Emilia Rose's page
Emilia Rose Porter is raising money for National Autistic Society
Story
Thank you for visiting my Just Giving page. I am really proud to be running this year's Great North Run for the National Autistic Society. This is my third GNR, but my first for this charity.
I want to take some time to explain why I have chosen to support the National Autistic Society. It's a story very personal to us and I hope you will bear with me whilst I tell it.
My son, Seth, had a rough start to life. Without going into detail, born on the 6th July 2013, he was 262 days old before he came home on March the 27th 2014.
When my son came home, I noticed that his communication was not where it should be. I was frightened to labour the point with health care professionals in case they blamed me and said I wasn't good enough for him. But as the weeks and months went on, I could not ignore that something wasn't right. He did not engage in much eye contact, was very regimented in his play and didn't seem to notice other people. It was like he was in his own bubble.
I had seen it before. I have two older boys, both with an Asperger's diagnosis. I took Seth to the GP aged around 14 months and asked for a referral to CAMHS. We were seen quite quickly and the paediatrician agreed to assess him. The first round of assessments came back as "inconclusive"; he was just too little being only just two by that point. However, the paediatrician wanted to see him again six months later.
By then, Seth was in nursery where the staff did not believe he was autistic. They believed the communication issues were because of the trauma he went through as a baby being separated from me, his Mama. That was very hard to take. But I truly believed there was something more to it.
After the six month period, Seth was assessed again. This time it was conclusive and he received a diagnosis of Autism Spectrum Disorder in November 2016. I was expecting it, but it was still a shock and I still broke my heart. I worried about his future, what it would look like, whether he would ever live independently. I grieved, I felt cheated. Then I woman-ed the fuck up and got us some help.
Seth has an amazing speech therapist who has taught us both to communicate through PECS and Makaton because he remains non-verbal. This means he doesn't speak, not that he doesn't communicate. But when he does, it is extremely difficult to understand what he wants or needs and we both get frustrated. We try to use PECS and makaton to alleviate this. Sometimes it works, sometimes it just doesn't.
Seth has a special needs buggy from Wheelchair Services because he doesn't walk very far as he tires easily thanks to mobility issues. Seth also has no sense of danger. He will run into the path of a car in order to get to a puddle; water being one of his obsessions.
Toilet training is a no-go zone and we are waiting for help with that. I often half-joke that Seth is just like a gorgeous, innocent, bouncing 8 month old baby - with all the same physical needs - stuck in an-almost-4-year-old's body.
Seth struggles with food and food mixing, and everything must be laid out exactly the same way every day or he simply won't eat. He uses a juice cup because poor jaw control means he finds open top cups difficult unless I do hand-over-hand with him. Noise is a massive trigger, if there is too much he will get hyper-aroused and scream to block it out, or run backwards and forwards. Anywhere with crowds is avoided, which sadly means his siblings miss out on a lot. Most importantly, Seth struggles with change.
Life is sometimes extremely difficult - compounded by the trauma of what we went through during the first 262 days of life. We have received help from Occupational Therapy and Portage - and it was a worker from Portage and Seth's speech therapist who offered us a place on the National Autistic Society's Earlybird course - designed for parents of young children with an ASD diagnosis.
Despite having two older boys with the condition, I have learned so so much from EarlyBird. The course is clear and explained well and the exercises help to relate the learning to your child. I learned about and have started using Social Stories as a way of explaining change in particular to Seth. I learned about new methods around sensory issues, and why they occur, which has demystified a lot. I now don't feel as odd telling my son not to lick windows, for example.
The main thing for me though has been the opportunity to meet other parents in the same position as me. We have laughed together, cried together and supported each other. The framework given to us by NAS to do this has been invaluable. The support given to us by NAS has been even more invaluable. And it's not just now that they have helped me. I went to them back in 2011 when my now-almost-18-year-old, James, was diagnosed. I was completely ignorant of the condition and I'll admit I was scared shitless. James doesn't and can't live at home because of it and I was angry and confused, ashamed, and full of self-blame. I thought I'd caused it, by having him so young (I was 16 when I had my first and 19 when I had James), by being on my own, by having myself been in foster care without a family unit.
The NAS held my hand and over many weeks talked to me, educated me and listened to me. James is now headed to University to study law and I couldn't be prouder.
Now I want to give back. Running is my therapy, the only real thing I do for myself so this seemed like a good way to help.
I should point out that I have previously done a skydive for the National Autistic Society on World Autism Awareness Day 2011. It didn't end well. I broke my leg on landing. Am hoping the run will end better.
I would be grateful for anything you can donate to help a charity that has helped me to learn more about Seth, and about James and how best to parent them so that they are prepared for life. I hope I can do the National Autistic Society proud. Even a quid you give is a quid they didn't have before.
