(before i begin this is a blog written by my wife recording the experiences of how hard it is for people to get help for both child and the parent of special needs children in the UK)
Hello, I am L I am the Mum in this neurodivergent Family. I was officially given a diagnosis of ASD at the grand old age of 28 . I am a very unusual character I hate to be centre of attention and very much struggle with social and communication. I love my quiet nights and days in the family home. I like to watch programmes like sewing bee, great pottery show down and really love fly on the wall documentaries. I suspect that is the last thing that people would think though upon seeing me in person as I have a very unique dress style, I wear brightly coloured tights with t-shirt dresses and unique boots, my hair is often even scraped in a bun or tamed to the best of my ability into a plait. My hair is very long due to my sensory difficulties meaning i struggle with hairdressers. I am not a girly girl never have been never will be, the thought of having a girl even scared the bejesus out of me so much so I was more than relieved to have been blessed with 3 wonderful boys ( 4 if you included Mr P). I am not an ambitious person and I have never had thoughts of being great. I have and only ever have wanted to be a mum , a supportive and loving mum. Events within my life have changed my view points a little. The situation with the abuse and FII claims threatened my dream of being a mum which is what has sparked a fire in me that I didn't even know i had a fire to help other Neurodivergent families to ensure they have the support they need and support them though the situations we found ourselves in.
Next up we have P the Dad of the Neurodivergent family. P was diagnosed Officially with ASD at the grand old age of 26. P always knew he was different it became strikingly obvious while serving in the RAF. After Honourable discharge from the RAF P really struggled to find footing in employment. It was his differences that employers often didn't like. Out of the box thinking was certainly not what people wanted. Funnily enough P found his place of work in a place that's highly unusual for a person with P profile of need. P worked in a call centre as a sales person. Now currently is a administrator for a company he used to be a seller for. P has what i would say the typical male Neurodivergent hobby of being a gamer that likes to stream.
First in I will talk about is our eldest J. J was diagnosed at 5 with ASD with ADHD like tendencies. School life for J hasn't been a easy one. getting a statement was pretty easy with J considering. Unfortunately I feel as a mother i have failed J. I feel guilty I didn't fight enough and feel I should have fought so much harder for him. Now in fairness to myself I did fail J but though no fault of my own. I was uneducated at the time I had no clues of procedures laws and what should have been done which is why I failed him. But J has turned in to an amazing young man. Yes he may not know which way his life's going ( who honestly does at 16) but he fights anxiety every single day and even when things are tough and hard he does his best to stand tall and carry on. People often tell me is a credit to me but you know what he deserve all the credit for being exactly who he is.
Next up we have W our middle son. W is a complex little boy . We have always know this from W being a baby, W was also 5 when he was diagnosed with ASD. When it came to W though it never felt right. NO matter what we did with W it never seems to help He always appeared as a very nervous scared little boy. He didn't for a long time have meltdown it was more so the way he would agree to everything but you could feel how unhappy or uncomfortable he felt. You could feel how he didn't want to agree but yet agreed to everything right off, W has a PDA profile which makes life a very complicated affair with him. Theres a lot to explain and a lot to get though which i will cover though out this blog as a lot is related to W sen and needs. W is a lovely funny very witty little boy who brightens up everyone's day. He ahs his own unique phrases and language that cant help but make you chuckle along with him, W is one of those children that you feel very lucky and honoured to know ( all my children are special in this way but as we go you will hopefully understand what I mean about w).
In the boys lastly we have H our youngest H is the only one considered not to be Neurodivergent although I do believe that there is some form of neurodiversity there. H is the one that is always there to help. He has so much compassion and so much love to share. He looks after W and is always there to help. H is the one there willing to help bring the shopping in, help with the cleaning, willing to participate in anything to help anyone. H is very much a perfectionist as well. H is a very typical little boy who you can find either up a tree or assisting the dog digging holes in the garden. I refer to H as being my saving grace as he develops as it helps me to feel less like a failure I can often feel with the other boys.
We then have the family pets.
Jet the 6 month old Labrador retriever that we have had 4 months. 4 very long months haha. But as much as hard work it has been Jet has brought a sense of calm upon the house. He has this way of just being there for everyone. With jets comfort W is even able to have times of calm and relax.
We also have 2 cats Edgar and Lucy they are 9 this year so feeling rather on the old side, they want the quiet life and love to sprawl out on the boys beds during the day.
So there we are that's this Neurodivergent family in a nut shell. I want to stress that this is a personal blog with very true and very real and sometimes very raw feelings. Not dressed up edited so sometimes it may some of the things written seem biased or they way I may describe one of my boys may seem odd like H being my saving grace but this will hopefully make sense to people on what my meaning though out the posts though out the weeks. sometimes we have to think outside the box and wait to understand and apricate another persons view and explanation of there meaning, We may all speak the same words but yet we never mean the same things.
Thank you so much for taking the time to share so much about your family and their journey through this crazy adventure called life!
I am very ignorant of the steps one must follow to get help for families in the UK so I am sure over time this will be a very insightful blog.😊
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This was very interesting to read! Thanks for sharing your experience, I hope a lot of people will find it helpful.
Also I think that your family seems pretty normal to me, living with these conditions for sure gives space for a lot of funny moments other families would never experience but in the end everyone wants the best for their children.
And to live a happy life. I am sure my parents often felt that they failed me but looking back I can just say they did not. I am quite sure that your kids will be looking back at the times and have nothing in their hearts but love.
Again thanks for sharing and waking my interest.
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