Tag Archives: autism strategies

Autism, Shopping, Obsessions and Chocolate Cake!

When your son shouts “Shopping!” at 6:50am, you forget about a lie in, pull on yesterday’s joggers, and get your son dressed. You react to a verbal request with no hesitation. You do it because you have spent years waiting for your son to talk. Years crouching down, holding up picture sequence cards and trying to work out what your son wants. Years praying to hear his voice, the tone, the amplification, the bit of his personality that you have waited to get to know.

As you turn into the carpark and watch his face light up at the Morrison’s sign, you feel a lump in your throat. You feel emotional, because you remember the blank stare he always had across his face, just looking at the back of the car seat in front of him. No pointing at the trees flying past, or screams in excitement at the sun as it followed our journey from the sky.

As you step out the car and take his hand, you well up when you ask him “Rhys, carry bag?” and he takes the shopping bag in his hand. Your son who could not follow any instruction. Where language was just a mash of sounds that he could not process, meaning calm words in scary situations had no effect, or words of warning were as good as not being heard. But he can now understand.

You feel like you have hit the jackpot, when you walk hand in hand into the shop, the shopping bag held in his hand. Yes, just calmly walk into a shop! A place where surfaces beam bright light, strange beeps and pings hit the ears and vibrations of trolley wheels penetrate the body with pain. An environment where you have sat on the floor so many times. Your son in an uncontrollable meltdown, kicking and screaming in an environment he cannot tolerate. But today you just walk!

“What do you want?” you ask, crouching down to your son’s level, knowing your stuff and how to talk to your son, the years of education you have taught yourself and the snipits of information you have grasped from the limited professional help you have been provided. “Chocolate cake” he says with no hesitation, but waits for your lead. An exchange of conversation you never imagined would ever happen. A moment of exchange between both of you, where you have reached a stage of understanding. The pain of constant strategy, baby steps and the goals it results in, have all been worth it.

As you walk into the bakery isle, you son points to a cake with no hesitation. With no delay of deciding what to choose. You don’t challenge it, you take the cake he has pointed to, the double tier chocolate cake for twelve, when you cleary know there are only five in your family. It is because of his action. The action you spent months and months working on by physically holding out his arm, placing his fingers in a fist and letting his index finger point at objects.

You then let him carry his cake to the self serve till and push the boundary like you have done so many times before. You pray you are not going to push your son too far, too far that things will fall apart and put you back on the floor in a meltdown situation. But without trying you will never move forward, and you know if it fails, you will learn how to adapt for next time. So you instruct your son to scan his cake. You show him the bar code, and let him wait for the beep. You then direct his finger to the touch screen and you both press “checkout” together, and wait for the last beep as you help him touch the reader with your card. Then you punch the air in triumph, because this simple goal for others, is something you dreamed would never be possible for your boy.

As you walk out the shop you loose control of your emotions when your son, holding his cake, in amplified tone, shouts “Chocolate cake” at the security guard. It is only 07:30am, and that has made that guy’s day.

So this morning we had a sugar breakfast. But today was a day where “No” was not an option!

To all those parents who are unable to take their children anywhere. To the parents who sit on the ground trying to calm down their kicking and screaming child. To those parents who feel they are clueless and lost and drowning.

You are not alone.

Keep trying.

Keep hope.

Keep your head up high.

It may not feel like it now, but you are doing an amazing job. You are helping your children find their way. You are creating a foundation you and your child can build on together.

You will look back at your past self, and never imagine reaching the place you are now.

And who knows what the future has in store!

For us, it will be a chocolate cake breakfast every Saturday! Because I want to start every day like we started off today! And I hope you can too!

Milestones Worth Celebrating!

I remember standing in a gymnastic hall. All the equipment surrounded me, the parallel bars, beam, trampolines and other strange equipment that I don’t know the name of.

Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

Kids ran around us joining in with the toddlers open floor session. Some joined in with the songs and their corresponding actions that were being enacted on the open floor. Others were energetically lunging themselves into the foam pit, or doing fancy somersaults on the trampoline.

