I wish I had the faith of my seven year old. When she prays incredible things happen time and time again.
My daughter is so special but so fragile. God has his hand on her in a very special way. Naomi has autism. She has huge anxiety and her twin brother has a genetic condition with complex needs as well as autism. To help ease her anxieties she carries little toys with her wherever she goes, including going to school.
A week ago today her twin brother was due to go to hospital to have an ambulatory EEG machine fitted to monitor his seizure activity. Naomi was more anxious than usual that day and clung to her toys in her pocket as she walked to school.
I left her at school and headed up to hospital with her brother Isaac. It was traumatic for him and for us and we headed home with him all wired up. Naomi was collected from school by her gran as we were not going to be home in time.
I came home to her in tears. One of her precious toys has been lost. She was distraught and I felt so helpless. I could not just go to a shop and replace it as her brother could not be left unattended and she knew this. Nothing could make things better and she cried in my arms. My heart was broken for her.
As she dried her tears and her breathing settled she quietly looked up at me and whispered
“It’s ok mummy. I have prayed. God will bring me back my toy.”
My thoughts turned to how I could make this happen. I did not want her heart to be disappointed but more importantly I did not want her faith to be shaken. I am her mum, but I can not be God. I looked into her beautiful blue eyes and saw her heart of faith.
“Naomi, you are right. I believe with you.”
And that was that. She had prayed.
As I continued to watch her brother closely we started homework with a total peace. She lined up her toys leaving an obvious gap where her missing one belonged. I knew she would not sleep tonight with that gap there but she just assured me God would bring her toy back.
She did her spelling and her reading with her heart of peace intact. She smiled, she laughed and she carried on as normal.
Then the door bell went.
“Mummy, that is the Angel God has sent with my toy.”
Have you ever seen an angel? Do you think they have a halo, wings and dressed in white? My daughter knows differently. There on my doorstep stood a neighbour I only knew by sight.
“Hi, this may sound strange. On my way to work this morning I found a plastic toy on the ground. I picked it up and wondered if it belonged to your daughter. I don’t know you but I put it in my pocket and took it to work with me. I am on my way home now and just thought I would knock your door and ask if it belonged to you.“
My daughter danced with excitement. I cried.
I don’t know what my son faces but I know God is with us.
I don’t know how my daughter will cope with a future with autism, anxiety and living with a twin with complex needs but what I do know is that God has his hand upon her in a very special way.
God cares about a plastic toy for a seven year old and God cares about you.
I will never forget the day one of my neighbours became an angel to my seven year old.
My dear friend,
It was just after my children had returned to school after the long summer holidays. The weather was still decent and the house quiet, yet I had no motivation.
Summer with two children with autism had drained me. There just seemed to be nothing left of me to give. I sat on the couch with a cup of tea and logged onto social media. It was my escape.
All you did was start a chat.
“How are you?”
I was fine. Of course I was fine. I was just tired after seven weeks of non stop coping with my children day and night. I adore my children. They were now back at school and routine was re-established so why would I be anything else but contented, happy and relaxed.
We chatted briefly for a bit while I scrolled through pics of smart children in uniforms, smiling selfies and the usual other tweets and statuses. Today I was just not feeling it for some reason.
I was exhausted. I convinced myself that was it. It was the change from having a noisy, chaotic house for seven weeks to having silence. It was the lack of sleep that comes with having children with autism. It was the one too many meltdowns I had dealt with. It was the isolation of summer. It was the facing another school year of my son still not speaking. It was the thought of another term full of meetings, forms, homework, appointments and even more meetings. It was the anxiety of wondering how my children were coping with huge changes and the thought of how they would be when they came home and we had the brunt of all that stress. It was wondering how to reconnect with my husband who I had barely had a chance to speak to for seven weeks alone. A mix of everything; that was what was wrong today. Tomorrow I would be fine.
An hour or so later, and still sitting on that sofa, my doorbell rang.
Of course it was you.
“I’m worried about you.”
