Category Archives: Autism Life

A Cage Fighter or Just a Little Boy?

We are at that stage in my son’s life. That phase where he looks more like a cage fighter than my little blonde haired cutie.

He parts his lips to smile at me, but I am met with a gappy mouth. The loss of his top and bottom two teeth in the space of two weeks, has left him looking like (well if he was ten years older) someone you would not want to meet in a dark alley!

The first tooth loss came and went, with no fuss and was a pretty much a non-event. But things have changed.

Rhys stood this evening and watched his reflection in the window. The massive gap in his teeth reflecting back at him. He continued to babble, phrases from Hey Duggee and Peppa Pig flowing from his mouth in his own little muddled up conversation. He watched his mouth move and the gap flashing back at him from the temporary mirror. As he spoke, the words were interrupted with sobs and gasps for air. Tears flowed down his cheeks, and turning his face to me he whimpered “I’m sad”.

“Why you sad, Rhys?” I asked, trying to take him in my arms, but the comfort wasn’t accepted, and he pulled away, turning to communicate his pain to me with his hands, the words unable to roll off his tongue.

Then placing his fingers to my mouth, he tried to pull at my teeth. His tears rolling further down his face.

“Rhys, teeth will come back” I said, realising his confusion at the change that had happened so quickly. I looked to the table and saw his uneaten dinner. The feeling of biting into his crackers had put him off his food. Lunch lay untouched in the kitchen from earlier, a little boy who couldn’t face the strange sense in his mouth continued looking at me with confusion.

Once Rhys had realised that I understood why he was sad, he let me take him in my arms. He let me cuddle him, while his tears continued to fall.

To my other children the joy of a little fairy bringing a gold coin, in exchange for their teeth, is an event that they will wiggle every second of the day to bring closer. For Rhys, the exchange of money for his pearly whites, is a bizarre concept he is unable to comprehend. To Rhys he has no teeth where there used to be, and that is upsetting.

Rhys’ bottom teeth are coming through, his top gap is just gums. It is a change to the norm, and it will take some time to adapt to.

For now, cuddles are unlimited, while we step through another change in this scary thing called life!

I now just need to go and pull on my fairy wings and grab a bag of chocolate coins. Because chocolate makes everyone a little bit brighter.

🦷🦷🦷🦷🦷🦷🦷🦷🦷

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TOTS100 - UK Parent Blogs
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Move Over Mr Blumenthal!

The chore that every parent undertakes daily – the timely execution of the evening meal. Bring it on!

It always starts with excitement and the feeling of pride. The dream of it only taking fifteen minutes, in line with Jamie’s expectations, but really ending up with a few f’ing hells and fist throwing, in line with Gordon.

Either way, all the legitimate research has clearly demonstrated that the amount of effort and time you contribute to a child’s dinner, is equally proportionate to the speed and accuracy of aim when it is chucked directly back at you!

I failed to read the research!

I decided to coordinate a meal of bangers and mash. It wasn’t fancy, even the sausages were just standard pork, and the peas were good old Lidl’s own – frozen not fresh! I was however proud. Proud that I was making an effort in creating something as a result of my own labour, with more effort than just plying open a cardboard box of beige – which had been extremely successful last night. In hindsight it makes me wonder why I have deviated from the norm!

The smell of sausages emanate from the oven, as I whip up the potatoes with butter into a frothy consistency. Check me out Nigella!

I dish up one plate in the standard arrangement of mash, with sausages on top, peas on the side and all drizzled with gravy. I even make one of the sausages stand slightly erect – purely for my own giggle factor!

It looks amazing, a perfect home cooked meal. My ego is boosted more when my eldest happily accepts it, picking off the from the plate while in his travels back to the daily dose of YouTube. But then I look at the second empty plate and think for a few seconds. My younger son, Rhys, is autistic, and although sausages are a winner – potatoes, peas and gravy are not part of his dietary portfolio.

But there is one thing he does love – cake!

Going the extra mile, I get creative. With all the Heston imagination I can muster, I grab a cupcake case and start to spoon some mash into the green cup. Taking one pea at a time, I add them like sprinkles and finish with a little icing gravy.

I stand back and nod in amazement at my work.

Placing the mash ‘cake’ next to the ‘guaranteed to be consumed’ sausages, I take a deep breath of confidence and proceed to the front room, depositing the meal with pride in front of my son.

“Rhys, dinner” I say, and then pointing to the cake, I add “look cake”

Standing back I watch my son pick up the cupcake in his hands. It’s a bit squishy in texture, but he picks off one of the green sprinkles and places it in his mouth.

I mentally jump for joy as I watch my son, who only consumes a handful of items, eat something new. I have done it, I have found the secret method of new food introduction.