As parents followed their children around the different pieces of apparatus, I could overhear a parent next to me. Her little girl was about two, and carefully tackling the well thought out obstacle course that had been setup by one of the instructors. Her mother held her hand as she walked over the soft mat up to the low ground-level beam. “Come on darling” she said “you can do it”.

The little girl was nervous but reluctantly put her first foot forward, the only stability she had was from her arms which she spanned out on either side of herself to distribute her weight. As she took each step, she came closer and closer to the other end of the beam. Her mother slowly walked next to her, judging if she was going to make it, ready to grab her hand if the wobble became a potential slip or fall.

The mother watched her daughter’s every step, but she only watched with one eye, because her other eye was on the rest of the room. She checked to see if anyone else was witnessing this achievement in the making. Her daughter was in her element, she was reaching a milestone worthy of an applause.

As the little girl took her last step and accomplished the great feat, her mother lifted her in the air, and slightly louder than required said “Well done, you are amazing” then swung her around and looked for the next opportunity for success.

I turned away from this celebratory event and stared down at Rhys. He sat on the floor oblivious to all the people, children and noise around him. I followed his line of slight across the wide open space and up the wall about ten meters away from him. Half way up was a white clock, the numbers one to twelve around the edge.

Out of all the activities, entertainment, and gymnastic equipment, he had chosen the item that had the least relevance to the situation, but an item that meant more to him than any of the things that surrounded him.

I had no hope of getting Rhys to walk a beam like that little girl. I had no ability to even get him to engage with the room. The clock on the wall was his only interest, not the ability to display his achievements of somersaults or dismounts off a low beam.

Since this situation about five years ago, I have overheard many milestones being celebrated by parents. They are being celebrated in parks, play centres and all across social media. A video of a child’s first words, or a little boy initiating a pee all by himself behind a tree because he knew he needed to go!

Rhys is accomplishing so many things, but often I feel that I don’t have enough words to describe the mountain we have climbed to achieve them. It is so hard to explain the feeling when Rhys runs down an unknown path for the first time, or he says “drawing”, taking a pen in his hand with no reluctance, or he understands a simple command like “pass me that book!”

… to others it just doesn’t seem to be as bigger deal to them as it is to you.

It is a feeling of wanting to shout it from the roof tops. It is not like the mother in gymnastics who secretly invites you to share in the accomplishment. In contrast, you want to fly a banner through the sky and publish it in a newspaper. But to others it just doesn’t seem to be as bigger deal to them as it is to you. Their children did all these things as part of their ongoing development. They are not milestones they recorded or celebrated. They just happened!

But that doesn’t matter because they are not their child’s achievements. They are Rhys’ achievements. They are the result of hard work, and I have realised that I don’t need the acceptance from others to confirm that they are worthy of a bottle of champagne, because I know what we have gone through to achieve them. He may have taken a bit longer or a lot longer to get there. But it is not a race, we all do it in our own time.

There is no need to look to others for acceptance that something is worthy of celebrating. We all know that feeling inside when something remarkable happens, and when I look at Rhys, I know deep down he is celebrating with me too.

🕝🕑🕧🕣🕞🕜🕟🕢🕥🕙🕦🕚🕠

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The Life of a Special Needs Parent

Special needs parents lead different lives.

We spend a life of searching. Sifting through websites, articles, picking up rogue posts off social media, or a snippet of information from a conversation. Information which will change things for our children going forward.

In the begining we quickly realised that there was no special parenting guide or resource base where everything was waiting for us. You had to find it, and they hide it so well, scattering it in a multitude of places!

We lead a life of fighting

We lead a life of fighting. Fighting the authorities for the best support and education for our children, and then fighting to keep that support. We fight for a referral, and then have to wait months, sometimes years to get the services we deserve, to only get pushed aside with a written report ready to file away with the others.

