It’s been a good few weeks in the Malhi household. We have had some truly amazing moments. Last week Aaisha counted up to 10, all in the right order! I can’t tell you how many millions of times over the last 18 years we’ve tried counting to 10! Last week she did it! I couldn’t hold my tears of joy. One day 10 will become 20. We will never give up trying. The last couple of weeks we have seen her speak many sentences very clearly. The big cheesy grin, has not left my face. These are little milestones for some, but for us, these little accomplishments are ground breaking and huge.
It’s the hope and faith we share on this journey of autism that’s brings us this far. We refuse to accept defeat, we refuse to believe she can’t or won’t. These words do it exist in our little dictionary. I will not let them.
As her mother, I’m fully aware life will never be “normal” for our family. What is “normal” it’s just a dryer setting isn’t it? What we have is unique. We treasure these moments as if she’s just graduated with full honours! That’s what they mean to us. So if you see me repeating the same word, the same sentence, the same letter over, over & over again you’ll understand why. In the hope she’ll get it and know how to use it. I could have had her learn sign language but I refused. Like any parent I want to talk to my daughter. I want her to engage with us and more then anything I want to hear what she has to say. It may not always make any sense to others, but it does to me and that’s all that really matters.
We often get told autistic children don’t have emotions. This is simply not true. Recently I took her to the cinema. We watched a highly emotional film about the Sikh Genocide in 1984. The film reduced me to tears at certain points and my daughter started crying too, whether she fully understood the film I simply can’t answer but she felt & saw my tears which made her cry too! Autistic children may not say a lot but they still have feelings. They express them in the only way they know how. Just because they have little or no words it doesn’t mean that they don’t have anything to say.
From when she was diagnosed to where we are at now, has been a very long long road. I can only describe it as the biggest emotional roller coaster of your life. Highs, lows, good days, bad days. Then there’s the devastatingly hard days, days when you feel like autism has literally ripped out your heart. You can only hope and pray for the good days. The truth is you just don’t know what could trigger a bad moment. That bad moment will ultimately lead to a meltdown. We may have had an amazing few days prior to the dreaded meltdown, but when they happen, you can’t help but feel you back to square one. As a parent of a autistic child you just step up and start all over again.
Any child diagnosed with autism will become an adult with autism. There is no cure. There are numerous therapies, tactics & resources that you can use to help your child. What works for one child will not always work for another child. Every child with autism is unique they are all individual’s so please don’t assume they are all the same because believe me that is not true. If you ever meet or come across a child with autism then you have met ONE PERSON with autism.
Autism has become an intricate part of all our lives. Just how we brush our teeth each morning, Sometimes there’s too much on the brush, other mornings not enough. Some mornings you can’t work out why the tube isn’t letting any toothpaste come out and then other times, it’s empty. This is the same with autism. You never know how the day will pan out. I don’t always have the answers or the tricks to put it right. All I do is the best I can to assure she is happy, settled, safe & I truly hope she knows how very much loved she is.
Autism has taken many of my dreams for her. I’m fully aware they will be so many things she may never do. So many experiences she’ll never share. Many thoughts she’ll never express. So many unspoken words between us but it won’t ever be enough for me to give up or stop trying. I will fulfil her every want and need. Together we will experience the world, I do this by entering her world. My daughter has autism, she may not have many words and she won’t always make eye contact with you. She won’t always understand what you say or ask her to do and she won’t always sit still. She may not communicate with you at all, but that does not give any one the right to ignore her, belittle her or call her names. My daughter didn’t choose to have autism. This was the card we were dealt. Its not about the cards you were dealt but about how you play that deck of cards! And believe me I could play autistic poker with both eyes shut and still win hands down.
As a parent I share our journey to help raise awareness & acceptance of autism. I hope your paying attention and your understanding of autism is growing. When you share stories of your children hitting all their milestones, first day at nursery, first nappy free day, first night of sleeping through, first word, first steps & watch them grow on their journey of life just remember there are parents that are 10, 15, 20 even 30 years in to their wonderful journey of parenthood that are still awaiting these moments and hoping for moments that in their hearts of heart they know, might never come.
I don’t begrudge anyone who gets these wonderful moments as I’m blessed I got to experience these with my other two children but it still doesn’t heal my wounds for my daughter. It doesn’t make it any better. I’m extremely blessed and I truly believe that with all my heart. Aaisha is my first born and she will always be that little extra special. So the next time I shout and cry about a little thing, a little milestone that you may not even give a second thought to, I hope you’ll understand our joy of this moment, a moment that perhaps we thought we may never have seen.
Autism awareness & acceptance is hugely important to us parents of autistic children. Simply because we want our children to be accepted by society just like yours are. We want our children to experience things just like your children do. We want to take our children to the park without the fear of other children laughing or pointing at them. We want our children to be able to walk around freely without be stared at. We just want you to treat our children like you would any other child. Our children are just as special and loved as your children even with autism. We too want to experience these magical moments with our children without the world judging our child.