This is My Life……Mum in Nose Dive

Its me,

I’ve been so quiet lately and its time to admit that I am struggling. I am struggling to work, look after the girls, the husband, the house, the animals. I’m struggling to sleep and function, feeling like I am on the edge of a vast black hole. I’m so tired of fighting to get the best for my family, so tired of being told “no we can’t help” or “no you don’t meet the criteria”, “no we can’t do this” and “no there isn’t anything we can do”. The last month has felt like I have been hit from all angles, medically with my health, financially trying to budget as I haven’t been able to do the job I love as much, housing cause god forbid I live in a housing association house which is too small as we are always outpaced and out priced trying to get a mortgage and then when I had to give up full time work to be a carer well enough said, then theres the girls and their daily struggles with their disabilities, hormones, education and emotions.

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Photo by Pixabay on Pexels.com

You see my health has taken the proverbial dive and now everyone starts acting like meerkats sticking up their heads offering help when the time comes, waiting like vultures to see what my diagnosis will be at the end of the month and it makes me feel sick. We have never asked for anything, whats the point when there are parents with children who have bigger struggles than ours who don’t get the help and support and having tried to get EHCP’s in place twice I just gave up. Professionals always like to look like they are trying to help and refer you but after waiting months for a reply they come back with “your Childs needs are not bad enough” what the hell does that even mean???? why does everything have to take so long and why do they still never really listen to you?

Council has been at it with “No you can’t have a grant as your daughter already has her own room “- yes but we have two other disabled children in a room with their 3rd sister? “no we can’t help unless you are diagnosed with epilepsy then yes please do get in touch” – really whats the point? now all of a sudden theres a risk I may need help with my children and your willing to help us? no thanks we will manage like we always do.

Its hurtful and painful to be judged at every angle to be made to fit the same tick boxes as thousands of other parents and children who need support. We don’t all fit the same bloody box, we are all individual and its about time that someone in 2018 makes a change, is it any wonder that the mental well being of our children and their parents is taking a dive? I fully admit I am exhausted, I have looked after my disabled children for nearly 12 years with no support and I will be doing so for the rest of my life with at least one of them who will I suspect always need support.

My caring duties have been to learn how to clean and maintain hearing aids ( people go to university to learn this), attend countless appointments, meet with doctors and teachers, deal with behaviours that challenge, memory issues, and more besides. You ask for help and assessments but are told that because she has ADD they won’t assess her as “it won’t make any different” well of course it would, it would help us get the right support that we need to help us at home and in school. All this is going on and then another daughter is having the same issues and breaking my heart every day because she has no friends and no one understands her, she struggles educationally and emotionally, tells me she is rubbish and thats before they all have to stand and watch mummy having absence seizures. Can we get support for them? nope, not until its to late and I end up being diagnosed, then again what if its just stress (hoping it is) how am I going to make lifestyle changes to help reduce stress? Nothing is going to change, no one will help us……

woman holding her hair
Photo by Daria Shevtsova on Pexels.com

I really do feel like that abyss is getting ever closer and being housebound for the last couple of months yes I think I am going a little crazy, even without the car I still have to ensure theres food, the girls and husband have what they need, medication is ordered, appointments made, checked and kept, schools updated, work and try to live while feeling like I am sinking a little more each day. Everyone says they understand but they don’t really, professionals like to think they do as they have had to go to university to learn what its like for us. They don’t have to live day in day out with disabled children and guess what most of us parents who have done those parenting courses and have life experience and if like me you do the college courses then actually are we not better placed and more qualified than someone who sees it from the outside?

My friends are brilliant and are always there to support me as much as they can as are my family who are amazing, but I always feel like I am putting on them. My sisters have their own families and lives to live, my husband is amazing and really trying to be supportive but I still feel like crap. He now has to work full time and do the running around and I worry if we are strong enough to overcome yet another obstacle. Can our marriage survive another hit? we spilt up once when it got tough and there was no way out, its statistically more likely that families like ours break up, its even expected…..

Why is it so hard?

xx Leanne xx

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You, me, Scouting and ADD

When you have a child with ADD or ADHD how often do you sit there contemplating if your child can or can’t do something as mundane as be part of a youth organisation? Answer is a lot I bet because thats what it was like for us. Having a child with ADD (ADHD without the hyperactivity) can make you feel that your child can not be exposed to the same degree of adventure as another child due to their symptoms, Forgetfulness, day dreaming, anxiety, impulsiveness, irritability. Then there’s the hearing loss so that activities such as dancing and indoor spaces with a large volume of people meant that L didn’t get the right access to instructions needed to develop her fragile confidence. We have tried many groups, clubs and outside activities but nothing ever fit well, L was sometimes left on the side lines unable to join in, unable to follow instructions or got bored and lost interest. After a while I made up excuses as to why she couldn’t attend and by using her forgetfulness symptom I was mostly able to divert her.

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Then how bad does that as a mother make me? how can I sprout that I do the best for my girls when I started to use their very symptoms against them in the fight against disappointments and heartache at not being able to participate, simply put I felt that I was protecting each of my girls. Noisy environments are not great for their listening and concentration skills, and its increasingly hard to find anywhere that can openly cater for my Childs needs and not be scared of by labels that society attaches to them.

My view on this changed though in 2015. Our eldest who has a mild hearing loss wanted to try scouting. I was a little worried about the hearing aids and if M would be able to follow the instructions but I needn’t have worried at all. M came home and loved it with the adventure and being able to have fun with friends she didn’t look back and now 3 years later has become a young leader with the Beaver scout’s.

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L Ready for a Parade

Now I may just be barking up the wrong tree but its possible that the great outcome of M’s participation was due to my husband becoming the scout leader but I don’t feel this is the case. Especially having my youngest (Hearing aid user) who has just moved from Beaver scouts to Cub scouts with no parent as a leader and having gained her Bronze award having fun, learning new skills. After doing some research into scouting at the time, there are not many organisations around that are as Diverse, inclusive and about its youth members. What started as an experimental camp with a group of boys led to the start of the scout movement we know today. Best of all its not just for boy’s!!! All four of my girls are now in scouting and so are me and Dad.Its extremely important that all leaders are aware if there are any special needs so that they are able to work to your child’s strengths. Scouting allows for this to be done naturally with a Wide range of badges and ways to earn them taking into account the individuals own needs. Needs can be catered for with the help of all Leaders in the group.  The Troop night lasts for 2 hours and L is treated as one of the troop and kept interested and stimulated with fun tasks and activities and the programme of activities is just adapted slightly for her if needed. There is a dedicated Unit in Norwich offering scouting to all those with disabilities should we ever need to consider another way of L accessing scouting but at present she hasn’t had any problems accessing group and District events due to her ADD or Hearing Loss.

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She loves it, the outdoors adventures, the campfires, the bush crafts, earning badges, being taught the theory as well as the safety behind skills, she takes a full part in all aspects of scouting. Yes I worry as she is Medicated, what happens when the medication wears off ect but she has managed incredibly well. Scouting also gives her confidence and is excellent at giving her the space and opportunity to use her knowledge and skills and to even make friends.

Finding an organisation that can offer my girls so much in terms of memories, adventures and activities and not make them feel that they are not able is great. Yes we have to risk assess, take in to account the disabilities but labels should not mean that they miss out on great adventures no matter their disability. Small changes can make a huge difference to a child with special needs or disabilities and having a youth organisation that can and will adapt is amazing.

xx Leanne xx