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


Eyes On Us

Raising a child with autism is by no means an easy feat. It’s takes great courage and will power just to get out of bed some days, but we do it. We do it, the same as everyone else, for the love of our children.

From the time she was born, I’ve always taken her every where I go, whether it’s a walk to the shops, a trip to Asda or a social gathering. Often these seemingly little tasks take a lot of time & patience to actually get done.

I want her to experience everything that everybody else does. Autism doesn’t make this easy. The anxiety of not knowing what is next, or the idea of too many people rushing around, the loudness of an event, so many little things that most people don’t need to worry about, we do. I’m always checking where the nearest exit points are at an event so should it get difficult, we can leave quickly without disturbing others, to ensure we don’t want to ruin your evening too.

What I find the most upsetting is when people stop & stare at us! You may be wondering what is happening, its human nature to do so but I’m sure within a few moments you would realise that this young person has some kind of special needs. You may not know she has autism as its not a visible disbility, but as a parent trying to help my child with her distress, stopping & staring only adds to our heartache. Dealing with my child whilst there are so many eyes on us will only push her anxiety levels higher. She may lash out as she won’t understand why you are there. If you ever come across a situation where you see a distressed child, my humble wish is, please don’t stare. That parent is already dealing with a public meltdown of her child. You can stand back or maybe ask if there’s anything you can do to help. Give them space and hopefully the moment will pass for the child. If you have children with you answer their questions as honestly as you can.

Just by trying to understand and learn more about autism and the effects it has, we can change the misconceptions about autism. As parents of an autistic child, we know you can’t change our journey but you can help by understanding our journey. By learning and creating more autism awareness & acceptance, together we can make a difference.

Pam Malhi


Magic Wand

I have always endeavoured to ensure my blogs are an accurate, honest and true account about the reality of living with autism. I share with you all the highs & lows. Some may find my blogs very raw, I might hit a nerve but that’s our journey. As I watch my now nearly 19 year old daughter, play happily with her Lego or her Uno cards, I still see my little girl as she was at 2/3 years old. She isn’t. She’s nearly 19 but for me she will forever be that little 2/3 year girl! She’ll never understand our world. She will never fully relate to what’s real and what isn’t.

It’s been a weekend of intense meltdowns. It was tough and I hated every minute of it. There was no smile all weekend. During one of the meltdowns, she threw herself off the bed. I rushed over. Had it been one of my other kids, I would ask, “are you ok?”, “where does it hurt?” I helped her up yet my eyes watched to see if she was standing up straight, had she hurt her legs? Was she holding any part of her body that could give me a clue if she was hurt & where the pain was coming from? It doesn’t get any easier as she gets older. Truth is it gets harder.
She’s now a fully grown women yet she’s a child that needs full time care.

She’s in her final year at school. If we’re lucky she’ll get another 3 years at college. Full time for special needs students is only two and a half days per week!! After 3 years when she’s 22/23 she will be homebound and will need a full time carer. She should be in the prime of life at that age but unfortunately instead hers comes to her stop!! Autism is a totally gut wrenching journey. It’s a journey that has broken me as a mother many times and if I’m totally honest, if I had a magic wand I would make it disappear. I know this is impossible, so for the love of my daughter, I soldier on. I truly believe she’s deserves all the chances that are given to other children. That’s not asking too much is it?
All I want is acceptance & awareness of every one living with autism.

Pam Malhi


The Up’s & Down’s

As a parent of an autistic child, I share with you “our journey”. It’s not always easy writing about the bad days or admit to you that I’m close to breaking point, but I do. Why? Simply because I owe it to my daughter to try and make a difference. I need to ensure that there is awareness and understanding about all aspects of Autism, especially within our community. Too many parents are suffering in silence. They are too scared to say how they feel in case they are judged or worried about what will others say!! If these raw blogs can get the message out to even a few people and I can make a difference to even the life of one parent, I will feel it was all worthwhile.

It can be a very dark & lonely journey living with Autism. You are constantly battling emotions you’ve never experienced with every ounce of faith you have just to get through the day. At times when I watch her play & engage with things she’s loves, how I wish I could feel what she feels, how I wish she could express to me why Lego is so important to her. Is it the touch? The texture?The colours? or even that she can build whatever she wants with it. What is it that makes it so fascinating?

Truth is they are many of my questions that will go unanswered forever. There are things that she thinks or feels that I’ll never know. Thats the reality. Yes, it breaks my heart but I hope that by sharing our journey and providing an insight to our lives, we create more understanding, more compassion, not only for those living with autism but for us parents too. We may not have autism but we live with it each & every day. It’s taken so many of our dreams away but I choose not to be bitter. Of course I hurt but how could I ever be bitter to be given such a special gift.

Through the good days & bad we get on with it but some days I truly wish I could just have her to myself and not have to share her with autism. I’d be happy with just one “normal” conversation, just for her to tell me I’m doing the right things for her. Autism won’t ever leave our lives but I still hope & pray with all the faith that I have, that one day we will have that one conversation, that’s all I truly want.

Pam Malhi


Back to School

With the Summer holidays drawing to a close, back to school time is upon us. Getting her back in to a routine after a long break is always very difficult, but we get there in the end. The summer holidays have been a varied mixture, filled with both good & bad days. We didn’t go away this summer as Aaisha needed important immunisations. We were also waiting on the date for her post 18 education placement, as this is her final year at school, so planning for a holiday was impossible under the circumstances.

