A happy parent is going to raise a happy child. If you think you are sinking into depression or there is this anxiety that won’t leave you, don’t feel shy to contact a healthcare professional. It's difficult, I know, but you got this! You are not a common parent; you are a super parent.
- Dubai-based mum of three, Ambreen Suhaib has two kids on the autism spectrum
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