World Autism Awareness Week
In aid of World Autism Awareness week I will be doing my full days work, including postal round dressed up as Spiderman on April the 1st. Why? One of Gracie's best friends, Tyler was diagnosed with autism after developing symptoms four years ago. We have watched our best friends struggle with a system that is supposed to help these children. Spider man is his favourite super hero so I am proud to be raising awareness in his honour. All donations will go directly to his school, Linden Bridge. Here is their story......
Let me introduce my first born, my boy, Tyler ♡ So beautifully loving, caring and affectionate with just one or two differences...
Four years ago, he changed. He suddenly appeared empty - emotionless, as if the lights were on but no one was home… How do I even come to terms with the grief of losing a child that’s standing right in front of me?
Our journey began around Tyler’s second birthday when he wasn’t his normal chatty self. I noticed his speech had started to rapidly deteriorate and in a matter of months, he was completely non-verbal. He appeared inattentive and disengaged; he wouldn’t even look at me, he had stopped listening when I called his name and began having uncontrollable meltdowns. He would display repetitive behaviours, dislike certain textured clothing and have extreme sensitivity to noise. It was apparent that Tyler was having difficulties regulating his senses. He would become so distressed for no apparent reason - even turning the car around would trigger the mother of all meltdowns! I was desperate for help, my sweet boy was disappearing before my eyes. And I was left to watch helplessly.
Before Tyler’s diagnosis, we were completely messed around by professional services... Initially, specialists claimed he was simply ‘playing up’ due to the birth of his baby sister and perhaps ‘he wasn’t socialised enough’. But deep down, I knew this wasn’t the case. We were wrongfully referred for an autism assessment on 5 separate occasions by the GP and two different Health Visitors! I had also attempted to self-refer, but this wasn’t accepted. I then contacted PALS and NHS England in a desperate plea for help but nothing surfaced. We were then wrongfully advised that the NHS couldn’t help us until he turned 6 years old; our GP then suggested we pay privately.
We were desperate for a diagnosis in time for when he started school - with the hope he would have access to any additional support that he needed. We proceeded to spend thousands of pounds for multiple private assessments at Great Ormond Street Hospital. However, we later discovered that the NHS wouldn’t accept a private diagnosis.
I remember crying. Crying every single day. I would sit behind my sofa, where the kids couldn’t see me and sob my heart out praying Tyler would talk to me again and praying that he didn’t have this life long condition! His behaviours were all pointing towards Autism and I had read that the earlier you intervene, the likelihood of their behaviours being more manageable. We continued with private weekly Speech Therapy which although didn’t directly help with Tyler’s speech regression, it taught me techniques and strategies that I still use today.
After 18 months of persistence, the Community Paediatrician at the White Lodge Centre had finally diagnosed Tyler with ‘severe autism and regressive speech & language skills’ and more recently ‘ADHD’. We were given a few leaflets and left with no direction on what to do next.
I later discovered the diagnosis didn’t mean much at all and I should have spent my time fighting for an EHCP (Education & Health Care Plan). Without this Tyler wouldn’t have access to any specialist schools or the additional support needed to cater to his complex needs.
I had enrolled him into a mainstream Nursery attached to a school, hoping they would assist with his EHCP application... if anything, they made it worse, delayed the process and isolated my sweet boy.
Initially Tyler attended Nursery with limited 1:2:1 unqualified support provided by the schools discretionary funding. However, he was on reduced hours, excluded from most activities and was just occupied with the iPad most of the time.
I remember it was School Picture Day. I was asked if I could pick Tyler up (even earlier than normal) as Tyler’s 1:2:1 was helping the teacher take the other children into the hall to have their pictures done... I was so upset I didn’t even challenge it… He was excluded from the Christmas Nativity, he wasn’t allowed on school trips and wasn’t even allowed to participate in Sports Day! Parents Evening consisted of us sitting with the teacher in silence with no progression reports, no updates - nothing!
The school delayed the process in obtaining reports and collating evidence for the EHCP. We had missed the Specialist school application cut off date as a result and I refused to send him back to main stream. We applied for 9 special needs schools - unfortunately as most only have a maximum of 8 pupils in a year, all spaces were filled.
A year later from Tyler’s diagnosis, we received an email to say he had been accepted into Linden Bridge School as they were opening up an additional class for his year group. I cried so much that day - what a relief! For the first time ever I was going to get Tyler the help he needed!!
Linden Bridge is a fantastic specialist school catering specifically to those children with Complex Social Communication needs with an EHCP. Their values focus on teaching our most vulnerable the basic skills we need to live as independently as possible. I've never felt so supported like I do now. Tyler is taken on weekly school trips to the park/shops and garden centres, they have a hydro-pool therapy on site, forest school, teach self-care, Sensory based play, Speech Therapy, Occupational Therapy - everything!