So we chatted face to face for a bit. I just needed a down day I told you. Let me catch up with some sleep and get my house in order and all will be fine. Maybe I just need to get my hair cut or something? Perhaps a bit of retail therapy would get my spark back?
“Perhaps you should go see your doctor?” You said.
Why would my doctor want to see me? Antibiotics or painkillers won’t help me. I don’t feel ‘ill’?
“You may be depressed?”
Who me? Really?
I called the doctor in the end, if nothing else just to get you off my back.
Thank you for pushing me. Thank you for caring enough to reach out to me. Thank you for noticing me struggling.
Yes, you were right, I was depressed. I never expected that. Maybe you did? Maybe you were able to see something I couldn’t?
I am not sure if you remember that day as much as I do? It was seven months ago now but it changed my life. The doctor gave me tablets and I am so much stronger, more motivated and happier now.
One day I may be well enough to come off them. For now the stress and strain of everyday life with two young children with autism means I need them. I am not ashamed of that. Why should I be?
I am just ashamed I never sought help sooner.
I will never forget you my friend. I have not seen you in person for a while now but you were there at the right time and I am grateful for that.
You taught me to look after myself. You also taught me that sometimes love and care means stepping out when you think someone is struggling.
I just want you to know that I am looking out for others now just as you looked out for me.
You taught me that sometimes others can have an insight that the person themselves can not see.
You taught me that friendship and social media can be a way to spot things in others and help them.
You were more than a virtual friend, you were there when I needed you.
Thank you again.
I really hope all is well with you and yours.
In gratitude forever,
One of your social media friends.
My son was running away from me in the supermarket yet again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park I noticed a stranger was gently holding his shoulder.
“Is he yours?” she asked as she saw the sweat appear on my forehead.
“Yes”, I puffed as I once again held his wrists.
“He has autism and he is heading right for the car park lift. Thanks for your support.”
“I knew right away he had autism. You can tell.”
If I was given just a small amount of money each time someone told me something similar I would be rich.
My son has the type of autism that is NOT a hidden disability.
So what makes his difficulties and diagnosis so obvious?
Is it the fact he flaps and stims CONSTANTLY? I really means constantly! He can not sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is impossible to NOT notice it. His body movements are not hidden.
Is it the fact he can not talk? That may seem like something you would think would not be noticeable but to hear the noises he DOES make it is pretty clear to most people that these are not noises you hear everyday. His noises are not hidden.
Is it the fact he screams? He can scream longer than a fire alarm and more high pitched that a whistle. He screams randomly and inappropriately whenever he feels like it. There is nothing hidden about that in any way.
What about the fact he is still wearing nappies? As much as I try not to show this he thinks nothing of pulling up his top to chew or pulling at his trousers making it obvious. He has no social awareness and no understanding. Yes he could be incontinent for any number of reasons but combined with his noises and movements it adds to the number of reasons why people realise right away upon meeting him that he has autism.
He runs, he flaps, he obviously has learning difficulties, and he behaves quite differently to other children his age. He is sometimes in a wheelchair for his own safety and if I have not got the energy to run a marathon while doing my shopping then I often use a disabled trolley for convenience.
He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He is entertained for hours just watching lift doors open and close and open and close over and over again.
He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either. In fact he flaunts it.
People see him and people see his autism.
Sometimes they don’t react very well to that. Other times, like the beautiful stranger today, they see a child with obvious difficulties and look out for him.
They comment, they look, and they react because my child has the type of autism that is NOT a hidden disability.
For many who are not as severe as my son I understand why autism can be a hidden disability. But it isn’t true that it is a hidden disability for everyone.
I fell in love with my children long before they were born. I will never ever forget that moment I first held them skin to skin. There was a bond that I felt could never ever be broken. I felt they were a part of me from the moment I found out I was pregnant. I loved feeling them move and kick and hearing their little hearts beat at every check up. I was connected to them. Our worlds were one and we would always be close.
Then autism entered my family.
That is not my sons fault in any way. I don’t resent him or blame him but I, as his mother, need to work so much harder to connect with him.