I might write a recipe book detailing different ways to present food. I will call it ‘The Food Disguise”!

But I am pulled from my aspirational dreams with the feeling of mush being forced into my hand. The handful of green is then increased as Rhys proceeds to take each one of the other green sprinkles from the cake and place them in the palm of my hand.

While I stand with a handful of peas, I grasp every ounce of hope that the potato will find its way into the taste test. My eyes wide with the urge to not miss the moment, I see Rhys lift the cake to his mouth and lick the soft fluffy contents.

I hold my breath and then exhale every piece of hope I had. My future recipe book lying crumpled in a virtual heap, a review on the back reading “With every pea comes a handful of mash!’

Rhys holds out his tongue as if it has been coated with poison. Taking the palm of his hand he wipes the potato from his tongue and then immediately discards it on his t-shirt. The cupcake case is tossed to the floor, landing in the scientifically correct way of potato side down!

Going back to the kitchen, I tear open a box of pizza. The round beige meal deposited onto the middle tray of the oven and the knob ramped up to 200°c.

“Ok Google, ten minute timer” I say, and ditching my chefs hat, realising that I have been defeated. There is only one option. To leave the virtual assistant to take the reins.

TOTS100 - UK Parent Blogs
TOTS100

The Club of 3am!

Being an official member of the 3am club, I want to introduce you to the top 20 realisations of getting up before the sun.

  1. You begin to ponder whether 3am is actually the middle of the night or just very early morning!
  2. Telling your son it is still “bedtime” is just a waste of energy, you are experienced enough now to know it is a waste of time. They are awake and to them the day has begun!
  3. Cbeebies only starts at 6am and although you have Amazon Prime and Netflix, replaying the same episode over and over again takes effort and engagement with your child. Engagement isn’t law till after 7am!
  4. It is difficult to distinguish between whether you are just really tired or actually ill. Both feelings blur into each other and your brain lacks the capability to segregate them!
  5. It does not give you more time to do things! Efficiency and tiredness are not multiply exclusive.
  6. Five coffees before 7am has no impact in preparing you for the day, just makes you pee ten times more before breakfast.
  7. You eat breakfast at 5am which means lunch is moved forward to 10am.
  8. You eat more due to running out of mealtimes with dinner shifted to the earlier slot of 2pm!
  9. You realise that a walk (to try and get some air) only leaves you panting like a eight-five year old on her weekly trip to the Post Office!
  10. In an attempt to push forward with the day, the eighty-five year old over takes you on her errands, so you give up and rest on a park bench. Sometimes you add a nap!
  11. Everywhere looks suitable for a nap!
  12. While you have a wee, you place your head on your lap and feel a sence of calm pass over you. Sleep feels good, you could sit there forever!
  13. You umm and aah more than normal on a work conference call, attempting to perceive yourself as virtually conscious and “in the room” while actually sitting in yesterday’s pants and lying curled up on the couch motionless! Loose woman is on in the background on mute with illegible subtitles blurring across the screen.
  14. You lack the ability to talk and find yourself making up new words, like ‘decisioning’, and believing they exist.
  15. You feel no guilt in thoughts of punching Karen in the face when she says, “I don’t know how you do it, you’re amazing”. The fact is we may look like we are, but realistically we would be more sober after knocking back ten gin and tonics!
  16. The culprit of the 3am wake up does not get affected by the lack of sleep, with energy levels continuing to increase exponentially throughout the day. This really starts to tick you right off!
  17. You have no energy to keep the 3am child up, as the evening draws nearer, the child passes out early starting a vicious chain of events whereby they wake up early again and turn 3am into the new norm!
  18. Takeaway for dinner on a 3am day is unquestioned.
  19. You only manage half the takeaway because eating takes effort you just don’t have.
  20. The children’s dinner takes all your effort to just throw a hot cross bun, pate crackers and a yoghurt on a plate, but your eldest son still looks up at you, gives you a cuddle and says, “It’s ok, you are still a good Mummy and I love you”. Nothing will beat that!

Rhys may have given me exclusive access to the 3am club, but I know I am not the only parent out there with those rights. 3am is just a time, and tonight I will be in bed by 8pm catching up on shut-eye ready to take on another day tomorrow.


Night-night.

TOTS100 - UK Parent Blogs
TOTS100

The Silent Mattress

Umizumi is playing on the telly, with Bot displaying the task on his belly while Geo and Milli threw around some shapes and patterns to solve the problem at hand. I leave Rhys and his sister to the entertainment, their big eyes pulling in the light from the digital display.

As I get on with my house chores, I pause and listen. That tranquil sound we hardly ever hear, but is the top of the Christmas list, emanates through the house – the sound of silence! I continue to tidy the kitchen, but that feeling of concern, over too much silence, suddenly engulfs me. I put down the dishcloth and go back into the lounge to check on the situation.

