Adulthood 

It’s been a while since my last blog post, I honestly don’t know where the time has gone. This year just seems to have just flown by!
So Aaisha is back for her second year at college. She seems settled after a long summer break. She has a new timetable this year but has taken to the change well. This year she will undertake a work experience placement which will equip her in increasing her confidence and build on her social skills through interaction with other adults.

Transition has always been a struggle for Aaisha. It’s part and parcel of the daily Autism routine but we expect this and are ready to take up the challenge.

Aaisha turns 21 in November!! As a mother, I am so excited if not a little afraid that this huge milestone has come around so fast! My first born is technically a fully fledged adult! But what does the age 21 actually mean to Aaisha? Her birth certificate is clear testament to the fact that she is officially 21, but with a little sadness in my heart, I also realise that her celebrations won’t be the same as others 21st celebrations.

How old is Aaisha technically? Well that’s actually a very difficult question to answer. Some days I would say she’s actually 5-6. She understands when given simple instructions and follows guidance. Other days I would say we’re back to the toddler stage, where everything just goes above her head. Some days we’re happy and others, just sad & angry. Do I know what kind of day we’re going to have? Well that’s a bit like keeping a umbrella in your handbag because you might think it’s going to rain. You just never know what to expect and to be fair nobody else does either. Does it get easier? No!! I can only share what it’s like for us. Every journey with autism is unique. 

As she gets older and at 5″ 7 she’s a fully grown young woman but still being cared for like a young child. We talk about how difficult life is with autism and how challenging it can be but it goes so much deeper than that. 

I still brush her teeth, moisturise her face every morning and evening. She had started getting in the shower by herself but she can’t shower properly. There are other aspects of her being a young woman that are often taboo and we’re not supposed to talk about. Let’s remember autism is a lifelong development disability but it doesn’t stop your body growing as it should.

In the hot weather I have to shave her legs. Does she care if she has hairy legs or arms? Probably not! Do I care? Yes! Would any other 20 year old walk about in shorts without shaving or waxing their legs? No they wouldn’t so why should I let her walk around like that?

Does she understand her menstrual cycle? No, she doesn’t. Does she really need to have her periods? The simple answer is no! She’s not ever going to have children or get married but I can’t control nature or the way her body develops. That itself presents huge challenges in getting her to understand. How to deal with her hormones during this time is one of our biggest challenges. Buying clothes that she will feel comfortable in, making sure the neckline Isn’t too low because in reality she won’t understand if it is.

Shoes!! She has never worn heels and never will. She still walks on her toes somedays, so trainers or flat shoes that will hold her feet in place when walking are the only things we can buy. These little things prove to be some of our biggest challenges and at times I feel that nobody truly understands how frustrating it can be.

Having a girl on the spectrum presents many other challenges that nobody else might even think about. I’ve always been open & honest about our journey with autism. I won’t be able to fully get you to understand it if I sugar coat everything. Do I think about sexual abuse? Of course,! How would she tell me? Would I know? These are some of the little examples of what living with autism is really like. Some days I drive myself crazy thinking worst case scenarios in my head, but at times you also have to learn to stop before you have your own breakdown. 

What will she be like in the next 5 years? I can’t even predict the next 5 days let alone 5 years. You slowly learn to address issues as they arise. In the mean time all I can do is raise awareness & understanding for those living with autism. I simply hope that it makes others journeys with autism easier, so they don’t feel ashamed or the need to hide their children away. 

Miss P Malhi 

Aaisha’s Hope 

World Autism Awareness Week 2016 

It’s that time of the year again….World Autism Awareness Week begins this Saturday 2nd April and runs till Friday 8th April. 
Is one week enough to raise awareness of autism world wide?? The Simple answer is No! 

Autism doesn’t just go away or disappear. You don’t outgrow it and it doesn’t get any better. It gets harder as they get older and it gets much tougher. Children with autism become adults with autism and are sadly expected to behave like ‘normal’ adults. I wish it was that simple but it truly isn’t. 

These children are fighting a daily battle. They don’t understand the world like you & me. At times it’s a scary and a complex place to be. They want to run away but they have no where to go. They don’t see things the way we do. They don’t hear sounds like we do…. in their world it’s louder with so many things happening at once. They can’t digest that amount of information at once. Their anxiety and stress levels reach breaking point, but believe me they try harder than we will ever understand. If I had to make a comparison, I would liken it to an average British person going to China.. we don’t understand the language, we don’t know how things work, we don’t know which direction we should take, we don’t understand why everyone is in such a hurry, why is everyone running around? Why are the cars all going in the opposite direction? Magnify this confusion by 10! This is a very slight indiction to what children with autism face every time they leave the safety net of their home. 

