AUTISM AWARENESS WEEK
For this week to help raise autism awareness I will be posting a blog everyday to share some remarkable ladies and their journey through life as a mum of a child with Autism. Their challenges and their wins and to start the week off I am going to tell you my story.
Nearly 13 years ago I was pregnant with twins and at around five and a half months I became very unwell and was admitted to hospital. The doctors knew I had liver failure and that my spleen was enlarged but they could not find a cause. I was allowed home on bed rest and was told it was more than likely a virus and this turned out to be absolutely true!
However this virus I had was called Cytomegalovirus (CMV) which is extremely dangerous to unborn babies or people with weakened immune systems. You can get CMV at any age but many people are first infected during childhood and are not aware, a CMV infection for the first time is know as a primary CMV and it is thought that 50-80% of adults in the UK are infected with CMV. Whilst I was in hospital I was tested for CMV, however, to check to see if I had a primary infection a second blood test is required 11 days later, and this was not done.
Approximately two weeks later my little miracles entered the world, three months early and they were really poorly. My daughter arrived first and she was whisked away while I was taken to theatre as my son was not ready to join his sister. Thankfully we managed to coax him out without the need of a caesarean but he was taken away too and I did not even get to meet my newborn babies.
Nine hours later I was given some photographs of my little babies but nothing could have prepared me for what I was about to see. I was then taken to the NICU and informed that we were being transferred to another one out of county because there were not enough cots available in my local hospital for twins. We were informed that this would reduce their survival rate and that they would be transported separately. Amber went first and then we arrived not long after. Sadly my baby boy arrived in a bad way as his incubator had broken during his journey and he was cold on arrival. He struggled for his first few days but then he started to fight and breathe on his own, our first Kangaroo Cuddle was something I can not describe but it still brings me to tears writing this nearly 13 years later.
Once my son had stabilized it was my daughter’s turn to deteriorate, I watched my little baby girl go blue, stop breathing and having to be “bagged” to revive her. The doctors did not know why this was happening and at six weeks old she was put back into intensive care and we were informed that she was very sick.
My wonderful GP had been trying to find out what was wrong with me before the babies were born, he kept on testing my prenatal bloods and at six weeks old he had found out the cause. My beautiful babies had Congenital CMV (cCMV) and I had CMV, but at six weeks old it was too late for the twins to be treated with anti viral medication – they should have been given it at birth.
My twins came home just before Christmas after spending three months in the NICU, they both had their challenges and our time spent there was certainly a rollercoaster journey. Life settled down until my twins started their education, I could write a book on this alone, however another fight was about to happen, something that continues to happen throughout my son’s life. He struggled with his education and I was called into school many times to discuss his “behaviour”. At first the Head of the school, who was also the SENCO suggested that he may have Asperger’s and she thought he needed assessing. I used to manage a residential home for adults with autism and I had always known he had autistic traits. However his medical team had always said that it was because he was so premature and that he would take time to catch up.
The short version is that my gorgeous son was labeled as naughty and he was put on a high risk of permanent exclusion. My twins and youngest sibling went to a small village school with an awful attitude, little support or knowledge on what to provide for children with SEN. There was not a good rapport with the school and I had to complain about his education provision – this just seemed to make matters worse. I removed my children from the school after my youngest was bullied and hospitalised.
So I home-schooled my youngest three children whilst trying to find somewhere more appropriate for them. My son was diagnosed with ASD and the Communication and Interaction team assessed him at home. He started at a brilliant school which had a centre attached to a main stream school so my twins could be together along with their youngest sibling too.
During this time I was also very unwell and it turned out that I had a few chronic illnesses so I had to give up my job as a Psychiatric Clinical Nurse Specialist. I believe things happen for a reason and if my health had not deteriorated I would have struggled to support both of my boys. My youngest son also has learning difficulties and we have had a lot of educational challenges with him too.
My son managed very well in his new school, the centre was perfect for him and he began accessing his education instead of hiding under tables or locking himself in the bathrooms to play with the water to attempt to self soothe. He had an EHCP and all his needs were being met and reviewed, the centre staff found that he had a PDA profile and adapted his learning styles.
I set up a business around my boy not being able to sleep, I was diagnosed and life started to finally settle down. I had expressed my preference for a secondary school and this was a school most of the children from the Centre attended. I found out late last year that the school had refused to name my this school on his EHCP and that I would have to go to tribunal in the hope of getting him in on appeal.
The three months we had to wait were so very distressing, the local authority named a school with 1,200 children and said that it would be unreasonable public expenditure to name our preferred school. However his current school did not think it would actually go to Tribunal Court and told us not to worry. The LEA also informed us that this has never happened while they had been in post but they would liaise with the secondary school to try and work things out.
The situation went from bad to worse and we were sent all the paperwork for court including the cost reports. At this point I thought we had no chance at all of getting my son into his preferred school and the fight that I did not expect to happen would be lost.
I did fight and from somewhere I found the strength to write reports, seek advice and ask for help. I spoke to the National Autistic Society (NAS) who have offered support and advice, an article on my family was published in their YAM magazine and I found them to be so supportive. Then an amazing lady contacted me, she gave me more advice and support and helped me ask the Local Authority questions that really impacted on our case. I began to think that just maybe I could get my son into the school that I had chosen for him. I found out about the code of practice, I spoke to my MP and with the help from Parent In Need I put a plan of action together.
At the 11th hour the Tribunal was cancelled and my son got his place, which meant his twin sister could attend there too. I really thought that having an EHCP meant none of this would happen but I was so very wrong. Educational settings appear to be such a problem for parents of children with Special Educational Needs and I presume it is all down to money but our children deserve to have the appropriate setting to enable them to access education just like all children.
I hope sharing our story will help raise awareness for National world Autism Awareness Week.
For more on my Cuddle Bed story click here!
Here are the other stories from this week: