This title feels very apt at the minute, I feel as a parent that I am constantly try to keep my head above water. Raising special needs / disabled children is taking everything I have and the shore is...
This title feels very apt at the minute, I feel as a parent that I am constantly try to keep my head above water. Raising special needs / disabled children is taking everything I have and the shore is seemingly a long way away.
leanne BrownWhen you are a parent you not only have to keep on top of your own mental and physical well being but also the well being of your mini me’s. Sometimes this is fine, you potter along doing what you can, ensuring they are safe and happy. Other times you can feel like your in the middle of the ocean and have no idea where the bloody shore is or how far away safety is. This week has been one huge dip in the ocean for us as a family, everyone is on high alert, my other children are worried, my husband is trying to hold down a full time job while also trying to be there to support us all.
Storm clouds gathering this week – Leanne Brown
L has literally just turned 15 years old, was diagnosed with sensori neural hearing loss eventually aged 2 and a half years and given hearing aids, was then diagnosed ADD ( Attention deficit disorder) when she was 7 years and medicated. Diagnosed with Hypermobility, mild circulation problems when she was 10 years, finally won an EHCP when she was 14 years old to help with learning needs, memory problem’s and since the age of 3 years has struggled with self harm and low mood and finally after 13 years of being told to stop trying to put labels on her a doctor referred her for Autism assessments for social communication and other symptoms which she has struggled with.
She is 15 years old and has already been through so much already. Naively I was under the assumption that when I had children the older they got the easier it would become….how wrong was I!!!! 3 days ago L took an overdose of paracetamol.
How do we feel as parents?
Scared – what if it happens again now she has tried it onceOn high alert – literally can’t sleep need eyes in the back of my head, constantly need to know whre she is and what she is doingTrying to maintain a normal environment, keep the balanceConfused – with an open relationship, mostly 1:1 with both L and E how did we miss the signsAngry – I did get angry with her, I called her selfish, gut reaction and something I feel ashamed ofLet down by the system – referred to Point 1 in march 2020, first appointment july 2021, asked for help told not bad enough…… What the hell they need to be dead to be bad enough for help???Upset – I don’t know my head from my arse at the minute I feel sick, I want to cry and shout and screamResolved to do better – it is our job as her mum and dad to make sure she stays safe and doesn’t attempt to do it againI want to Big Brother the house so that I can keep an eye on everyone I want services to listen and to not just tell ME I need to do yet another parenting courseMost of all I want L to be happy and healthy and to lead a long long life doing what she lovesHaving more than one disabled child in the house – 3 have hearing loss,2 on the ASD pathway, one is waiting to turn 18 years so she can go on the adult ASD pathway, one diagnosed with ADD, and one daughter with NEADS – Non epileptic attack disorder brought on by stress) takes its toll on all of us. Contending with daily meltdowns, having to physically dress, feed and help with moods, challenges and live with the symptoms of ADD, Autism, deafness and special needs is exhausting at the best of times, How do you find it?.
With 4 children in the house its chaotic at the best of times, everyone has somewhere to be, hormones are raging and wow I mean seriously girls fight like cats, how no one has complained about the noise coming from our house I’m sure they can hear us in the next village!!! But in all seriousness sometimes I feel like I am not always on the ball, I loose my temper, I get annoyed but as parents my husband and I both try and do our best to not drop the ball and to try and keep on an even keel – to be honest right now that keel is upside down, inside out, but we have to remember:
we love our girls no matter whateven amongst the bad days of meltdowns, anxiety, tantrums, screaming and upset there are bright days of laughter and joyeach of our girls is individual and beautiful and have all achieved something in their own right that is amazing M got a job and completed her first year of college, C despite the NEADS has a job and is starting college in September, L was given house captain, friendly face and prefect at school for her last year, she’s also been promoted at Cadets, she’s amazing with her younger cousins and is the most amazing friend and E who struggles so much with school has promised to give high school a try, has won players player of the match at football, made some epic goal savesWe have some most amazing family and friends who are there when we need them even though its difficult for us to tell them everything, but they don’t judge, help where they can with some respite, adviceSelf harm and suicide attempts are not something to be taken lightly but how do you achieve that balance of being parents, keeping them safe and helping your children to process their emotions and feelings in a safer way? the short answer is I haven’t found the wonder cure yet……there isn’t a cure, there’s suppose to be help from specialists but L is already in the middle of counselling sessions and still this happened – being taken away from us is not the answer but neither is doing nothing at allMake each day count, we have always tried to give the girls encouragement and something to focus on Love – love isn’t all they need but its the biggest most single thing that we as a family can offer our children unconditionally Make sure to LOOK AFTER YOURSELF!!! – you ned to remember to take care of yourselves, if you need 5 minutes take it, if you need to cry then do it, that goes for dads as well as mums, mostly do not blame yourself, this is the hardest thing for me personally – not to blame myself, its instinct something goes wrong you blame yourself but even though I don’t believe it sometimes ( most of the time) we have to remember it is not our fault.
The girls
I suppose I’m writing this as its another drop in the ocean on our journey as a family, and I want to share our experiences in the hopes that someone who isn’t as lucky as me with family support can feel my hand in the darkness and know that there is someone there, who won’t judge.
XX Leanne XX