Caring for a child with Autism has its own set of challenges. I find myself constantly analysing the surroundings - is it too noisy? too busy? can he escape? any roads nearby? What do I do if he runs off? Gets lost - he can’t talk? Where can I change his nappy? Has a meltdown? For these reasons I tend to avoid taking Tyler and his two younger siblings out on my own and this is why his School is so important in the role they play in our life.
Christmas and Birthdays are a particularly tough time of year; there is no build up, no believing in Santa, no early wake up calls, no pondering excitement from the night before, no countdown of days, no interest in unwrapping presents nor the toy inside them. The boxes lay untouched on the floor whilst Tyler is too busy stimming around the lounge. I can’t help but look at him and feel complete sadness, on his own, covering his ears and having a sensory overload trying to filter out the noise, the lights, the chaos.
Although, I can’t pretend that the future doesn’t scare me - will he ever talk again? Who will look after him when Im gone? Who will be his voice when he needs it the most? But if there is one thing I have comfort in, is knowing he is in the most supportive school who will help me teach and guide him into early adulthood.
Watching this little person inside deteriorate day by day and losing the voice he once had is beyond heartbreaking... but falling in love with the affectionate, loving, handsome little sole that he has grown to be has been made so easy... And maybe... just maybe... he will call me Mummy again. But until that day, I will be here, waiting patiently ❤️
There is no cure for Autism, it is not an illness; it is a lifelong developmental condition which affects around 1 in 100 people in the UK. It simply affects the way people communicate and experience the world around them; some are able to learn, live and work independently whilst many have difficulties and require ongoing support.
Although you cannot physically ‘see’ autism, you can certainly spot the behaviours… Most Autistic people display more obvious repetitive behaviours making unusual movements or noises. This may include rocking, flapping or jumping. This is known as ‘stimming’ and we all do it without knowing - Do you ever click your pen when bored in a meeting? Twirl your hair or bite your nails when nervous? Pace the room when frustrated? These are more ‘sociably accepted stims’.
‘Friends of Linden Bridge Charity’ is a body of volunteers, staff and parents who raise money for much needed events, equipment and resources that the schools budget does not extend do. Tyler, and and others alike, will benefit directly from any funds raised.
Help spread the word about Autism and the vital work that specialist schools, like Linden Bridge, do by getting family and friends to donate :o) They truly help improve the lives of those not just with Autism, but the families too.
From the bottom of my heart, thank you ♡
Sam x
Let me introduce my first born, my boy, Tyler ♡ So beautifully loving, caring and affectionate with just one or two differences...
Four years ago, he changed. He suddenly appeared empty - emotionless, as if the lights were on but no one was home… How do I even come to terms with the grief of losing a child that’s standing right in front of me?
Our journey began around Tyler’s second birthday when he wasn’t his normal chatty self. I noticed his speech had started to rapidly deteriorate and in a matter of months, he was completely non-verbal. He appeared inattentive and disengaged; he wouldn’t even look at me, he had stopped listening when I called his name and began having uncontrollable meltdowns. He would display repetitive behaviours, dislike certain textured clothing and have extreme sensitivity to noise. It was apparent that Tyler was having difficulties regulating his senses. He would become so distressed for no apparent reason - even turning the car around would trigger the mother of all meltdowns! I was desperate for help, my sweet boy was disappearing before my eyes. And I was left to watch helplessly.
Before Tyler’s diagnosis, we were completely messed around by professional services... Initially, specialists claimed he was simply ‘playing up’ due to the birth of his baby sister and perhaps ‘he wasn’t socialised enough’. But deep down, I knew this wasn’t the case. We were wrongfully referred for an autism assessment on 5 separate occasions by the GP and two different Health Visitors! I had also attempted to self-refer, but this wasn’t accepted. I then contacted PALS and NHS England in a desperate plea for help but nothing surfaced. We were then wrongfully advised that the NHS couldn’t help us until he turned 6 years old; our GP then suggested we pay privately.
We were desperate for a diagnosis in time for when he started school - with the hope he would have access to any additional support that he needed. We proceeded to spend thousands of pounds for multiple private assessments at Great Ormond Street Hospital. However, we later discovered that the NHS wouldn’t accept a private diagnosis.
I remember crying. Crying every single day. I would sit behind my sofa, where the kids couldn’t see me and sob my heart out praying Tyler would talk to me again and praying that he didn’t have this life long condition! His behaviours were all pointing towards Autism and I had read that the earlier you intervene, the likelihood of their behaviours being more manageable. We continued with private weekly Speech Therapy which although didn’t directly help with Tyler’s speech regression, it taught me techniques and strategies that I still use today.