For the majority of parents, immunisations are relatively simple. You book an appointment and you go. For us, it’s a whole new challenge. It took us 6 weekly visits to finally get them done. Every week we went she refused to have them done due to her fear of needles. She can’t comprehend the reasons or the importance of immunisations. The nurses too were at a loss as to how we were going to get past this. As she is 18, if she says no, this has to be honoured. Despite the fact that she is not mentally capable of understanding that choice. As her legal guardian however, I do have the right to override her decisions. This is easier said than done when you have a screaming 18 year telling you come rain or shine she will not have the injection. If I personally pinned her down, I could potentially be accused of assaulting my child!
As the parent of an autistic child you have to very often think outside the box. Eventually, It took my niece, who’s she is very fond of, to fly down from Scotland and go with us. She managed to distract her whilst holding her hand and finally the nurse got the injections done!
What a relief I can’t explain how happy I was that day!

It’s the little things that most parents don’t need to think twice about, that we autistic parents have to plan like a military operation & hope and pray to god it works! As she gets older it becomes much more difficult. In the eyes of the law she’s an adult, yet realistically she is still a child. There are certain decisions she will never be able to make. Every decision, every choice is down to me that’s the realty of living with autism. I just hope I always make the right ones, in this journey of autism there are no day offs or wrong & right answers. You just have to have faith, hope & love that it’s going to be ok.

Pam Malhi

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Thank you!!

Having spent the last 18 years living with autism, one of the things that never ceased to amaze me was the lack of understanding about Autism from our very own community.
I have always felt very strongly about the need for a change. Acceptance of Autism within our community is so vital to ensure families dealing with this on a daily basis are not isolated and ostracised. I knew I had to try & make a difference. This is when I decided to open up my life and personal experiences to the world. Simply put, I shared our journey.
Each journey of autism is unique & different. All those living with autism might have a different view or lived a different journey but we all share the same heart ache this journey brings as a parents of an autistic child.
I won’t hide my daughter away, simply because society feels uncomfortable with her body movements or the sounds she makes or her rocking or even her meltdowns. She has autism and this is not her fault!! Her journey through life is hard enough without being pointed at, stared at or others thinking she has some kind of mental illness.

This campaign has been a whirlwind since I started in February this year! I have been overwhelmed with the positive response I have received from so many for highlighting this issue. My dream has always been to ensure I can create understanding surrounding various aspects of autism. I really need the wider community to be able to understand and show compassion to families living with autism by truly understanding how difficult this journey can be for many.

Slowly but surely, I am very happy to say the message has got out there. I have given a variety of press, TV and Radio interviews to ensure the message is received by as many people as possible.

Yesterday I was contacted by ITV Central News who have been following my blog & my campaign to raise awareness about Autism, especially within Asian communities. They were so intrigued by our journey they gave us the amazing opportunity to film us for a news piece.

This will be aired on Monday 18/08/14 at 6pm, ITV Central News (East Midlands)

Media coverage is essential for any campaign and I am truly grateful to all who have helped me achieve this. Although, highlighting our journey via media sources is imperative in raising awareness, just as important is creating a support network. One of my key goals is to put in place a support system, a helpline, an organisation dedicated to helping those on this journey. I want to ensure that there is someone that every family living with autism can turn to. This is NOT just about my family or my daughter. There are many parents struggling on their own. No one should be looked down on or treated any different simply cause they have autism!!

A Huge thank you to ITV for helping highlight this issue. NOW I need Gurdwaras, Mosques, Temples &Community centres to step up & help make the change that is well overdue!!! To everyone who has supported this campaign, please accept my very big heartfelt thank you.

My home town of Leicester have been legendary in their support for this campaign. I can’t make this change alone but with my home town & many others across the UK backing us we can & we will change this. We will have autism acceptance for each & every person living with autism. That is the hope me & my family have.

Pam Malhi

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Being Honest

It’s been an overwhelming few weeks in the Malhi household. Just when things appeared to be running a little smoothly, wham!!!! Everything changes in an instant! We seem to have taken 10 steps back on everything. A few days ago, Aaisha had one of her worst meltdowns, resulting in a late night rush to the hospital. She had worked herself into such a state, she couldn’t breathe properly! In that instant I too just felt my heart drop. My world froze. For a horrible moment, I thought I’d lost her..

This journey will truly be the death of me one day. Sometimes I believe that is the only time when we both will truly be free from this condition. However, this will never be an option. I will never give up. I will not let Autism get the better of us. I take comfort in the fact that I know there will be better days. Autism won’t always ruin the day. The days she smiles & laughs are when I’m the happiest the most. For a few hours, if we are very lucky, even a few days it’s all ok. There are many times I wish we could just talk, how I wish she could tell me what she’s thinking.

I won’t deny that when I see others her age I wonder what she would be like if autism wasn’t a part of her, I also know it could be worse. I know parents who have it worse then me. I pray that no parent has to experience this. For those of us who live this life on a daily basis, we merely ask for a little more compassion and understanding. In the midst of this heat wave she can’t tell me she’s hot, or she wants a cold drink or even if she fancies an ice-cream, such simple things that we don’t have.

I don’t want pity. We just want acceptance. If my daughter is having a moment in the supermarket you’ll understand if I’m in your way, or holding the queue up. If I could make it go away I would but I can’t. All I can do is help you understand the journey we are on & hope by being honest I can inspire others to give every child with autism the same chance as every other child.

This post may not be as upbeat and positive as my others, but I’m human. I’m her mother. I’m being honest and it’s not always upbeat & positive. I’m allowed to get down, she’s my baby, I won’t be beaten but I’m not ashamed to admit that I do cry at the pain this journey brings me on some days.

Pam Malhi

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