As I walk into the room, Rhys is not in my line of sight, but turning around towards my daughter, I see her sitting still on the couch. She looks up to me “I’m stuck Mummy” she says, and I smile at the scene in front of me.

Rhys, too exhausted to continue, has passed out, across his sister’s lap. A comfortable spot in his opinion, but a slight bit of inconvenience for his newly found mattress!
“Dont worry Jessie” I say, and lift Rhys from her lap.
“I was looking after him” she says, her big brown eyes looking up at her brother now passed out over my shoulder. “He wanted to sleep on me”

With her pure little heart watching out for her brother, she curls her legs back up under her body and turns back to her tv show, content that her duty is done.

We have to all look out for each other even if it is just giving your lap up for a sleepy head! Engagement and bonding comes in many different ways and sizes.

TOTS100 - UK Parent Blogs
TOTS100

Our Boy – Rhys!

He came into our lives with jet black hair receiving the name of Jacob Miles … but that only lasted for about five minutes because the second I looked from Rhys to my husband, without a word we knew that was not who he was.

The name however did not go to waste, as we christened a second arrival to our home with that name a month later, and he is quite happy about it. Well at least I think so, he continues to show his gratitude by leaving presents on our front door mat – they are normally decapitated! 🐾

Rhys was a chilled baby. He would sleep soundly and when hungry would feed within five minutes, giving a good four hours to myself before the cycle started again.

He took his time to walk, and it was only at nineteen months that his wobbly legs allowed him the freedom to run around the playground. He never engaged with any other children but would spin continuously while others his age fought over toys or coloured and painted. I put his differences down to a delay in his developmental milestones. The fact that he was not speaking, was pushed to the side, because I saw his strengths in physical development and assured myself that he would catch up.

Rhys

But at twenty months, I started to question his engagement and lack of talking. I started to notice things, like how he wouldn’t answer to his name or respond to any request or call to action. While other children were engaging with their parents for requests for food, drink and the latest toy, Rhys sat looking at the little illuminated numbers on an alarm system or digital clock, everything else around him was non existent.

I would look in the rear view mirror as I drove him home from nursery. He would face directly forward looking at the seat in front of him in a haze. The amazing trees and cars that fascinated other two year olds would flash past with no acknowledgment from the passenger.

I put it down to glue ear and we went through ENT specialists, with hearing tests and wax extraction. But there was no progress. I wanted a solution, a quick fix, but none of the professionals had the answer. It was only after multiple assessments and paediatrician appointments we received a diagnosis of autism. Rhys was three and a half.

That diagnosis broke me. It cemented the fact that life was going to be different. It confirmed that there were challenges, and this was not a developmental delay where he was going to catch-up.

I went through a stage of denial. “Once he starts talking, it will all be fine” I would say to myself. I continued to “treat” him like my eldest son, expecting him to follow instructions and do activities expected of a child his age. However my actions were met with meltdowns, tantrums, confusion and frustration.

I became a prisoner my own home. I didn’t know how to communicate with my own son. Leaving the house meant confusion and sensory overload and Rhys could not cope with the anxiety, uncertainty, strange smells and sounds. His body and mind would shutdown, the only solution it had to coping with a world so scary and strange.

It broke me. It tore me up inside to a point where I wanted to punch a wall with my fist just to feel something, because inside I was empty, drained and without an ounce of energy to continue. It was the lowest point I have ever been in my life. It was not a situation where I just needed to go for a walk to clear my head, it was a time where I couldn’t cope. After hiding behind a fake smile and put-together persona, I did the hardest thing I have ever done. I asked for help. With help I became a different person. A person who learnt to adapt and help my son through his challenges and this scary world he lives in.

I accepted Rhys’ autism and together me and my husband worked with professionals to learn strategies, techniques and what autism meant for Rhys and our family.

Rhys said his first word at four. The word was “Apple” his favourite food. Shortly afterwards he said ten other words. They were “one, two, three, four, five, six, seven, eight, nine, ten”. Numbers are Rhys’ world, and we used this to engage and develop him. Everything we saw and pointed to got linked to a number and counting. “Look Rhys. Three ducks. One duck, two ducks ,three ducks”.

That was only a few years ago!

Rhys can now talk and follow basic instruction. He can request different foods, a tv programme or toy with his learnt phases of “I want please Mummy”. He says “Thank you” when I fulfil his request and he takes himself to the toilet when he needs to go. Rhys is not able to hold a conversation with me about his day or ask me about mine. Everything is functional and is there to meet his daily needs. But Rhys is only seven, we have a lifetime ahead of us. Knowing where we have all come from, the places we can go are now limitless.