May Special Needs Parents find HOPE. The following may make parents of neurotypical children want to know more about their neighbours, cousins,friends or colleagues who have Special Needs Children.
WHO AM I?
I am a 32-year-old woman with a variety of experience in this world ranging from being a student, researcher, traveller, trainer, thinker, guide, philosopher, friend, sister, wife and a mother too!
My name is Fatima and I don't fit in any of the pre-made boxes designed by the society, be it religion, region or ideology. Boundaries suffocate me, freedom liberates me. I am like sand, the tighter you hold, the sooner I will slip away.
INTRODUCING MY SPOUSE
My husband is 34 years old dedicated loving and doting father. He plays many roles, a friend, a parent, a fantastic spouse, a critic, a mirror and a cheerleader too. V is my partner in everything!
HOW MANY KIDS DO I HAVE?
I have one child. He is 4.9 years old.
WHAT DO WE DO FOR FUN?
It could be as simple as sleeping in together on a Sunday afternoon to lazing around to mall hopping to treasure hunting restaurants to visiting the park to dancing together to playing silly together. Anything together is FUN
WHO IS THE STRICT PARENT?
The word 'strict' means nothing to us. We must be firm and assertive when needed to assert boundaries, we must guide our children to help them understand the 'why' behind things, once the 'why' is clear, the how and what fall in place. We never play good cop, bad cop. We want our child to see us united as a team. If the child understands that mom and dad are together no matter what, he or she trusts the parents better. If my husband and I have a disagreement, we sort it in our child's absence, at least we always try to. As a parent, it is important to trust the spouse and not try to prove who is better. We are equal and capable in our own ways.
WHY IS MY SPECIAL NEEDS CHILD SO SPECIAL TO THE FAMILY?
It came to our knowledge that our child is on the Autism spectrum a year ago. Life has changed since then, I can go to the extent of saying that the day we realised he is on the spectrum is his birthday for us because it changed everything, he was born again for us because this time we felt better prepared for him. Not that we pampered him or treated him differently. We learnt to respect him and his needs consciously. He is special to the family because he made us good people, patient, understanding and tolerant. He is the reason I as a mother, am at peace with life, because he showed us that life is nothing if we aren't happy with the little things, that usually people take for granted. He gave us rainbow coloured glasses to wear and now the whole world looks colourful to us!
WHAT ARE OUR CHALLENGES?
Challenges are many and regardless of the child being on the spectrum or not, parents always have challenges. Some of our challenges are the same as any parent and some are a bit different. If I should just list them out, it is too long a list but some of the immediate things we have on our plate are, oral sensitivity (feeding), socializing, ADL (Activities of Daily Life). In the long run of course, access to good educational institutions seems like a distant dream and this is a challenge for most parents. Our kids are constantly being discriminated by the education sector.
My child's grandparents have been close to him since birth so yes, breaking the news to them was a challenge we had foreseen, yet due to the way we approached the matter helped us make things very smooth. We also wanted to inform all our close friends and extended family members and it was somewhat a challenge to explain to them the intricacies.
Schooling was always a challenge, he got pushed out of many schools indirectly, none of the regular school teachers were equipped to deal with him and this was before we knew he was on the spectrum. We tried various setups to see what clicks, nothing did. All we got was complaints, suggestions, judgments, unsolicited advice, and blame for making him unsocial, unfriendly and spoiling his life. It was a very tough time for us, very low days;
days and nights of thinking what did we do wrong, where things took such a bad turn for us, how far back do we go to understand this issue, who do we turn to, to get a perspective without judgment? As a mom, I blamed myself for everything he could not do, it was the worst phase of my life. No parent wants to ever feel responsible or guilty for anything wrong in their child's life.
HOW DO WE OVERCOME THEM?
When we found out our child was on the spectrum, it was as if the dark clouds moved away making way for the sunrays! We now understand, the cause of certain behaviours, certain patterns, fears, fixations, OCDs in our son's life. It helped us find ways to help him, and support him better. We did not put even one minute in to denial because that would only mean more delay in the support he deserves. We read, read, and read, we watched, watched and watched, material on autism, the various traits that fall in to the spectrum. The more we gathered the more we could relate to him. And we could now see how beautifully he has been communicating with us all this while.
We wrote emails to friends and some family members sharing the complete story, with links they could visit to read and watch some amazing yet simple videos to understand autism. We wrote a long letter to my husband's parents to help them understand their grandson better and they responded beautifully, they felt really connected to him for the first time. All his grandparents, uncles and aunties, have been such pillars of support for us, our friends joined us in any way they could to help us and even spread awareness.
Social media played and continues to play a big role in overcoming challenges we face and thanks to social media I found a special school for my son where we began play therapy at the exact age of 4 years. It has been about 9 months we have been going there and he has adapted to the school and the routine now. The therapists are great source of strength and work with us together towards the same goals. Our family is getting a lot of support from my son's special school on desensitizing his oral defensiveness, and in terms of ADL, my husband and I are working towards it at home. We have made ourselves part of some excellent home-schooling groups and we are gaining knowledge as a family on home schooling. There are some great government schools in the city and we are working out a plan to see how we can make use of the available resources. We haven't carved the exact way forward but we are putting the pieces together.
Collaboration is must in overcoming any challenge in life. Parents, grandparents, friends, sisters, brothers, neighbours, colleagues, and every other person that we encounter has something to offer and we need to be able to identify that and work together, there is no harm in asking for help. We have always asked for help and we have been blessed to receive it in many forms.
One favourite memory I want to share with others: There are so many of them and it is hard to pick and choose! I will share the most recent one where we attended a carnival and it had 'Segway rides' (Segway is a motorised two-wheel scooter where we can stand and ride). It needs a great deal of balance and we had no way imagined that even our son would like to try it out! It was such a fun time, all three of us tried it one by one and we felt like three kids!
WHAT DO I HAVE TO SAY TO OTHER FAMILIES WITH SPECIAL CHILDREN?
Every child is different, every parent is different, every family is hence very different from each other. So, to each their own. However, if I must say a few things that may apply to everyone is,
* Know your child is different, don't treat them differently
* Treat your child with a lot of respect and as an individual with thoughts, ideas and opinions.
* Listen to their silence. There is always a reason for everything they do or don't do.
* DO not test them every moment in their life. It is easy to go down the path of constantly checking for their knowledge because they don't give us verbal or physical outputs all the time. But please don't. Do not make their life feel like a long never ending exam.
* Conversations are not just questions. Speak to them as if they understand everything and sure they will. Share experiences with them.
* Do respect their sensory preferences
*Slow down, come to their pace, their level. Remember you are what you are after 30 or more years of practice. Give some time to breathe
* DO NOT GIVE UP ON THE SPOUSE I write this in capitals because I want to yell on top of my lungs to all special needs families and remind them that your child is very important in your life but not everything is your child. You are a person too, respect yourself and your needs too. Nurture all those relationships that existed before the child came in to your life too. Moms and dads should not forget, neglect, ignore each other because the best you can do for your child is to love each other, respect each other. Together you can beat the odds.
* Involve family and friends, as much as you can, remember you weren't born prepared for anything. There should be no ego in asking for assistance and answer their questions if they are genuinely interested in knowing your child.
* Take breaks and do not feel guilty. A happy, content, energetic parent available to the child a few hours a day is better than a frustrated, tired, self-pitied, dissatisfied parent present 24 x 7
Lastly, think of it as taking a picture through a camera, if we focus on the right things, everything else blurs out. Find what it is in life that you want to focus on every day and get just one thing right a day. It is good enough.