After 18 months of persistence, the Community Paediatrician at the White Lodge Centre had finally diagnosed Tyler with ‘severe autism and regressive speech & language skills’ and more recently ‘ADHD’. We were given a few leaflets and left with no direction on what to do next.
I later discovered the diagnosis didn’t mean much at all and I should have spent my time fighting for an EHCP (Education & Health Care Plan). Without this Tyler wouldn’t have access to any specialist schools or the additional support needed to cater to his complex needs.
I had enrolled him into a mainstream Nursery attached to a school, hoping they would assist with his EHCP application... if anything, they made it worse, delayed the process and isolated my sweet boy.
Initially Tyler attended Nursery with limited 1:2:1 unqualified support provided by the schools discretionary funding. However, he was on reduced hours, excluded from most activities and was just occupied with the iPad most of the time.
I remember it was School Picture Day. I was asked if I could pick Tyler up (even earlier than normal) as Tyler’s 1:2:1 was helping the teacher take the other children into the hall to have their pictures done... I was so upset I didn’t even challenge it… He was excluded from the Christmas Nativity, he wasn’t allowed on school trips and wasn’t even allowed to participate in Sports Day! Parents Evening consisted of us sitting with the teacher in silence with no progression reports, no updates - nothing!
The school delayed the process in obtaining reports and collating evidence for the EHCP. We had missed the Specialist school application cut off date as a result and I refused to send him back to main stream. We applied for 9 special needs schools - unfortunately as most only have a maximum of 8 pupils in a year, all spaces were filled.
A year later from Tyler’s diagnosis, we received an email to say he had been accepted into Linden Bridge School as they were opening up an additional class for his year group. I cried so much that day - what a relief! For the first time ever I was going to get Tyler the help he needed!!
Linden Bridge is a fantastic specialist school catering specifically to those children with Complex Social Communication needs with an EHCP. Their values focus on teaching our most vulnerable the basic skills we need to live as independently as possible. I've never felt so supported like I do now. Tyler is taken on weekly school trips to the park/shops and garden centres, they have a hydro-pool therapy on site, forest school, teach self-care, Sensory based play, Speech Therapy, Occupational Therapy - everything!
Caring for a child with Autism has its own set of challenges. I find myself constantly analysing the surroundings - is it too noisy? too busy? can he escape? any roads nearby? What do I do if he runs off? Gets lost - he can’t talk? Where can I change his nappy? Has a meltdown? For these reasons I tend to avoid taking Tyler and his two younger siblings out on my own and this is why his School is so important in the role they play in our life.
Christmas and Birthdays are a particularly tough time of year; there is no build up, no believing in Santa, no early wake up calls, no pondering excitement from the night before, no countdown of days, no interest in unwrapping presents nor the toy inside them. The boxes lay untouched on the floor whilst Tyler is too busy stimming around the lounge. I can’t help but look at him and feel complete sadness, on his own, covering his ears and having a sensory overload trying to filter out the noise, the lights, the chaos.
Although, I can’t pretend that the future doesn’t scare me - will he ever talk again? Who will look after him when Im gone? Who will be his voice when he needs it the most? But if there is one thing I have comfort in, is knowing he is in the most supportive school who will help me teach and guide him into early adulthood.
Watching this little person inside deteriorate day by day and losing the voice he once had is beyond heartbreaking... but falling in love with the affectionate, loving, handsome little sole that he has grown to be has been made so easy... And maybe... just maybe... he will call me Mummy again. But until that day, I will be here, waiting patiently ❤️
There is no cure for Autism, it is not an illness; it is a lifelong developmental condition which affects around 1 in 100 people in the UK. It simply affects the way people communicate and experience the world around them; some are able to learn, live and work independently whilst many have difficulties and require ongoing support.
Although you cannot physically ‘see’ autism, you can certainly spot the behaviours… Most Autistic people display more obvious repetitive behaviours making unusual movements or noises. This may include rocking, flapping or jumping. This is known as ‘stimming’ and we all do it without knowing - Do you ever click your pen when bored in a meeting? Twirl your hair or bite your nails when nervous? Pace the room when frustrated? These are more ‘sociably accepted stims’.
‘Friends of Linden Bridge Charity’ is a body of volunteers, staff and parents who raise money for much needed events, equipment and resources that the schools budget does not extend do. Tyler, and and others alike, will benefit directly from any funds raised.
Help spread the word about Autism and the vital work that specialist schools, like Linden Bridge, do by getting family and friends to donate :o) They truly help improve the lives of those not just with Autism, but the families too.
From the bottom of my heart, thank you ♡
Sam x
Organizer
Alex Richardson
Organizer
England
Anonymous
Beneficiary