Believe me when I say we truly couldn’t even begin to understand this, but they do try I can promise you they do try. I see this everyday. I see her trying and she honestly tries so hard. Some days are good and some days we are lucky if we get to the bottom of the road….. but we try and when we fail we try again!!! Please don’t think our children are deliberately avoiding you when they don’t acknowledge you…. please don’t think they’re being rude when they don’t make eye contact….. please don’t think they’re spoilt when they keep asking for the same thing. They are trying, they really are but in that moment they can only do one thing at a time, so making eye contact and saying hello is like & me having a conversation and writing an essay at the same time. It can’t always be done! 

Simple things we take for granted can be extremely difficult for children with autism and at times painful. We don’t have all the answers… we don’t always get it right, but I promise you we do try. I’m her mother and I should know … well to be perfectly honest, I don’t always know. I don’t always get it right. At times I want to know what I need to do to get it right but there’s no manual, no guide book, there no magic wand and there’s no miracle. 

Autism is hugely complex and no two people are ever alike. There are broad similarities but you can ever predict how one of them will react in the same situation. I’m her mother and sometimes even I don’t know what to expect…. I’m supposed to get this right. I’m supposed to know the answers. I’m supposed to know how she will react. I’m supposed to know the triggers, after all I’m her mother, I should know! Well the truth is I don’t always know. There are moments I want run away, pretend this isn’t happening. There are moments I hate myself for getting it wrong. There are moments I feel like a failure. There are moments when I think I can’t do this and there have been moments when I’ve sank to my knees and prayed because that’s all I can do in that moment. 

So you read my blogs, please don’t pity me. Pity isn’t what I need. What WE need is for you to understand our journey and understand how our children are trying… how we are trying. We are trying, oh we are trying to help them with every ounce of strength we have. We’re trying to help make the world a better place by trying to help you understand autism. 

You see the smile on my face but what you won’t know is that I cried myself to sleep last night. You see us happily walking down the street but what you don’t see is the battle I had getting her out the house. You see her socialise but what you don’t see is that my eyes & ears are everywhere making sure she doesn’t see something that could trigger a meltdown. You see us share your children’s milestones & we are truly happy for you but what you don’t see is how desperate we are for a milestone. We listen to your worries but what you don’t see is how we would gladly swap yours for ours. You see what you consider an inspirational mother but what you don’t see is the depths of despair I feel, you don’t see my heart break daily and you don’t see me hating on the world at times. You don’t see the sleepless nights, night after night, most of all you won’t see the pain this journey has brought. You will never see how many times it broke me…. you’ll never see just how many times I’ve hit rock bottom but what you will see each and every day is my smile. 

You can make this smile brighter & better simply but learning more about autism…. helping others understand autism and trying to understand autism as her mother, thats all I need you to do. I promise I’ll do the rest for her….. I’ll help her, I’ll guide her, I’ll encourage her, I’ll support her, I’ll never give up on her and with your help in understanding autism we can make the world a better place for all those living with autism. 

Pam Malhi 

Aaisha’s Hope  

 

Happy Birthday Ayshy 

Dearest Ayshy..

Every year on your birthday I write to you with a secret hope that maybe one day you will be able to read my letters.My heart swells with sheer pride when I look at you. You have come so far and just like any mum, I am ever so proud of just how much you have achieved. I remember clearly that awful day when were given your diagnosis. You were sat on my lap staring in to space holding Winnie the Pooh, totally unaware of what was going on. The news I had just received, shattered my world. I remember holding on to you so tight. I had no idea what it meant for us or how I could help you! I didn’t have a clue how I was going to fix this? After all that’s what mums do isn’t it? They fix it, make it better but how was I going to fix this for you? My precious baby. My heart was breaking. No matter what I did I couldn’t make this go away, no matter how much I just wanted to make it disappear. That was just the beginning of the endless nights of tears, fear of the unknown and anguish, which would soon become a normal part of my life. 

How would this thing they called, “Autism” affect you? I had no idea! No matter how many leaflets I read, no matter how many books I looked at, I couldn’t predict which way this was going to go but I knew one thing for sure! No matter what we were in this together and I would do whatever I could somehow to make this right! I just needed to figure a way out. I made a promise to you and myself that very day, that no matter how bad this got, I would never give up on you. I promised you that I would never ever leave. I vowed never to let you believe that I didn’t want you or wish that you weren’t there. I would not allow myself to get angry. I would not let Autism take over our life. Today I say the same thing to you my darling daughter Ayshy! I won’t give in and I won’t EVER give up on you! I won’t let autism take you from me. 