Our children are discharged from speech and language specialists when they are still unable to communicate or speak a single word, leading to new fight to keep what you were promised.

The documentation is endless. Multiple write-ups of our child’s development, always in a negative tone, visually showing in black and white, all the things our children cannot do, rather than the difficulties that have overcome or the amazing barriers they have smashed down.

We hold legal documents which define the education to be delivered to our children, and then fight the schools to deliver it. Education that is published as free for all, but really it is just for those where it is easy to cater for.

We lead lives of staring and comments. A life where we stand out because our children are louder than others, or attract attention to themselves by shuttle runs up and down supermarket isles or getting super excited at a moving piece of equipment, their hands flapping in a overload of euphoria.

We communicate differently, in ways we have had to research, try, fail and then finally succeed with. Stooping down to our child’s level and holding up pictures or round coloured traffic light cards, to help them understand what is next or about to end.

Stares come from those parents who can just shout for their kids to follow, confused at why we don’t just tell our children through voice commands about what to do. They hold their heads up high thinking they are better parents that us – but we know different, we know how far we have come.

We have to contend with angry parents whose children have been pushed, hit or kicked by our child. We try to articulate that the reason wasn’t out of violence, but rather a form of non-verbal communication, or frustration or sensory overload. We continuously voice our apologies for something out of our control. But those parents don’t listen, they just want justice for their hard, a hard that is so much different to ours. So we start to avoid those places, we steer clear of those people.

We know all about sensory overload, an area which meant nothing to us before. We learn how to help our children manage it, how to notice the signs and places to avoid. It becomes a central reason for the way our children act and how we coordinate everything we do.

Our children can’t go to all the places.

Because our children can’t go to all the places. Some places are too over-whelming. It could be a birthday party, or a catch-up at a play centre, or an unknown location you don’t have a picture for. We decline these places because we know the potential outcome. We know it may not be pretty.

We are however parents who make our own rulebooks. We create new goals for our children, milestones you will never find in professional checklists or folders. We punch the air in jubilation when our children manage to zip up their coats after years of hard work, through the use of strategies and techniques we have mastered along the way.

We high five our partners, keeping our celebrations within our tribe.

We high five our partners when we watch as our child follows a verbal instruction, because we have had years of them not understanding, just sitting blank faced at our request.

We keep our celebrations with our tribe, the parents who know the same struggles. Because there are no words to explain the feeling when your child finally says their first word, years after the rule book said they should. Other parents are past that stage, that phase was years ago, when their children were also celebrating their first step or ball throw. They have moved onto newer and bigger things.

We feel the loneliness, the separation from other families. We talk about our hard to those who understand, because only by living through it, do you know how hard it actually is.

But our children are still here. They may not be meeting the expectations of society, but they are exceeding all of ours!

Special needs parents are taking each day at a time. They are fighting for their kids. They are advocating for their children’s conditions and pushing for inclusion in a world which cuts them off.

And while we do that our children will continue to grow and develop in their own way…

Because..

…the world doesn’t define what our children are to become, our children define the world they want it to be.

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7 Tips for a Perfect World Book Day

📚 World book Day 📚
A day to celebrate the joy of reading and to encourage our younger generation to explore hidden magical lands, discovering tales of adventure and courage.

Thursday will see some amazing costumes, from the extraordinary ten pound ready-made costume from Amazon, to the parent who has delicately crafted a costume from scratch (hats off to those folk).

Any dress up occasion for Rhys is a challenge. The fussy material, the added weight and inconvenient additions to his clothing. He won’t have it. He is uncomfortable in any abstrusity or difference to his normal comfort, and that’s when I actually manage to get him into something for a few seconds.

These small events, like costumes for World Book Day, are the memories that us parents of children with special needs miss out on. I just want to be like everyone else for once. I don’t want people thinking, “Oh that poor child, their mummy forgot about today” not realising the fuller picture and challenges we face.

But I have found ways to make Rhys part of the day and hope that these tips can mean your children can too.

