Layla

I have two daughters and two bonus sons, at two I recognised some autistic traits in my daughter, but it was almost impossible to get any professionals to recognise my concerns and refer her. I worked with her at home on socialisation and acceptable social behaviours, such as not licking strangers, we did academic work and practiced coping with sensory overload. I home-schooled for a year but family breakdown forced me to work more to support my daughters, we moved to find the perfect school to support my girls’ needs. Her first day at school with a fantastic teacher was all it took, she agreed, understood my concerns and referred my girl.

The months of diagnosis were hard, emotional and lonely and it took until she was seven. Despite the fact that I had known she was autistic since she had been two years old, it was still hard to hear, the grief of the diagnosis still hit like a hammer. She is amazing but despite how far she has now come, we are still walking this road. We now need to prepare for the day I tell her what her superpower is called.

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Sue

I have two parents and a mother in law that I care for all over the age of 86. Life can be difficult for them losing their independents, their mobility and their health. Over the last three years their reliance on me has increased as they become frailer. As a carer it’s a constant juggling act with work, my home life and the needs of the three people that mean so much to me.  They feel guilty for having to ask so much of me, and I feel that I don’t give them enough. It’s hard as the children to now be the parent! 

What I have learnt from these last three years, is it is also important to take care of myself too. You are no good as a carer if you are burnt out. I grab every opportunity to try to make time for me and accepting help when it’s offered. There’s nothing like a trip to Diss Auction to give me that escape! Talking to others in the same boat, sharing the many lows and of cause, those special highs makes life better for us all.

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Simon

Unbeknown to me, life as a carer first started when I was 12/13yrs – somewhere about then anyway.  My Nanna had alzheimer’s and through this because of her condition moved from Bradfield St. George (Suffolk) to Ffostrasol (Wales) which was a 546 mile round trip.  Going with my Dad and family to help him support my Grandad.  Later through life, my Dad had Cancer and now I have a Mum who’s eyesight is deteriorating with trips to hospital and a son who is on the Autistic spectrum.

For my son specifically, he’s now 19yrs.  We actually didn’t know, become aware or get diagnosis until he was 17yrs.  And you kind of this “how bad are we as parents?!”  All that time and we didn’t think about his behaviour and ways being so different.  But with his mum and I having parted ways when he was 1yr (we get on well though), we put it part down to that and him spending time between us both, plus the teenage years.  Thankfully his college tutor noticed.  Since then life has been so much different.  Importantly he knows why he acts differently, which helps immensely.  It can be tough, but it’s still easier.

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Rebecca

I am mum to George, a teenage lad with a muscle wasting condition called Duchene Muscular Dystrophy. DMD is progressive and therefore the level of care he needs increases every year.  We had some struggles with schooling but have been lucky to have an experienced and diligent team of health professionals on board.

As a carer I have endeavoured to keep working part-time but often feel pulled in two directions (time off for appointments, paper work, EHCP meetings, wheelchair assessments, splints).  It is upsetting that he is not able to hang out with boys his own age and is losing his independence as his peers are increasing theirs. I would love for him to be able to access a suitable youth club.

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Leila

I’m Leila, myself and my husband have Drew aged 8 and another son aged 6.  Drew has severe epilepsy, global development delay and attends a SLD school.  Drew cannot communicate verbally, babbles and learnt to walk at the age of six and a half, more of a toddle. He can only do this in a safe environment.  His seizures and learning difficulties make doing day to day things quite hard, even getting to school can be a struggle.  Drew needs help with every aspect of life, personal care, playing, feeding, changing, bathing etc. He cannot be left unattended anytime due to his health conditions. He is on a complex medical diet called the ketogenic diet and has a gastrostomy.

We love family days out, holidays like Centre Parcs, walks and lots of swimming works wonders.  We don’t tend to go out at the weekend often, and only stick to activities that suit our time limits, attention and ability.  In our area there are more clubs for mainstream children.  We would love groups benefitting us as a family, sibling care support groups also.  Both my husband and I work, therefore feel out of the loop on what services are available.

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Katie

Our five-year-old daughter Addie acquired a brain injury in 2014. Life has certainly not been the same since. Living with daily, uncontrollable seizures and a complete change in personality makes family life more challenging, especially for Addie’s twin sister Izzy. Finding the right kind of support has been difficult and there aren’t enough facilities to give Addie the life she deserves. She doesn’t attend any after-school/weekend clubs because of her complex needs and her life is markedly different to that of her sister’s. it’s heart-breaking.  My hope for the future is that one day there will be more opportunities for awesome children like Addie to excel.

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Hannah

I’m Hannah and am mum to 4 sons, 3 who live at home, one of who has additional needs. Our youngest son Isaac has severe learning difficulties and mobility issues. We try and have as normal a life as possible and with boys we need to get out and about as much as possible. The main issues we face is finding something that is engaging for everyone especially in the winter months and the physical demands of pushing a wheelchair/toilet training/keeping Isaac stimulated if the other children are doing something that he struggles to join in with.

Often events are for disabilities or not disabilities, but we love it when we find inclusive places to visit where we can all join in together.  What is difficult is sometimes when you go out with friends and the other mums are sitting chatting as their children have become independent, but you are still looking after your child even though they are the same age. Generally, we find people helpful and supportive, but it is hard as the child becomes older to ask others to help look after them as it’s harder for others to manage.  The plus side is that we get a lot of love from Isaac and have great family times together. Just different than we expected!

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Gail

As a loving parent, you want your child to have the best in life, getting a diagnosis is to get the right support, to achieve their hopes and dreams, not “labelling” your child for fun. With my son’s diagnosis it felt like I’d stuck a big fluorescent note on his forehead “ I have Aspergers”.  Guilt, doubt, but knowing it’s the only way to get support, then dealing with my estranged husband being in denial, blaming me.  Guilt because I hadn’t noticed the signs before, turning to anger when my ex’s parents asked, “Does that mean he’s remedial then?” I replied “no, he’s a child genius actually!”

Other’s ignorance is harder than dealing with the child themselves.   Leaflets of groups were offered, but I didn’t want to listen to other parents talk about their guilt! After diagnosis, the health visitor supported, but mainly support was from the School SENCO.  As a parent carer, particularly a lone one you just want someone who understands and listens.  Ten years on, independence is the new focus, with the right life skills and support network, I know he will achieve them, me, I still strive for awareness that being different, isn’t being less.

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