Ayshy, if I have made mistakes along the way, I’m sorry. I didn’t always get it right. I had to try different ways because you couldn’t tell me which way worked, I had to guess. I Cried when I was wrong, I cried when I was right. So many times I wanted you just to give me a nod or the look to say, “yes mummy, this is working!” So many times I willed for a reaction from you. If I’m brutally honest the desperation to know what you was thinking drove me to the edge many times. Some days you wouldn’t even make eye contact. You wouldn’t let me hug or comfort you. Those moments literally broke my heart. I felt as though I had failed you. I felt as though my promises were falling apart. I felt I was failing you as a mother. I would pick myself up after these days, with a stronger resolve! I was determined that at some point we would make progress. Some day I know you will give me that nod and that reaction that my heart & soul needs so much!

It’s been such a long road, extremely painful, utterly heartbreaking and days were I believed that world would be a better place without us. If I couldn’t get it right for you who else would? But I truly believe God got us through it, after all, I only had faith on my side everything was against us. Slowly extremely slowly we started making progress. It wasn’t huge or life changing. It was slow but I could see a difference. The day you started school you looked so grown up in your uniform. We should have been talking about how great this was going to be, how you would make new friends & learn new things and how lovely the teachers would be that would look after you when I wasn’t there. Instead I was there with visual inputs, hoping you would understand. I wasn’t wrong about school though. Alexandar taught you many things, in fact they taught me many things too. 

We learnt together and it’s be an incredible journey! I’m so blessed to have have walked this journey with my very own little tour guide, the most beautiful little girl that I ever laid eyes on, that was you Ayshy. So we have had good days, we’ve had bad days and let’s be honest we’ve had dreadful days. The reality that you wasn’t going to do all the things little girls dream off hit home. The first meltdown scared me more than it probably did you! I didn’t know how to react or what to do but we learnt how to deal with them too. In fact Ayshy we learnt to deal with everything that came our way. No matter how small or how big it was we dealt with it. We’ve had the same conversations that consist with a few words over & over again. We’ve learnt the same words for years at a time to make sure you fully understand it. We’ve repeated numbers, colours, shapes and anything else that would help you almost every day over the last 19 odd years! 

Ayshy, you learnt words, you even learnt to tell me wether you like things or not. You learnt yes and no in the right context. You learnt to recognise your name and best of all you learnt to say “Mum”. You knew I was mum, I was your mum! I cried all day the first time you said it, you were nearly 6!! I’ve shed many a tear over the years but I don’t cry because I’m sad anymore. I cry because I’m so proud of you and everything you have achieved. Ayshy I know you’ll never know life like your siblings will. I know you’ll always need a carer. I know my dreams for you when I had you will never happen but guess what? What you have achieved is more than I dared to hope for, dared to dream about. 

Ayshy, we haven’t finished yet, we will make more progress, we will achieve more, I will make sure we do. I promise to guide you, support you, push you & do whatever I need to do. I will make sure you get to experience as much as possible. I will make sure you never feel alone or sad. Baby, if at times I annoy you, nag you, push you into counting or repeating words, please don’t hate me. You see one day mummy won’t be here and before that day comes mummy wants to help you understand & learn as much as possible.

  

Ayshy, you have brought nothing but immense joy to our life. Ayshy, you have shown us the real value of life. Ayshy, you have taught us humanity & compassion that maybe we would have never understood. Ayshy, you have taught us patience & tolerance. Ayshy, through you we have experienced faith like you wouldn’t believe. Ayshy, you taught us the real meaning of unconditional love. 

So you see Ayshy, just how amazing you truly are! It doesn’t matter how many birthdays you have. I know you don’t understand age & to me you will always be my baby, but Ayshy don’t ever forget how far you’ve come, how much you have achieved, how amazing your journey has been. Thank you for letting me ride this journey with you! 

Mummy loves you very much, much more than you’ll ever understand & mummy will do everything she can to give you every experience possible. That my promise to you, today, tomorrow and every day, I will do all that I can simply because I won’t let autism take everything from us. It chose the wrong mummy! We’ve got you Ayshy and you’ve got us, together will see it through. 

Happy Birthday Babygirl!! ❤️

She may never.. 

 So after 18 years in the education system school is officially over and off to college we go!

