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The Club of 3am!

November 20, 2020 AMe 1 Comment

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

You begin to ponder whether 3am is actually the middle of the night or just very early morning!
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!
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!
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!
It does not give you more time to do things! Efficiency and tiredness are not multiply exclusive.
Five coffees before 7am has no impact in preparing you for the day, just makes you pee ten times more before breakfast.
You eat breakfast at 5am which means lunch is moved forward to 10am.
You eat more due to running out of mealtimes with dinner shifted to the earlier slot of 2pm!
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!
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!
Everywhere looks suitable for a nap!
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!
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.
You lack the ability to talk and find yourself making up new words, like ‘decisioning’, and believing they exist.
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!
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!
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!
Takeaway for dinner on a 3am day is unquestioned.
You only manage half the takeaway because eating takes effort you just don’t have.
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.

Autism Life

The Silent Mattress

November 19, 2020 AMe

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.

Day Out

The Big Eat Out!

November 16, 2020 AMe

“Shall we get some food?” asked my husband as we walked out of a successful bowling family outing. We were all on a bit of a high from a family activity that had gone to plan. I looked up to see what he was referring to and saw a burger restaurant was in front of us, it was a takeaway, sit-down-if-you-want type of establishment. I assumed we would grab some food to eat on the go, as we have not sat down as a family in a restaurant for many years, longer than I can remember.

Rhys doesn’t do sitting down, waiting for food and social norms like eating out, are not part of his agenda. He will shuttle run up and down between the tables, and if the opportunity presents itself, he will run out an open door. There was once a situation where he didn’t want to sit at the table with us and decided to sit down at a table with an old couple who were on a quiet meal out. They didn’t seem to mind, but probably wondered what was wrong with us!

We find eating out stressful, and have therefore discounted it from family activities, resorting to a quick take away, picnic or lunch at home.

Until now. We decided to give it another try!

We took a chance, and as the food got ordered, I ushered our family into a booth. We all sat across the table from each other, Rhys included, and I thought to a picture I had seen earlier on my Facebook feed. I thought of families who regularly go out for food together, they snap a shot of them all around the table, conversing and enjoying a meal.

Here we were sitting, just like that family in the photo I had seen earlier.

We were however naturally contingency planning, knowing that our food could just be packed up and taken with us if something went wrong.

As we dished out the food, Rhys wouldn’t touch his hotdog, and pushed away the chips, but he sat there with us. He was happy to sit calmly and watch us eat, and look around at the sights of the restaurant. We all took our time eating our burgers and shared a strawberry milkshake, passing it around letting the paper straw get soggier with every sip (not the best decision!).

The environment was calm and stress free. A feeling of achievement washed over us. Our whole family out having a meal together, without one of us jumping up every two seconds to retrieve Rhys or calm him down.

As we sat, we took a photo. A photo that means more to our family than any other family’s weekly breakfast meal out. The first photo of us having a meal out together. The first photo ever.

We sat as a family eating a meal. The first meal together in a restaurant in forever.

There are no more words to describe the feeling of achievement and success. We are all moving forward in this scary world, and goals are limitless. Who knows what we will achieve next!

What are your experiences of eating out? Head to Facebook and let me know your story.

Day Out

A Bowling Strategy!

November 15, 2020 AMe

“Rhys, what colour?” I ask.

“Red” he replies, and I help him hand-over-hand to lift the red bowling ball from the rack. We lift it together onto the guide, and after a joint chant of “Ready, steady, go” Rhys pushes the ball forward. It makes a perfect direct line forward to the central pin securing a strike.

Rhys’ calves demonstrate their power as he springs up and down in excitement. The movement of the ball as it speeds down the lane provides the best entertainment for a little boy. Rhys takes his second go, which is just as exciting as the first, leaving a few pins standing this time around.

“Rhys, its Jessie’s turn” I state and hold his hand we stand on the side as he watches his sister choose her coloured sphere. I look around at the lights that overpower the room, alongside the noise as the balls hit the lane and pins. It is a nightmare experience for a boy who struggles with sensory processing, but that is where this parenting game is complex.

The momentum of balls and thrill of the smash, trump any of the loud noise and bright lights. Rhys is in his element, this activity is everything he has dreamed of. We continue to take our turns, Rhys choosing different colours, vocalising the one he wants as he eagerly lifts it into his grasp. After his two throws, he waits at the side watching his siblings take their turns.

We took a chance a few months ago, and tried bowling. On the surface we took a risk on something that made no sense on paper. The noise, the lights, the multi-sensory input. But Rhys loved it, and it has turned into a family adventure that has guaranteed success. The thing is that we would never have known if we had not given it a go. The opportunities it has presented for development are amazing – from colour association, to turn taking, mathematics and sensory processing.

Always try what you believe to be the impossible. Try it with the expectation that you may not even get through the main doors, and you may be surprised. Our kids amaze us, and throw us curve balls all the time. The rules are constantly being rewritten and we will only work it all out by pushing the boundaries.

Rhys’ hell turned out to be his ecstasy. A place we can go as a family and have fun, just like everyone else.

Head to my Facebook page to tell me what activities you do as a family. What works for you? Is it something you would never have tried naturally?

Uncategorized

Planning with Blue!

November 14, 2020 AMe

I sit down with my phone and Google the forest area we plan to visit. There are some lovely photos of the area, but I am looking for a specific one. It doesn’t need to be pretty or taken in the perfect light for submission for an annual photo award, but it does need to show the venue and its distinct characteristics.

I find the perfect picture of the entrance, the lettering depicting the venue very clearly. The path proceeds ahead with trees on each side inviting the walker to go ahead. I save the image and then continue to search for a few more images. There are some wooden sculptures along the walk that the children can search for and sit on if desired. Saving the images to my phone, I feel planned and ready for our forest adventure.

“Rhys, shoes then car, forest and sculptures” I say, pointing to each picture in turn on my phone as I state its relevance. I use minimal words avoiding complex sentences with unnecessary descriptive language.
Rhys looks at each of the images. He is comfortable with the shoes and car, he has seen those on many occasions, but the forest is new. He looks at the picture, its archway entrance surrounded by nature. I put his shoes on and then run through the pictures with him once again. We tick shoes off the sequence, as I say, “Shoes finished, next car”

Grabbing the backpack containing some snacks and spare clothes, I hold Rhys’ hand as my husband takes charge of the other two. “What sculptures are there? Will there be a fox?” shouts my eldest in excitement. “I want to see the fox too. I want to see it too!” shouts the little one as her father tries to close the door behind him.

“Come on then, let’s go see them”

I buckle Rhys into his seat as his siblings join him, pulling out my phone once again, I show him the picture of the destination, ensuring he is clear about what order of activities are going to happen.
As we pull off and drive away from our house, I turn to my husband, “I forgot to grab that bottle of water!”
“We will be ok.” he responds, because turning back to the house is not what we have communicated. It will confuse Rhys, because in his head we have car then forest – home does not feature in the sequence. So we drive forward, agreeing to steal some of the kids squash if we become too parched.

It is not far to drive, a key consideration for our trip out. As we cruise down the country lanes, there is not a car in sight, until we round a corner and realise our timing is flawed. Cars are parked on the verges of the small country road, everyone having the same idea as ourselves.

“The carpark must be full” I comment, as my husband drives passed all the parked cars and pulls into the forest venue. Families with small children and their family dog are running up the lane excited for their day out. The parents walk casually chatting, having decided on a quick impromptu day in the dry weather, happy to have found a place for their car only a hundred meters away.

We drive up the little road to the carpark and let out a sigh of relief. A disabled spot sits vacant directly opposite the archway entrance of the picture I had placed in the sequence. Every other parking space is taken, with cars being creative by parking in extra spaces.

We pull into the disabled spot, and I climb out. Opening the back door, I once again show Rhys my phone. “Car finished, now forest” I say. The picture of the archway on my phone corresponding with the real life archway in front of me. “Forest” says Rhys acknowledging the day out.

Rhys climbs out the car, jumping in excitement. Our other two children join in excited to see the sculptures. I feel a knot deep in my stomach, the feeling I always get from the hope that a plan will execute successfully. Today it looks like it has.

As I stand holding Rhys’ hand, the archway entrance in front of me, my husband fiddles in the car. He places the blue disabled badge on the windscreen, dipicting our time of arrival, alongside a photo of our son.

I look at the families walking up the path from their cars which have been parked all the way down the lane. They look at me, with my physically able son and family. The normal springs of excitement and smiles on their faces. A lady tuts loud enough for me to hear, followed by a man behind her saying (in an audible tone), “Where’s their disability?”

The disability is invisible. We look like we don’t need to park in the disabled zone. Everything has gone perfectly, Rhys is totally able of walking, we have over an hours walk ahead of us which he will manage with no issue!

So why do we take up a disabled spot?

The sequence of pictures I showed Rhys and communicated multiple times was key to our success. If we had parked a few hundred metres down the road, like other families, the visual representation of the forest entrance would not have been there. The pictures would not have corresponded to the reality presented. The day would have ended either in Rhys refusing to get out the car (we weren’t there in his opinion) or a meltdown due to the confusion.

I could have carried him to the entrance (kicking and screaming in meltdown) but even if I could show him a delayed visual of the entrance, the meltdown would be in full swing with nothing but the option of time to let it pass (it could be hours). He would then have been physically unable to walk, his brain shutting down mentally with his body dropping to the floor.

I have experienced this. I have lived through the importance of planning and sequence. I have seen the look on my other children’s faces, when their brother has been unable to cope, and I have had to watch their excitement fade as we get back in the car and go home. Leaving a good day out for a meltdown wait out.

So when you see a family, who looks just like yours pull into a disabled spot, don’t tut or comment or gossip about it. Look for the blue badge. If it is there, that family has been through assessment and awarded it for a reason. Think of how lucky you are to be able to just jump in your car and go on a day out. Think of how you can surprise your children with an unknown venue or just freely take life as it comes.

Hidden disabilities are disabilities too!

We can’t. But that is ok, because with the right systems and support in place we can be just like every other family. We just have a different way of doing it!

Head to my Facebook page to let me know your thoughts. What is your view on hidden disabilities and the use of disabled spots. How can we help share its importance?

A&Me