Thanks for reading.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
I want to take some time to explain why I have chosen to support the National Autistic Society. It's a story very personal to us and I hope you will bear with me whilst I tell it.
My son, Seth, had a rough start to life. Without going into detail, born on the 6th July 2013, he was 262 days old before he came home on March the 27th 2014.
When my son came home, I noticed that his communication was not where it should be. I was frightened to labour the point with health care professionals in case they blamed me and said I wasn't good enough for him. But as the weeks and months went on, I could not ignore that something wasn't right. He did not engage in much eye contact, was very regimented in his play and didn't seem to notice other people. It was like he was in his own bubble.
I had seen it before. I have two older boys, both with an Asperger's diagnosis. I took Seth to the GP aged around 14 months and asked for a referral to CAMHS. We were seen quite quickly and the paediatrician agreed to assess him. The first round of assessments came back as "inconclusive"; he was just too little being only just two by that point. However, the paediatrician wanted to see him again six months later.
By then, Seth was in nursery where the staff did not believe he was autistic. They believed the communication issues were because of the trauma he went through as a baby being separated from me, his Mama. That was very hard to take. But I truly believed there was something more to it.
After the six month period, Seth was assessed again. This time it was conclusive and he received a diagnosis of Autism Spectrum Disorder in November 2016. I was expecting it, but it was still a shock and I still broke my heart. I worried about his future, what it would look like, whether he would ever live independently. I grieved, I felt cheated. Then I woman-ed the fuck up and got us some help.
Seth has an amazing speech therapist who has taught us both to communicate through PECS and Makaton because he remains non-verbal. This means he doesn't speak, not that he doesn't communicate. But when he does, it is extremely difficult to understand what he wants or needs and we both get frustrated. We try to use PECS and makaton to alleviate this. Sometimes it works, sometimes it just doesn't.
Seth has a special needs buggy from Wheelchair Services because he doesn't walk very far as he tires easily thanks to mobility issues. Seth also has no sense of danger. He will run into the path of a car in order to get to a puddle; water being one of his obsessions.
Toilet training is a no-go zone and we are waiting for help with that. I often half-joke that Seth is just like a gorgeous, innocent, bouncing 8 month old baby - with all the same physical needs - stuck in an-almost-4-year-old's body.
Seth struggles with food and food mixing, and everything must be laid out exactly the same way every day or he simply won't eat. He uses a juice cup because poor jaw control means he finds open top cups difficult unless I do hand-over-hand with him. Noise is a massive trigger, if there is too much he will get hyper-aroused and scream to block it out, or run backwards and forwards. Anywhere with crowds is avoided, which sadly means his siblings miss out on a lot. Most importantly, Seth struggles with change.
Life is sometimes extremely difficult - compounded by the trauma of what we went through during the first 262 days of life. We have received help from Occupational Therapy and Portage - and it was a worker from Portage and Seth's speech therapist who offered us a place on the National Autistic Society's Earlybird course - designed for parents of young children with an ASD diagnosis.
Despite having two older boys with the condition, I have learned so so much from EarlyBird. The course is clear and explained well and the exercises help to relate the learning to your child. I learned about and have started using Social Stories as a way of explaining change in particular to Seth. I learned about new methods around sensory issues, and why they occur, which has demystified a lot. I now don't feel as odd telling my son not to lick windows, for example.
The main thing for me though has been the opportunity to meet other parents in the same position as me. We have laughed together, cried together and supported each other. The framework given to us by NAS to do this has been invaluable. The support given to us by NAS has been even more invaluable. And it's not just now that they have helped me. I went to them back in 2011 when my now-almost-18-year-old, James, was diagnosed. I was completely ignorant of the condition and I'll admit I was scared shitless. James doesn't and can't live at home because of it and I was angry and confused, ashamed, and full of self-blame. I thought I'd caused it, by having him so young (I was 16 when I had my first and 19 when I had James), by being on my own, by having myself been in foster care without a family unit.
The NAS held my hand and over many weeks talked to me, educated me and listened to me. James is now headed to University to study law and I couldn't be prouder.
Now I want to give back. Running is my therapy, the only real thing I do for myself so this seemed like a good way to help.
I should point out that I have previously done a skydive for the National Autistic Society on World Autism Awareness Day 2011. It didn't end well. I broke my leg on landing. Am hoping the run will end better.
I would be grateful for anything you can donate to help a charity that has helped me to learn more about Seth, and about James and how best to parent them so that they are prepared for life. I hope I can do the National Autistic Society proud. Even a quid you give is a quid they didn't have before.
Thanks for reading.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.