It is tough having your own development and progress analysed and dissected.
It is a hell of a lot harder when it is about your child.
I have been to many annual development reviews for my son. Some I walked into happy and confident, but left in tears, with a sick feeling in my gut and emotions that took months to heal from.
However, the last few years I have left feeling empowered and motivated to strive forwards to new targets and goals.
Annual reviews, for special needs children, vary extremely and unfortunately it is down to the people who support your child, their ability to communicate, support and collaborate together towards a common goal.
For Rhys we are always honest. We sit down as parents before every review and we discuss the truth – nothing sugar coated or missed, everything factual. We discuss what we want Rhys to work on, where we are not seeing progress and where we need help as parents.
Then we send the black and white text to the school, our submission for review.
Reviews are tough, they highlight the struggles, they are the formal way of showing how far your child is behind their peers. But they also shine a light on the achievements and goals they have met over the year, and whatever we need to do to get more of those moments, is what we strive for.
Every review we focus on Rhys and what he needs, or how we can work with the school to smash new targets.
We are lucky.
We have a great school setting and support for him, where school and home can blend into one. Where his teachers know all about his family and out of school activities, and we can work with the school to jointly focus on the same elements.
But it has not always been that way. I have left previous reviews and meetings feeling the need to throw up in the playschool gutter like a cheap drunk who can’t handle their emotional booze!
It took time and setbacks to find the right setting for Rhys. The support we get now was not handed to us on plate, it was fought for and as a result of set backs and tough emotions, we found our way.
The annual review is there for parents, teachers and professionals to ensure the best for their child and their needs. If your child is not central to those discussions or you as the parent are not getting what you feel is in the best interests of your child, you are part of that review and have a equal say in changing that.
Make sure you fight for your child. Prepare yourself for the review. Focus on your child’s needs and how you can all work together to achieve it.
The children stood in pairs and took their judo holds, ready for the signal to move. Rhys was in position, standing opposite a boy, who was about the same height, with brown hair, cut short and a reflective t-shirt under his jacket.
But my son wasn’t in a pair. A black belt stood behind him, whose arms came around Rhys, hand over hand as he held the judo hold that had been instructed.
As the signal came, they moved. The physical support for my son guided him in the motion, helping him fight his opponent, until a leg spotted a weakness and the fall rendered defeat.
Not one word was spoken.
The teaching was adaptive, and non-verbal.
But the skill being taught was the same. The throws and the methods were the same. The desire to learn was the same.
I have been turned from away from so many other activities and groups, with comments like: “This is not the right setting for your son” “Maybe wait a few years for when he can follow instruction” or “We don’t have the funding to support him!”
I see these examples of ableism everyday.
I hear it in conversations. At venues where my son is not welcome. In processes which restrict my son’s ability to participate.
Verbally telling Rhys to do a task, or to sit in line or catch a partner, is not an instruction he is able to easily understand or formulate in his mind.
But why restrict the learning of a skill to one way of teaching? A method where only those able to learn that way can learn?
Restriction is discrimination!
It’s ableism!
Restricting to one way of teaching has meant my son has not been welcome.
Not welcome in many, many situations.
And it means he has been excluded!
Rhys’ judo club is not a special needs club, or a club that has funded one-to-one support. It is just a club which turns no one away. It is a club that wants to develop the skill of judo, no matter what method of teaching is needed to achieve that.
It only takes the commitment to adapt to allow all to thrive. And by thriving we can all look to develop further into a community of strength and inclusion.
A dog was always on the cards for us. It was just a matter of the right time and the right moment. I had read a lot of positive outcomes of a dog joining the family home, and followed a number of accounts that spoke about the amazing bond a dog and a child could develop.
According to a report from research conducted by Dogs For Good along with the National Autistic Society and the University of Lincoln, it was found that in a family with an autistic child, the introduction of a dog resulted in meltdowns being reduced along with the reduction in separation anxiety. The feedback found that 85% of children were happier in the presence of a family dog and 69% of parents found they had reduced stress levels within 10 weeks of having a dog.
So we thought the cards were in line. Dogs brought positivity to a household, especially the advantages it would provide to my autistic son, Rhys.
But things did not go as smoothly as we imagined.
I started to research further and only found two outcomes from families who had introduced a dog hoping to get benefits for their autistic child. You had the stories of amazing instant bonding, an inseparable experience, and then you had the horror stories. You had families who lived segregated lives, where the dog remained in one end of the house while the child felt safe in the other.
I felt we were going down the latter route, where we had brought home a puppy that Rhys was terrified of and would never be able to live alongside, let alone create a bond! But we were not ready to give up, we started to develop a strategy to make it work. We created a system, a phased approach to integrating the new puppy into our home, where the benefits could be found.
1. Do Your Research
You should never enter into the decision of getting a dog without the thought of how they will integrate into your home. Depending on the size of dog you are looking to get, you are committing yourself to a family pet for at least ten years.
More walks were in our plan
We looked at our family setup and reviewed what type of dog would be best for us.
