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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Happy Birthday Aaisha!

19 years ago today I received one of life’s greatest gifts and I became a Mother. My first born literally took my breath away from the first moment I laid eyes on her. I truly had no idea about the journey we were about to undertake. All I Could see in that moment was my beautiful baby girl and the fact that she was mine.
I couldn’t have imagined the roller coaster of emotions I was yet to experience and how my life would completely change. It was no longer about me! God blessed me with my beautiful baby girl, Aaisha. There were times when I didn’t think we would see another birthday, times when I didn’t know how we would get through the day, there were days when I couldn’t find the answer. The simple truth is I didn’t even know the question.

With every passing year I see progress,
each year I see a change, each year I see how far we’ve come against the odds!
In the last 12 months I’ve shared my daughter with the world to help educate and raise awareness of autism.
The gift of a daughter is truly a very special one, but a gift as special as Aaisha is an extremely blessed one! She’s changed my whole life, my mindset and she changed me as a person. Today she turns 19, she has no idea what age is or how old she is, she is more excited about the pink Lego she’s been showing me for months! She’s brought so much joy in to my life, she’s taught me true compassion, she’s taught me what real love was, she taught me the true meaning of life! She’s given me more then I could ever give her..
Autism is a part of who she is but it’s not all she is. She’s funny, she’s full of affection, she’s beautiful, she’s pure, she’s an inspiration, she’s an amazing young woman.
There may be many dreams that will remain just dreams for her.
No doubt there will be many more soul searching moments, many more tears of laughter & heartbreak, many more difficult days and many more moments when I hate autism & the pain it’s caused us. The one fact that remains constant is that I am so very proud of her & no matter what tomorrow brings we will always hold her close, always guide her path, always fight her corner, always be her voice & always keep her safe and happy! I owe it to my amazing daughter to try and make a real difference to the world. That is the legacy we hope to leave. She has taught others to truly understand autism. She’s inspired many others to help raise awareness of autism, yet she doesn’t even understand how special she truly is!

Aaisha I’m so proud, blessed and humbled that God chose me to be your mother.
19!! Where did the years go? Baby, I wish you nothing but happiness. I wish that god gives me the ability to fulfil your every dream, meet your every need & always make the right choices for you. I wish you will always know how very much loved you are. I wish you will always know how special you are! Above all else, no matter how heartbreaking or hard at times our journey has been, I wish I get to be your mother in each lifetime I’m granted. I wouldn’t be without you, I wouldn’t ever be complete without you. Get ready to be spoilt, pampered & lots of pink Lego…

Happy Birthday Princess!! You are the true definition of unconditional love, you are the reason my heart beats, you are what makes me, me! I owe you & God for all that I am!! Your going to have an amazing day I promise!! May Waheguru always bless you and guide me on our journey together through life!! We will never let go of your hand, We will hold it forever we promise. Love you more then words could ever express!

All our love always & forever
Mummy, Aneesa & Cameron xXx

Pam Malhi

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The Reality

If I am totally honest, I could cry my eyes out. She will be 19 soon. She should be out making her mark on the world. She should have been driving by now. She should be at university, telling me about her dramas instead she’s locked in a world that’s only hers. It’s never going to leave us. There is no cure.

Some days behind the smile, I’m falling apart. It kills me inside. Imagine never being able to have a proper conversation with your child? She can never tell me what’s on her mind or what’s bothering her. I know she’ll never fall in love , get married and have children. She’ll never experience the unconditional love I have for her. She’ll never drive. Never take a walk to the shops on her own. She’ll never venture into the world we live in! She’ll never experience the little things, butterfly’s in her stomach, her prom, her first date, her first girly holiday, her first job.. The list is endless.

Sometimes I wonder why I put myself through the endless torture of even thinking about it. I know it’s never going to change. I’m always going to have to hold her hand and guide her in every step she takes. Sometimes I think, when she asks for drink she will drink whatever I give her! It could be poison, yet my baby would still drink it, simply because she doesn’t understand. That thought always scares the life out of me. What if I wasn’t there to protect her? In my moments of pain, I want God to tell me that it’s ok. When I’m gone she’ll be ok. If that’s not possible I beg him to promise me we will both go together.

Some days my hurt is very deep. If only you could see inside my heart, it is so often full of despair. I will never ever give up on her. I shall do whatever I can so she too can experience life as we know it.
Being a parent of a autistic child can be compared to being stabbed over & over again. Yet you still find the will to carry on as your broken heart is of no significance. Keeping the smile on my beautiful daughters face is my number one priority.

Pam Malhi

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