So what has 18 years taught her? She started school completely non-verbal, no words could she utter. She didn’t know her name or even how old she was. She didn’t know colours, shapes, numbers or even sizes. Truth be told she didn’t understand much. 

18 years at school have taught her a great many things. Today she can recognise her name. She may not be able to spell it out or even write it but she’s knows her name. She can count to 10 most days. She knows at least 10 popular colours. She recognises shapes and she’s learnt some words! Of course my favourite word from her mouth is “Mum”. I was never certain my ears would hear those wonderful words from my first borns mouth, but it happened! It was one of the most wonderful moments of my life.

What will college teach her? My hope is much needed life skills for her to be as independent as possible. I’m not expecting miracles. I’m fully aware the progress we have made so far is huge for her & I understand anymore is a bonus and a blessing.

She’s almost 20 years old now! I still have my what if moments. I desperately try not to let them surface too often but I’m a mother after all! What if she didn’t have autism. I often wonder but I’ll never know! I don’t know what tomorrow holds never mind next week. 

The truth is.. I’ll never see her take a driving lesson. I’ll never hear about the first day of college. I’ll never hear about the new friends she has made. I’ll never hear about the teachers she may not like. I’ll never see her change her outfit a 100 times for a night out with her college friends. I’ll never see her date anyone or tell me she’s found the one. I’ll never see her graduate. I’ll never see her say “I do”. I’ll never see her experience the wonderful joy of parenthood. I’ll never see her take her first holiday with her friends or her first all night rave. I’ll never text her and ask her where she is or say to her “wait till you get home”. She’ll never drag me to shops for new clothes or a new phone. She’ll never brush her own teeth properly. She has never been able to wash her hair or even pull out an outfit she wants to wear. I’ve never shared a secret with her and we’ve never had a pact. I’ve never even been given the chance to argue with her. We’ve never had a real conversation, we’ve never laughed at the same joke, we’ve never shared a bit gossip but we share many things that are priceless. We have an unbreakable bond of unconditional love. She can read my face and I can read her eyes. This our connection that I know she understands. So the list of I’ll never see her, will go on and on and on… But the one thing I know she’ll never feel is unloved. You see I may not have got what I was expecting but we soon learned to adapt & adjust the sail of our ship to the winds that were blowing our way. We wasn’t prepared to sink, even though life threw numerous sink or swim situations at us.

This is my daughter, Aaisha! She is the most affectionate person you’ll meet. She’s quite funny and loves joking around. She has compassion and doesn’t like seeing others upset. She’s just the most amazing young lady I know. Despite having autism, which lets be honest she probably doesn’t even know she has let alone understand it, she doesn’t moan and she doesn’t complain. She doesn’t ask for anything, she never demands. Meltdowns, bad days and days from hell, well that’s the autism not her, not who she really is. You see beyond the diagnosis she’s human just like you and me. She has feelings, she just can’t express them. She has emotions, she just can’t show them. She wants to understand us but often she finds this difficult and frustrating.

Autism doesn’t go away and you don’t grown out of it. It doesn’t get easier as they get older, in fact it gets harder, but no body tells you that. Yes as a parent it is utterly heart breaking. To most people she looks like a “normal young adult”. In reality my young adult is still my baby, still a toddler who needs constant supervision, still needs guidance, still needs her hand holding, still can’t let her out of our sight. 

So when I’m writing these blogs, I’m not asking for pity! I’m hoping that you’ll understand more about the impact of living with autism. I hope my blogs can help educate others. There are many parents like me out there. They have the same thoughts as me, the same heart break, the same pride for their child. All parents of autistic children have the basic right not to feel isolated. To feel that they can take the child where they want without fear, just like every other parent. We just want you to understand our children better and tell your children why our children are the way they are. It’s not them, its autism. You can control or tame naughty children but we can’t cure our children. Oh I wish we could but we can’t! If you can understand autism for us that’s all we ask. 

Miss Pam Malhi

Aaisha’s Hope  

 

School Is Over 

So my Angel has now completed school. It’s been an extremely emotional time for us all. It’s a bitter sweet moment, 18 years of education and my baby still can’t write her name. Will she ever be able to? I simply don’t have the answer to that, Just like a huge range of other unanswered questions. Does she understand she’s going to college? If I’m totally honest, the answer is, No, she probably doesn’t. Will she get to grips with the the new 3 day a week routine? Only time will tell. 
I’d like to think she will understand it’s a new era and it’s not school. I hope she settles in well and enjoys her time at college. I remember her being placed in specialist nursery at just over 2 years old and here we are at nearly 20 saying goodbye to that chapter of schooling. 