Due to our busy lives, we wanted a dog that was easy to train and would interact within our family unit.
Rhys loves motion and momentum, so a dog who would enjoy running and returning objects felt to be the best option for us. This would provide opportunities for engagement and play.
Originally we were thinking of a medium-sized dog, but researching the benefits of dogs and autism, a large dog can provide deep pressure sensory input that a smaller dog would not necessarily be able to achieve.
After all our research we settled on finding a gun dog. A dog who would be willing to retrieve objects and interact with our son…
…and a golden retriever came top of the list.
2. Visit The Puppy
Once you have made the decision to get a dog, make sure you follow all the general dog advice. There are many illegal puppy farms which disguise themselves as good loving homes. Cute photos of puppies can sway any interested buyer, so make sure you check the breeder is legit and not selling you a puppy that is going to cause you problems in the long run. A good checklist can be found on The Kennel Club website and will give you sound of mind that you are getting the right puppy.
Once we had found some Golden Retriever puppies we immediately got in contact with the breeder. After the general checks had passed, we asked for photos that we could use to show Rhys prior to the visit.
Albus at three weeks
Showing my son the photos and videos of the puppy helped him understand what was coming and the changes that would soon be in our home. Prepreparation is important, and dependant on your childs level of understanding, make sure you communication the changes that are due to happen in your home.
If you are unable to get photos of your future puppy, Google images will work just the same.
3. Start With Segregation
We never had an instant bond between our Golden Retriever puppy, Albus, and our son, Rhys. To put it simply, it was carnage!
Albus was into everything and doing all the standard puppy pasttimes. He chewed, and jumped, and snapped at the kids like they were part of his puppy pack.
Rhys grew more and more terrified of Albus, that we had to segregate them before we created a permanent division and between them.
Bonding cannot be forced, so we zoned off our house with stair gates and closed doors. It was not the situation we expected ourselves to be in. We thought a dog and our son would have an instant bond – that’s what all those stories had said in the Google search feed!
Segregation became a key step for us, meaning Rhys could feel safe in his own home and approach Albus on his own terms.
4. Train from Day 1
Puppies are unpredictable. After being wild amongst their brothers and sisters for eight weeks, they believe you and your children are puppies too.
Albus was very jumpy and used his jaws in every attempt at play. A golden retriever is not a small dog, even when only a few months old, and we, therefore, had to address his behavior early on to make sure there was the hope of a bond between Albus and Rhys.
Albus on his Training Lead
We purchased a training lead that would allow us to control Albus in the house. A training lead is a long lightweight lead that attaches to the dog’s collar. The lead meant we could easily hold Albus back if Rhys entered the room, and also use it to teach him the first few commands that would allow him to understand his position in our family pack.
We used the McCann dog training videos, which were easy to understand and allowed us to create a good foundation for Albus to be trained and calm inside our home.
5. Let Your Child Approach On Their Terms
We now had a calm safe space for Rhys, and through the training, Albus knew his position in the family hierarchy, allowing for a calm home that now included a Golden Retriever.
The control meant that when Rhys entered the family space, he did not have a dog bounding towards him and causing distress. With this calm environment, Rhys began to venture back into the family space.
The progress we had made, took only a couple of days. We had moved mountains in less than a week.
There is something wrong with this picture?
It was important to not force Rhys to come into the same space as Albus. We needed to create an environment in which Rhys felt safe coming into, a calm space where the new creature was no longer a threat.
He was then able to approach on his own terms.
6. Integrate Your Puppy Into Everyday Activities
From this point on we continued to integrate Rhys and Albus. Dogs need walking, and this turned into a daily family activity.
In the beginning, Rhys walked with us, Albus being at a distance and not something he wanted to be part of. But over a few days, we managed to encourage Rhys to take the lead and be part of the daily strolls.
Rhys found the tension of the lead and the pull of Albus extremely satisfying as a new method of sensory input. His face radiated with excitement and there was a walk where he laughed the entire journey up to the park.
Walking with the Sweetie Rope Dog Lead
To make sure Rhys was safe walking Albus we purchased a Sweetie Rope Dog Lead, which had two handles, allowing us to hold the long end while Rhys could gain confidence in the new role.
7. Extend The Routines
As Rhys and Albus slowly became happy within the same space we were able to gently push forward into new opportunities.
With Albus now trained with the Stay and Sit commands, feeding him became a calm activity that Rhys could become involved in. We also encouraged Rhys to give his new companion treats, helping Albus realise that Rhys was someone with something he wanted.
Feeding Albus for the first time
We did not have the immediate bonding experience in our family, but within a few short weeks, we were able to create an environment where bonding could happen and start to florish.
It is important to focus on the steps to create a calm environment before any interaction with a new pet can take place.
Come follow A&Me on all social media channels to follow the progress of Rhys and his Golden Retriever.
