Autism Awareness World Week 2015

Each year we have Autism awareness world week, and it’s here and it starts today, perfect timing as we head into April for autism awareness month. As the name suggests, we aim to raise more awareness and acceptance of autism. 

Autism is the fastest growing disability in modern Britain. 1 in every 68 children are diagnosed with autism. Autism is a life long disability and it has no cure. It’s an invisible disability, you can’t tell just by looking at someone that they have autism. The spectrum is huge and no two autistic people are the same. They may have similar tracts and comforting movements but they all lack skills in their development and understanding the world as we know it. 

I’m a huge autism advocate and I’m extremely proud of my daughter. She is my world along with her two siblings. Autism is a journey that nobody can ever truly prepare you for. There are many positives, many negatives and some life changing milestones on this journey. It’s always going to be filled with bitter & sweet moments. I share all the inspiring moments in our life as well as the bad days. It never gets easy! You get good days, bad days, amazing days and complete horrid days. 

I want to raise as much as awareness & acceptance as I can for everyone on this journey. I’m almost 20 years in on this journey. I’ve been told “I’m brave”, “I’m inspiring”, “I’m amazing”. The truth is, I’m not any of those things. I’m simply a mother. A mother who is trying to do the best she can. A mother who’s heart breaks on a daily basis. A mother who knows her daughter will never grown up. A mother who’s scared for the future of her daughter. A mother who still cries to sleep some days. A mother who at times feels completely useless. A mother who watches her grown adult daughter still behaving like a 2 year old. A mother for who time stands still for her daughter. A mother who has never experienced a real conversation with her daughter. A mother who will never get to see her daughter say I do or have her own children. A mother who knows her daughter will never have a independent life. A mother who so wishes their was a cure! 

So you see it’s not really inspiring at all! In all  honestly it’s cruel, it hurts, it’s tough but she’s my daughter, she’s inspiring!!  I will never  give up on her.  Autism effects everyone living with it. Her siblings have had to grow up before their time, they’ve had to make many scarifies, they’ve missed out on a “normal” childhood. They know more about autism than they probably do anything else. Autism chips away at you each day, as parent it slowly kills you, that’s the harsh reality of living with autism!! 

No matter how tough it really is I wouldn’t be without her. I wouldn’t know what to do with myself, this has become our life and it’s our “normal”. No one truly understands what it’s really like unless you too are living with it. I know it’s because of my daughter I am who I am. Its because of her I have more compassion, more understanding, more humanity. She has made me this way. Without her, I too probably would be wrapped in my own world, where my little problems would seem huge and I wouldn’t understand what real difficulties are, that’s the truth! So you see I owe her so much because of her we as a family unit are better people. As a family we take nothing for granted. As a family we have a amazing bond and unconditional love. As a family we share others joys & sorrows like they are own. We are not bitter at how it is for us. 

We don’t know what the future holds,  but what we do know is that we will continue to be her life line. We will continue to support her no matter how hard or tough it’s gets. We will get through the bad days together, we will laugh together through the good days. We will never give up on her or lose faith. We will love her unconditionally and we will be her eyes, her ears, her voice, her rock and anything else we need to be. Whether she’s 20 or 40 she will always be the baby of our family. She will always come first, her needs are placed above the rest of us. So maybe now you can understand why raising awareness and acceptance is vital & so important to those living with it. I want my daughter to experience as much of the world as she can with out stares or rude remarks. I want her to experience all the things we take for granted, above all else I want her to be acceptanced for the beautiful young lady she is. She didn’t ask for autism but as her family we ask for awareness & acceptance. 

Aaisha, we love you so much and we promise never to let go of your hand. We will do whatever we need to ensure your safe & happy always. #AaishasHope 

Pam Malhi



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Our Sister

Autism.. It matters to us it’s matters that no one treats her any different, it’s important you understand autism. She may be our big sister but actually we’re her older siblings we will look after her, we want her to be happy, to be given every chance to do everything she wants like everybody else! She may never do the things in the way we do them but she has her own unique way and we wouldn’t ever change that.

We don’t want you to stare at her, she has no control over her movements or the sounds she makes, You see when you do stare she smiles back at you because she doesn’t understand hate she only knows love. She’s flaps when she happy she cries when she sad she feel the emotions like we do but just can’t express them like we do. We live with autism and some days it’s hard and some days it’s easy. We’ve never had a proper conversation with her, never shared a secret, never had a pact that we won’t tell mum that secret, we’ve never experienced getting told off by our big sister, we’ve never argued, we haven’t done much as her younger siblings simple because we have to be the older one’s but we love her so very much and wouldn’t change her, Because we live with autism we are better people because that’s what she’s taught us, to have compassion, to have humanity, to have patience and above all to have acceptance of everyone.