I’m actually beginning to think how this will affect her. The routine won’t be the same. The people won’t be the same. Starting college is daunting for anyone let alone Aaisha. She will never be able to tell me what she really thinks of this new place or how her day was. Oh how I would do anything to have those simple conversations with her. Even though I’ve know her future would be different and she’ll never be independent, it’s still so very hard. Some times I catch myself watching her playing with Lego or the uno cards and can’t help wonder if autism wasn’t apart of her, what career path would she have chosen? Or she could be driving by now and seeing whatever she wanted in the world. Would she be dating? As her Mum it’s only natural I guess that I think and feel these things. How will I feel when others her age are getting married and starting a new life? Knowing I’ll never see her as a bride.. 

Autism truly is cruel twist of fate but I can’t change any of it and I simply don’t know her any other way. It might mentally exhaust us some days but we will never let it take over her life or ours! There may be many things she may never do but through us she will live her life to the fullest. We will give her every opportunity to experience the things we do and along the way we will continue to raise awareness & acceptance of autism.  

 Pam Malhi

Aaisha’s Hope 

College Is Here 

Aaisha was 2 years old when she entered the education system. She was placed in a full time specialist nursery in the hope it would bring on her development. A year later, aged 3, she was diagnosed with autism. Now, at nearly 20 she’s leaving school. 

She still can’t write or read. Some days we can count up to ten others days we can’t. Some days we get the colours right other days we don’t.

Searching for a college placement has been hard. It was imperative that I could find her a placement that would fully meet her needs and provide 1:1 support where she could continue to learn & shine.

I always knew this was a decision I had to make for her. For the past 18 months however, I couldn’t help thinking over and over again, “I shouldn’t have to chose her college, this should be her choice.”

Then the answer hits me bluntly again. The stark reality that she can’t make those decisions about her life, just like many other decisions she’ll never be able to make. When she was younger I used to think it would get easier as she got older but who was I kidding? It gets harder. 

Words alone can not express just how difficult some days can be. She is now a grown adult, 5ft 7in tall. Looking at her just sitting there you would never guess there was anything different about her but it’s important to remember that autism isn’t just a physical disbility. As her parent I’m solely responsible for every decision I make for her and I pray I always make the right ones. From difficult ones such as college to simple ones to what she’s wearing every day. Even buying shoes can be difficult. Are they comfortable? Are they rubbing against her toes? Will she be able to walk in them properly? The tasks & decisions are endless. 

The thought of college does scare me if I’m totally honest. How will she makes friends when she has such limited speech? How will she react seeing so many new faces?  

 How will she understand this is college and not school? College for young adults with special needs is 3 days a week. For the past 18 years she has had a routine of 5 days a week of school. We now need to establish a 3 day week routine. This will be hard. We begin transition next week with me taking her in. I’m allowed to stay for a few hours and then hand over her care to teachers. It’s a huge change for her & us. I truly hope she settles in well and is happy in this new phase. 

What happens in 3 years when college comes to an end? I don’t know! What I do know is, that for me personally, residential care away from home is not an option. I don’t know how autism will impact her time at college. I know it’s never going to go away, I also know it could be a lot worse. Children with autism eventually become adults with autism, they don’t simply just out grown it. They become Adults but with child like minds. These young adults deserve the chance to experience life as we know it even if they never fully understand it. Please continue to support autism awareness, together we can make the world a better place for those living with autism. 

Pam Malhi

Aaisha’s Hope 

A New Month 

So April has come to an end just like every month eventually does, but oh what a special month it was. As many of you know April was Autism Awareness Month. For families living with autism however,  it simply doesn’t end in April. We live with this each & every day of our live’s. We don’t take anything for granted as we never know what the new day with bring. Living with autism is a life changing journey and no two days are ever the same. We simply just don’t what each day holds for us but what we do know is that this is forever our world. We have no cure but we do have hope, faith & love and that alone carries most of us through each day. 

No one can tell you exactly what this journey is, simply because no one truly knows. Everyone’s journey with autism is different. No one on this journey has it easier than anyone else. We all deal with emotions. We all think about things that no parent should have to.We are all just doing the best we can. You see the smile but look deep in to our eyes and you will see our pain. 

It’s vital that we are all fully aware of autism. It’s important to us and our children that you understand not only our journey but our children. Just because April has ended don’t forgot about those that are living with this each day. Please continue to support and learn about autism. Together we can make such a difference. I personally would like to thank each and everyone who has supported autism awareness. We are truly grateful to you all! X 

Pam Malhi 

#AaishasHope