For every parent who has gone on the journey with their child to obtain an autism diagnosis, for every parent who has spent hours writing and reading reports, fighting with authorities and professionals, jumping from one appointment to another, and collating folders of evidence, getting a diagnosis for your child is not easy, but once you are handed the piece of paper, we expect it to open doors and give us guidance on moving forward. Often it doesn’t. Often parents are left more lost and confused about where to turn, left with a piece of paper and no roadmap, no direction. Here are five things every parent needs to know to move forward with their child’s autism diagnosis and continue on the path to supporting their child in being the best they can be.
1. Get a Special Needs Health Visitor
Every child is assigned a Health Visitor a few weeks after birth, but this support is only provided until the child starts school. Our children who need more support, have the opportunity to be assigned a special needs health visitor who they will have until the age of 12. Special Needs Health Visitors are able to share information about services, benefits, local support groups, and most importantly initiate any further referrals for your child’s needs.
2. Get your child an EHCP
If your child needs additional support due to their diagnosis, it is vital you get this formally documented. An Education Health and Care Plan (EHCP) details your child’s requirements and the support they are to be provided. It is a legally binding document that will define the school which best meets their needs, allowing you to get the best education for your child. Schools can initiate an EHCP, alternatively speak to your Health Visitor, GP, or Pediatrician.
3. Apply for Benefits
There are a range of benefits for your child, some are financial whereas others are available to make your child’s life easier. One of the key benefits is DLA (disability living allowance), it is not means-tested and will not only provide a financial payment, but the benefit also provides a stepping stone to open further doors to support. To get a sample of the benefits available to children with an autism diagnosis click here.
4. Get on an Autism Parenting Course
Lonely is a word that every Special Needs parent has conveyed. The feeling of being the only one trying to parent in a world that is so new to you. The first task is to get yourself educated. Start to understand how you can help your child and the strategies and techniques to allow them to cope in this scary world. The National Autistic Society runs a parenting course called The Early Bird and is available across many locations in the UK. If places are not available, there are many local courses that will teach you what autism is and how to engage and interact with your child.
Learning is vital, but the second benefit of a course is the people you will meet. You will be able to find support from other parents going through the same journey as you. Nothing is better than someone else who understands.
5. Social Worker
Lastly, every parent needs a break, but this is even more important when you have a child who demands your constant support. Support workers are able to arrange respite for Special Needs Parents. Speak to your GP or Health Visitor about getting assigned a Support Worker. Getting time to yourself, so that you can recharge, is vital to ensure you can be the best for your child.
It was a lonely experience, as I watched other parents in play groups laugh while their children screamed, rowing their boats down a stream, or leaping up from the floor as the group leader shouted “wake up bunnies!” My boy was oblivious to any of the surrounding noise and interaction, he just sat and spun wheels on a car. A car which I had had to fight the playgroup leader to leave out after the previous game of tidy up.
As the song segment came to an end, I picked up my son and nodded goodbye to the other parents. They would wait around chatting and arranging visits to the park, as their children chased each other, developing friendships that would last a life time.
We left and I sat in the car, feeling the tears well up in my eyes, other times when the tears didn’t come I would uncontrollably hit the steering wheel in a bid to realise the anger and hardship of our situation. I had no control of which direction my brain would decide to release it, my body always just took over.
Then I remembered a nursery worker’s words from the week before. I took a deep breath and turned the keys in the ignition.
“Sing to him” she had said. She explained the interaction of singing, the tune and the vocabulary all combined together. “He will start to interact, then hum the tune, and who knows, maybe add some words in time” she had added.
So I open my mouth and through the sobs I sang! And I didn’t hold back. I only had one audience member, and any reaction would have made my day.
But nothing happened that day. I constantly flicked my eyes up to the mirror to seek any engagement, but there had been none, my son just continued to stare at the seat in front of him. I did however feel slightly better after a good belt out of “She’ll be coming around the mountain”, by the time I got home I was in full on performance mode.
Even though I didn’t get interaction or even a flick of eye contact from my back seat passenger that day. I never gave up.
I kept singing.
I would sit him on my lap facing me, and do every nursery rhyme and children’s song I could think of. Over time he began to look at me, and then allow me to show him the actions with his hands.
I sang all the time, wherever I went. I was Maria, just without the guitar or perfect pitch! After months of solos and crazy individual hand jives, one day my son gave me his interaction. His reward back for all my singing.
As he sat on the carpet clutching Teddy, I watched him rock back and forward to the rhythm of my voice. He listened and did the actions. There were no words, but after every verse he would look towards me for more. It was the first step to an amazing journey.
That was three years ago, and today I don’t sing as much as back then. My pitch is still pretty shocking, and Rhys is only accepting of the perfect note.
He however sings every day a tune he has learnt or something from the back catalogue. I love to sit outside his door, in an attempt to not disturb him and listen to his singing, remembering all those hours I dedicated just a few short years ago.
Never give up.
Always remember to ignore strange glances from neighbouring cars when waiting at a red light and rocking the latest nursery rhyme. Trust me, you are having a lot more fun than they are. Also you most probably will never see them again.
Belt out those tunes. Its worth it.
Music is magical, even when you are a bit out of tune.
An Autism Blog creating awareness one story at a time