To her the little things matter to us seeing her smile matters we hope you too will learn how important autism is to the families who live with it. We hope everyone one day soon we will have autism acceptance & awareness. Our sister is a very special, she’s a gift and we love her very much and autism won’t ever take away our unconditional love that we has siblings share. We will always protect her and guide her. We just want other siblings like us to not have fight for awareness & acceptance. We alone can’t change this but with your help, together we can.

Aneesa & Cameron Malhi

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A New Phase

It’s been a very busy month! Aaisha has been dancing away most weekends so it’s been a great start to the year. However as is the way, when you live with autism, we have to always expect the unexpected. We had a scary hospital dash at the start of the month. Aaisha is going through a phase of holding her breath during meltdowns and then she can’t seem to breath properly. If one of my other children were to panic like this, I could explain to them to take deep breaths through the nose and out the mouth but Aaisha won’t understand this, so off to the hospital we have go in order for us to have her checked properly. I’m actually thinking they should just give us our own room!

All things dealt with and with Aaisha seemingly settled, my next task reared its ugly head, giving me a hard shove back to reality. Aaisha leaves school this July! Now it’s time to face my fears as I search for a college placement for her, a place where her needs will be met, where she has the 1:1 support she needs. Aaisha has been in full time education since she was 2, she still can’t write or read! I’m fully aware that with the severe autism and learning disbility she has, she won’t be able to write a simple sentence or read herself a story but she still has the ability to learn lots of other things. For me it’s important that she has as many self help skills as possible. I won’t always be there to brush her teeth, help her get dressed or feed her. Without thinking what will it be like for her without me, I need to think of not what she can’t do but instead of the things she can be trained to do.

With autism it’s never easy. It can take months or years for children on the spectrum to be able to progress even an inch but in our house we refuse to give up, no matter how hard it gets or how tired we are. Repeating yourself everyday up to 50 times can drive you insane at times but in order to give Aaisha some independence this has to done.

Choosing a college is not something I’m looking forward to. At nearly 20 she could have been at university if she didn’t have autism. I can’t help but have thoughts like these. I’m human and I’m her mother! But she does have autism and that’s a truth I face everyday. I still want her to experience as much as possible In her life. I want her to have every choice everyone else has. I want her to reach for the stars. I want her every wish to come true! Autism may have robbed us of many moments that I took for granted while carrying her but even with autism I shall push her to excel and succeed. Even the little things are huge milestones in our house and they are celebrated. I will never give up on her or be ashamed of her flapping, rocking & babbling in public or private. That is a part of who she is. My soon to be 20 year old will always be my baby, will always need a carer, will always need a hand to guide her. It’s so important that children with autism are fully understood by society and given the same chance as everybody else. Keep supporting families who are living with autism as they are on one of the most difficult & heartbreaking journeys a parent will ever face. As we prepare to face a new journey through college now, we hope she will be happy & settled in this new phase.

Pam Malhi

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Unique Home

I first became aware of Unique Home in 2011 as a charity for abandoned girls in India. They were abandoned simply because they were girls and not boys! As many of you know I have 2 girls and a boy myself, and even with autism, I don’t think of my daughter as burden in fact she’s a huge blessing. Each & every daughter is. I attended the first dinner & dance event in October 2013 in Wolverhampton. This was where I first signed up with delete blood cancer on the stem cell register too.

Having attended this fabulous event it really hit home for me, just how important charities like this are. What if Aaisha was born in India? What life would she have?
How different it would be for her?
It’s a charity that I am a firm supporter of as I truly believe every child should be given the chance to grow, learn and flourish. Unique home provides this care with no state funds, it relies solely on donations and it has done some amazing things for these little girls who are provided with a home, care, love & support.

On Saturday 24th January 2015 in Birmingham UK Friends of Unique Home will be hosting another dinner & dance with a great line up of artists and hosts.
Although the last event I attended I went on my own, this year I’ll be taking Aaisha & her siblings along too. She loves dancing and having experienced one of their events already I know it will be a amazing evening that Aaisha will throughly enjoy. An event where even if Aaisha has her moments I won’t feel judged, simply because of the wonderful aray of people attending. It’s a lovely family affair. So please do join on us… And also see how special events like this are for our family where Aaisha can be Aaisha.

Pam Malhi

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New Year, New Hopes

I watch her throw the lego across the room back & forth, giggling along the way. She looks at me and my heart swells with pride. I see my little girl playing so innocently with her favourite pass time with not a care in the world. I’ve watched this scene played out many times in my life. I’ve felt my heart burst with pride that’s she’s mine. This little girl isn’t so little anymore. I really can’t believe, she’s now 19! Where has time gone?

Autism oh autism how it has robbed me of ever knowing my daughter any other way. We’ve never shared a secret, never had a heart to heart, never shared a tear that we both understood, never shared a joke, never had a gossip, never had an argument and we never will. That’s the reality of autism that I know & live with. It’s truly heart breaking and it doesn’t get any easier. No matter how you look at it, no matter how long you’ve been on your journey, you still have days when it’s destroys your soul, breaks you down, makes you cry and you spend the night awake thinking of the future, a future that you have no idea how bad or good will it get.

On this journey there’s no right or wrong way to parent your child. Every child with autism has different needs, different likes & different ways & routines of doing their own thing. Don’t feel guilty on this journey. Every day is a learning curve and you must remember that you too are on a journey. There’s no text book in this world that can predict that outcome. So enjoy it. Embrace it and learn about this new amazing world that is your life now. Share your passion and be your childs advocate. Only by raising awareness & acceptance will we change the way our children are accepted and loved.

I won’t ever stop fighting her corner. I won’t stop moving heaven & earth for her happiness. I’m her mum. One thing I’ve learnt and it’s took me a very long time to understand, is this: Yes she’s the number one priority in my life. That WILL NEVER EVER change, but I am allowed a night off. I’m allowed to be Pam and not just mum. I’m allowed to have time out and not feel guilty for doing so. So don’t forget this. As parents we do the world for our children but you’re human too. You too are a person. There’s no easy balance. There is no wrong or right answer on this journey. Don’t let autism take over your world, it might not ever leave your life but you’ll learn to make it work though the good & bad days. I did and still do.

Pam Malhi

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Merry Christmas

I see so much on social feeds. We share our joys and our sadness. We support each other and encourage strangers too! Life can be tough at times for all of us. However I firmly believe, If you have your health you have it all, that’s the true reality of life! We don’t take anything with us, we just leave memories..
Life is tough for us all, and we all have a story to tell. I can only share with you all my personal experiences. We’ve shared our autism journey to encourage others to understand what a day in the life of a family living with autism is like in the hope that having acceptance & awareness of autism will in some way make it easier on all of us.
I’m not inspirational or a super woman. I’m just her mum and I would move heaven & earth to make it better, to find a cure.
Just like everyone I have moments of despair, moments of hating this journey, moments I want it all to go away. Like everyone else I moan too! A healthy child is a true blessing. I watched my child hit moments of despair unable to tell me what’s wrong. I can’t explain truly how that feels but all I truly hope for is more compassion and a better understanding of disabilities. Then and only then can we truly make a difference to so many others on a journey they never planned!
When your children are still asking for xmas presents, spare a thought for the parents who would love to have that moment. 19 years in and I’m still waiting for that moment! I don’t know if I’ll ever have it, but we have faith, hope and unconditional love!

Thank you for supporting autism awareness & acceptance. We would like to wish you all a very Merry Christmas and an extremely Happy New Year!

Pam Malhi

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#NotMssng

As a parent of an autistic child I want and need acceptance for my child. I’m the only voice she has. All children on the autism spectrum are extremely special.
We are fortunate to have a vast array of organisation’s around the world who work extremely hard to promote autism acceptance. However, there are unfortunately some organisations who think it’s ok to label our children as having missing pieces! There is NOTHING missing about from my daughter. She is just the way God intended her to be. Can these organisation’s not see, they are actually doing more harm than good?
I’m a huge advocate of autism acceptance and will forever strive for acceptance for my child until my last breath.
Today I ask everyone to truly support autism acceptance and boycott organisation’s that belittle our autistic children & adults.
Autism is a life long disability. It will not simply just go away or be outgrown. What these children need is constant support and acceptance. Nobody asks to be born with autism. Ask any parent who’s living with autism how truly difficult this journey is? As a parent of an autistic child I personally will not tolerate organisation’s who fundamentally believe my child is any less than others. Organisations that go on to publicly state that my daughter has something MISSING, because she is autistic. I don’t normally advocate “naming and shaming” but today I am going to go on record and say,

Shame on you AUTISM SPEAKS.

Today there is a huge Twitter campaign to get the message out there that our children are not missing pieces.
You can read more about this on the link below. Please share your support today for autism acceptance & awareness.

http://autisticadvocacy.tumblr.com/post/104787330327/we-are-notmssng

Pam Malhi

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