REVIVE

 

Support group for parents of children with additional needs

November 2022 saw the launch of our brand new support group ‘Revive’. This was something placed on my heart by God as I personally felt called to help others that were going through similar thoughts and feelings to myself.

 

Having a child with additional needs can leave parents feeling very lost and lonely. I have had to fight the education system since my child was two years old because others didn’t see the same thing that I did, and I often felt judged and deemed a bad parent by professionals. Over the years my family showed me a massive amount of support and as I had worked in schools for many years, I was able to identify some of the characteristics of autism in my child. Right from the age of two I made lists of behaviours I was seeing which all linked up to the autism spectrum. Because my child would mask his behaviours in pre-school and when the health visitors came round, it appeared like it was just me and it was my fault. When school started things only got worse at home and more violent outbursts were seen. School would assure me that he was ‘fine’ and I should be happy that he is displaying his behaviour at home because it means he is in his safe place. Whilst I understood this it didn’t mean that I had to endure being kicked and punched every single day after school or that this kind of behaviour was ok. Sometimes we wouldn’t even get to the school gates and he would be lying on the floor screaming and shouting. One day I was able to fetch the Special needs co-ordinator and she witnessed his behaviour. She agreed that a referral needed to be made and after a GP visit he was placed on the paediatrician waiting list with an estimated two year wait. Then COVID hit.

 

I look back now and wonder how on earth I got through each day. I made visual timetables, role play areas, devised outdoor learning activities and endured meltdowns like you couldn’t imagine. I found myself often hiding in the toilet just for a minute to myself or just to cry because I felt like I couldn’t cope. The violence, the shouting and then I found he had begun self-harming by biting his own arms. I tried on numerous occasions pleading with the paediatric department directly for an earlier appointment but I never had any luck. I made countless self-referrals to children’s mental health service only to be told I needed a paediatrician to refer me. There was no school, no family to go to, (as we were not allowed in lock down) and I felt so desperately hopeless and depressed. I did know that I had a God who would never leave me or forsake me and I believe that if I hadn’t of had that faith I wouldn’t be here today. 

 

I eventually was allocated a family and wellbeing worker who kindly came over to our house and assessed our needs. I was given a lot of praise and encouragement for my work with my child and told I just needed a ‘confidence boost’. After four weeks the visits stopped and I was informed that I was doing such a good job I didn’t warrant the support. To say I was broken was an understatement. Despite my best efforts with my child he was still violent, still struggling and not sleeping. It quickly dawned on me that this was just as hard for Aliona as she was witnessing all of this and also seeing me fall apart. Gary was my rock but he felt just as useless as I did, not being able understand how to help our child. 

 

When lockdown ended and we could see our family again it was easier and it made me think about how many other people must be going through similar things with their children but maybe have no family or support. There is no help available to parents because there are so many people in need that the NHS is simply overwhelmed. The amount of children with additional needs has increased dramatically but the number of paediatricians hasn’t. So many families are struggling and with nowhere to turn.

 

After lockdown we received no support from school as our child was simply ‘fine’ in class. Gary and I prayed, we got our friends to pray and we made the decision to move E to a different school and start again hoping we would get support. We also put him on a private assessment waiting list and continued praying that when an appointment came up we would find the money somehow. Part one of the assessment was £1300 and we were thankful that an appointment came up in just 3 months. I posted an update on my facebook page that I was so happy to have an appointment but that both Gary and I would be working continuously for the next few years to pay it off. Within 2 days I received a message from a parent of a student I used to teach who wanted to bless us with the money for the first assessment. This is always a hard one because I absolutely love giving but find receiving really difficult. The couple were Christian and we allowed them to bless us with the finance. This was a huge burden lifted and so the assessments began.

 

E's new school assured us that once we had a diagnosis they would be able to put support in place. I am still confused as to why alot teachers don’t trust what parents tell them. Parents have spent more time with their children and can give a clear picture on attitudes and behaviours they have seen. Masking is a common factor in autism yet not many teachers in mainstream school seem know how to deal with it (in my experience).

 

Sure enough we entered the second phase of assessments for autism with E as they had enough evidence to think he could possibly be on the spectrum. Again we had no reason to worry because Gary’s parents offered to pay the addition £1600. This included seeing two separate educational psychologists for lots of tests, and an occupational therapist visiting school. The report was efficient and quickly came back that E was on the Autistic Spectrum. We cried. We cried because we had an answer, we cried because we knew we had done the right thing, but mostly we cried because our boy was still struggling.

 

Since this diagnosis in May 2022 I have continued the fight. School have given a tiny amount of support and because he is academically able we have been turned down for an EHCP. I know wholeheartedly that a school designed for pupils with autism would be best for Elliot but because he is clever and not under achieving it is a huge struggle. Yet there are schools that are for more able children with autism that have spaces, but to get a place you need an EHCP and to get an EHCP you need to be able to prove that the child is not making academic progress.. does any of this make sense to you? And so the battle goes on…..

 

Please pray for revive, it is a hugely needed and I have a big vision for it. Pray for everyone that comes, and if you can support us in any way whether that be financially, providing breakfast or an item for the gift bags each month please talk to me or Becca. Thankyou all so much.

 

Laura x

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