He lives in another world to me and I admit I have,at times, cried over that. I want that bond we had when I first held him. I want that special connection of looking at his eyes and seeing into his soul. I want to hear his voice, cuddle him, stroke his hair and share life with him.
He prefers to look out windows, flap at lift doors and laugh at hand dryers.
Some days we are like strangers living in the same house. I meet his needs, he does what he wants. I create a routine and he follows along just because it is what we do here. Eye contact is fleeting, often non-existent. Words are never used. Body contact is on his terms and never conventional. When we try to understand each other it is like we speak in different languages or live in different planets. I try my way, he tries his way and often we both end up upset.
So when moments come along I throw caution to the wind and go for it in any way I can.
Today while on a train journey he sat beside me and we had some physical contact that did not mean climbing on my head or hitting me. We just sat beside each other. That was it. I felt like I was right back there the day he was born looking down at him filled with love and wonder and pride. A short moment in time when our worlds met and our hearts collided. Unity.
Later on as we got off that train and headed back to the car he did something so rare it took my breath away. He reached out and held my hand. Touch brings healing, restoration and love. He sought me out. He knew who I was and he wanted to know I was there. He did something other parents take for granted but something that is rare in my world. A short moment; two worlds coming together, no words needed.
Tonight as I bathed him, dried him, and met his physical needs I knew our bond was different yet still strong. Unlike his sister who spends bath time chatting, sharing and playing, he spends it simply splashing and retreating into his own world.
I read him his story, the same one I always do, but tonight there was no vocalising, or flapping, or pointing. Those little moments of coming into my world today had tired his mind and his emotions.
The irony is he is so fiercely independent yet completely dependent at the same time. He wants to be left alone yet he can never be left alone. He wants to live in his own world and I am the one continually trying to change that. It’s like the more he gives to me the more he has to be back in that bubble again for safety. He had had enough tonight. But I hadn’t. He was ready to be put down in that baby crib in the hospital to sleep and I was longing to hold him that little bit longer all over again.
I kissed him. I tucked him in and then I went to leave the room. Except I couldn’t.
So I broke my own rule and climbed in beside him. I expected him to scream, to push me away and wrap himself in his cover like he always does.
Instead he wrapped his chunky arms around me, snuggled in and smiled at me. He fell asleep right there in my arms, just like he did the day he was born seven years and five months previously.
I may never hear his thoughts and worries. I may never truly understand his sensory needs or fascinations. I can’t be autistic like he is.
But tonight I was right back there hearing his little heart beat and promising him the world.
Today, for brief moments in time, our worlds collided.
A moment is all it takes to connect.
It is a true honour to know a lot of families who live with autism. To mark autism awareness month this year I asked over 100 of those families to describe their children to me in one word or phrase. I collected them all together to make a video and to share with you all here.
Their answers are powerful, beautiful and inspiring.
- Always smiling
- Train lover
- Horse lover
- Great artist
- Loves outdoors
- Socially rigid
- Cat lover
- x-box addict
- Routine lovers
- Toothbrush facination
- Light of my life
- Bus obsession
- Minecraft crazy
- Dalmation collector
- Harry Potter’s greatest fan
- Cheeky chub
- Mummy’s boy
- Animal lover
- Thomas Tank engine fan
- Little monkey
- Aspiring author
- Best friends
- Horse lover
- My world
- Simply the best
- Gifted performer
- Hard working
- One-armed woodworker
- Superhero lover
- History Buff
- Dinosaur loving
- Water baby
- Minion fan
- Teddy loving
- Figure obsession
- Brilliant sense of humour
- My hero
- Loved to the stars and beyond
- Big hearted
- You tube lover
- Always on the go
- Texture seeker
- Bundle of energy
- Extreme sense of fairness
- The reason I live
- Heart of gold
- Nothing gets in his way
- Talents outshine his difficulties
- Laid back
- Full of character
- Lego lover
- Little princess
- Everything I could want and more
So many children, so many families and each one of them different and unique. There is one important thing to note though: every one of these precious children is much more than a diagnosis!
You can see them all here
Have a wonderful autism awareness day!