  1. Accessorise
    Choose a book/character that is just an everyday boy/girl. Then add the accessory.
    Charlie Bucket: Normal clothes with bar of chocolate.
    Dennis the Menace: Jeans with a red and black stripy t-shirt and added slingshot
    Harry and his Bucket full of Dinosaurs: Normal clothes with a bucket packed with all the dinosaurs you can find.
  2. Top it Up
    Find a T-shirt with the book character. Amazon is great for this or some supermarkets have the rights to specific books/characters.
    Last year Rhys was perfectly happy to go in his Gruffalo t-shirt, purchased from Sainsburys.
    Search Amazon for “T-shirt World Book Day” there are amazing t-shirts for Marvel Characters and many other books, including Diary of a Wimpy Kid.
  3. Customise
    Rhys will happily wear some items but the fussiness of others are a bit too much. If you have a costume you think will work but the hood gets in the way, or a piece of material is a bit scratchy, carefully cut it off. Use the costume as a starter for 10 and make it your own.
  4. Create Your Own
    If you are feeling creative and have the time there are so many options with this one. A plain tshirt can be the foundation of many costumes.
    101 Dalmatians: white t-shirt painted with black spots.
    Stickman: brown t-shirt with black lines in the shape of tree indentations.
    Funny Bones: black top and bottoms with a skeleton painted in white.
  5. Keep Your Hat On
    Rhys has a love/hate relationship with hats, but it is a great option for a costume.
    Wearing some plain clothes, add a hat with the book character.
    The Velveteen Rabbit: buy a brown, bunny hat, and dress in plain brown clothing.
    Room on a Broom: Witches hat and dress plainly in black and purple.
    Where’s Wally: white hat with red bobble coupled with red-white t-shirt and jeans.
  6. Onesies are for all Occasions
    Rhys loves to feel snug and comfortable. Onesies are amazing items of clothing, and with the variety on offer, there are loads of ideas for World Book Day. From animals to famous book characters, or just simple printed onesies with no fuss, only comfort.
  7. It is not just Fiction!
    Last year my eldest went dressed as a dinosaur with his 101 facts about the Triassic period under his arm. Books are not just the fairy stories we love, they are also the reference books and encyclopaedias we dip into from time to time.
    If your child already has a favourite outfit or t-shirt/jumper, use that as your reference, then find a book to associate with it.
    The Wonder of the Solar System (Brian Cox): wear their favourite space t-shirt
    Seven Worlds One Planet (David Attenborough): Enjoy while wearing their favourite monkey onesie
    Counting to 10: Wear t-shirt with a number on the back.

Always remember the book and either get them to carry it (good luck with that) or more realistically hold it yourself and wave it around your child in the school playground to demonstrate your efforts. If you don’t have the book, take a visit to the library or do a shout out to friends to ensure you have the ultimate World Book Day item.

The last tip for this day …

The change in dress code plays havoc for us in regards to differences in structure and confusion of whether it is a school day or weekend day 🤔

As Rhys gets ready in his World Book Day costume on Thursday, the last item he will put on is his school t-shirt. It will go over his costume defining the day as a school day. In the past his older brother has been amazing and worn his t-shirt on top of his costume in pride, helping Rhys know what day it is. The visual representation of a school day is on display leaving the normal routine of a school morning to progress.
At the last minute, when putting on our coats, we will pull off the school t-shirts, and be ready to go. We will be just like everyone else, because there are times during our challenging lives where we just want to have a moment to fit in and be part of the crowd.

What will you be doing for World Book Day?

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Worry vs Wonder

The tears ran down my face. They came from a place of hurt and stress and uncertainty. The result of the feeling of nothingness. A sense of loss. The loss of the life I thought I was going to have. A vision where me, my husband and three kids, would go on crazy day trips together, create memories and do the things that every other family did.

