This week as you may or may not be aware is Learning Disability week and up and down the country people are using their voices to get people in power to help tackle the myths and misconceptions about learning disability that fuel prejudice and inequality.
If you want to learn more about Learning Disability week and how you can help you can head over to Mencap’s website here. Also if you are looking for support or advice do head over.
Now for our guest post
When my 3rd daughter was born I became aware very quickly that something wasn’t quite right with her development or behaviour. She was a sickly child who didn’t thrive, feeding her was an issue as she appeared to not like food. I spent many months taking her backwards and forwards to the doctors but was treated like an over protective mother. She didn’t gain weight or reach her mile stones as she should, and ended up being admitted to hospital on several occasions but no conclusions were ever given.
I had no support or help, I called the Health visitor at one time in tears, she didn’t even arrange a visit.
We muddled through to nursery age and having put her name on the waiting list of the local nursery she was given a place. This was probably the first time that someone listened. The nursery arranged a speech therapy assessment and for her to go to the local centre to have a formal assessment.
I was fully aware that my daughter was different but having had no experience at all with Learning Disability I was completely lost.
I was still under the impression that she would be fine I fooled myself into believing that she was just a bit slow with, I thought with some therapy she would be fine and catch up.
Her development was slow and each mile stone that was reached was well behind what it should have been. She started a main stream infants school with a support worker and muddled through it. But it became apparent when she was due to transfer to the junior school that it really wouldn’t work her level of ability was so far behind that I was now extremely worried about her future. But still no support no advice was forthcoming. I visited the local special school, I cried when I got home but the staff were kind and caring and I knew she would be safe there.
I had started work at a local stay and play and received lots of personal support there from the manager at the time. She spent time listening to my worries and concerns and was there for me. Looking back I realise what a support she was.
We settled into many years of coping. My daughter continued to develop slowly but surely, developing epilepsy along the way. Hospital visits became part of normal life over the years I think we have been to most departments in the L and D. and several London hospitals.
My family life could be hard, younger members of the extended family over took my daughter in development and I found it hard at family gatherings when nieces or aunties would tell her off. They had no understanding of her issues or problems. The sad things was, I felt they didn’t try to understand. They like us had no experience or had not known anybody else that had a disability especially one that had no physical signs.
I did have some friends, one in particular who when my daughter reached 16 years old phoned social care and passed me the phone. For many years she had been nagging at me to get some help and support as it wasn’t offered, I thought I shouldn’t have it.
My first experience with Social Care wasn’t all good. They came for a home visit and asked me what I wanted, well how did I know what I wanted, I didn’t know what there was available. Right from then which was 13 years ago I realised that there was no one that would offer you that information, no one who would tell you what you could access if you needed to.
At work I had started naturally to support parents that had younger children that had an issues. I used the little experience that I had to help make their lives a little easier. At the first opportunity I trained as a family support worker this helped me personally and professionally and I stayed in that support role for many years.
My daughter left school and went to college but had little social life. Our family life changed when I bumped into a parent of one of my elder daughter’s friends in ASDA one day. She helped run LUTON MENCAP and told me about some of the things they had on offer. One of them was a drama group which had a waiting list, after listening to our story, still in ASDA, she jumped that waiting list and our families’ connection with LUTON MENCAP started.
I started volunteering at the drama club each week as I saw what a great service it was but how little support it had. Luton Mencap also ran a monthly disco and again I heard myself say I don’t mind helping. Although my daughter had found meaningful things to do it was a hard time for me I liked being able to talk to others that understood but I found it hard seeing the lack of services that were on offer for people with Learning Disabilities.
During that time my family became friendly with another family and after many months of talking we got together and opened an evening youth group that is still running and in its 10th year.
My daughter attended day provision in Luton, it wasn’t ideal but it was somewhere safe for her to attend during the day.
When Luton council started looking at its service and how to make them more efficient myself, and my friend who had started the youth group set up a day service. We believed so strongly that people with Learning Disabilities deserved somewhere to go during the day that offered meaningful activities, that we both left secure jobs to do this.
Now nearly 2 years later the service has done so well we have had to start a waiting list. We also provide a carer’s support service as there are so many people who need a listening ear, someone to point them in the right direction so that they get the help advice and services that they are entitled to and deserve.
Our lives are very busy. During the last few years my husband has become very involved too, we volunteer several times a week for different charities.
We have ups and downs. Life will never be boring, we are proud of what our daughter has achieved. She is a happy young lady with lots of friends that keeps very busy with all the things she has to do.
We are very much part of the local disability world. It never fails to amaze me how little parents and carers still don’t get told and we still have many hurdles to climb personally and professionally.
Thank you to Jeanette for sharing her experiences with us on the blog, I wanted to share a video from the local Mencap group my brother helps at.
I shared this on my blog social media when it was first published and I think everyone needs to have a watch of it!
Let it Go at the AGM
Posted by Luton Mencap on Monday, 23 February 2015
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