My life expectations had been pull out from beneath me. They had been wiped out of my life plan, my vision for the future. My son had received his diagnosis. A diagnosis, that although would never change who he was, it would change the way I thought our life would be.

I started to ask myself questions.

I started to worry.

The worry was for every day things. The stuff other families just did without thought, but for us would take the planning of a board of directors.

The worry about his education, how he would learn to write, to read and to add up numbers. I worried about his future and whether he would get through high school, and then what? What would he be capable after that? Would we choose mainstream or a special unit? I worried what that all meant!

I worried about small things that were actually such big things.

I worried about small things that were actually such big things. Like whether he would ever form friendships or have a friend. What about the traditional marriage and two point four children? He currently wasn’t socialising, or able to talk or integrate or follow instructions. How would he ever have a friend? Would he be alone and not feel that bond with someone? Would he ever experience the fun, naughty and exciting things that friendships guarentee?

I wanted him to come home and tell me about his day, about what he had done, and where he had gone. But he couldn’t. He was pre-verbal, not a sound to convey or even the ability to converse in any other way to tell me about his daily adventures. I worried that he had been sad, or bullied, or alone, or even had an amazing day. I never knew. My son just stood with a blank stare, and not a word muttered, not a sound exchanged.

I worried about where we could go or how a situation would play out. Often outings were filled with stress, with meltdowns, with stares from strangers who tutted and wrote it off as bad parenting. I lost my excitement due to the worry that things would just crash and fall apart. What reason was there to get excited in what was doomed to fail?

I worried for my other children who had to take this challenge on their own shoulders. Who had to be on the sidelines missing out on things which should be guarenteed as part of their childhood. I worried about how they felt when their brother was in a state of inconsolable distress, and their feelings ignored while my focus was fundamentally on controlling the more intense, urgent situation on the floor in front of me.

I knew we needed to change. I couldnt continue with the worry, the uncertainty of my son’s future.

So we changed.

We shifted our mindset, realising that the future could only be influenced by what we could influence today.

We started to disect every situation, and analyse every step. Me and my family worked together. We striped out the worry through factual analysis and plan execution.

And with that change we started to move forward.

I realised that the only way I could change the future was by shifting my perspective. As I looked down at my big blue eyed boy, with his long blonde surfer locks, I saw a child with purpose. A child who was happy and content and determined to do what he was interested in.

He didn’t care about the stares or the fact he only ate pizza every single night for dinner. He did however care for me. His cuddles and snuggles into me when he was scared, his laughter when I tickled his belly, and his smile when I threw him in the air. He wasn’t worried for the future, he was happy in the present.

I had to change myself, and not keep looking for ways to change my son.

I had to change myself, and not keep looking for ways to change my son.

I started to focus on what he wanted, what that day held, and how we could overcome the challenges which were present in the present.

As soon as I changed my perspective, and as soon as I stopped and watched my little boy, I saw his quirks, his strengths, his warmth and personality. We worked on strategies, which improved his engagement, and over time finally lead to speach. We changed his school to one that met his needs, something I worried about constantly before, where I had worried about what others would think, what others would say.

I turned away from the stares, the comments, the harshness, and looked through the eyes of my child.

I stopped worrying.

I started to wonder.

Through all the changes and development, my boy started to smash down the barriers. He started to meet milestones. Not the milestones in the published parenting books, but the milestones we had set for ourselves as a family. The ability to leave the house, the understanding of where we were going, the engagement between ourselves and our children. My son started to prove the world wrong.

I stopped, and I wondered.

I wondered what the future now held for my son. It was not a worry, it was a wonder of what other successes were on the horizon. What new experiences we would create and enjoy.

It was not a worry, it was a wonder.

Our lives were different now. But that didn’t mean they were worse. Just different.

The tears fall less frequently now, there are more smiles and moments of laughter, as I wonder what tomorrow has in store.

Change your perspective. Don’t worry about a future you know nothing about. Focus on the present and instead of worrying you can start to wonder.

#worryvswonder #fcvblogsquad

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