Mum vs disabilities; life in our house

Drawing on the comments and feedback I have received from my previous blog ‘A mothers insight to living with ADD’ I wonder if any of us when raising a child with disabilities ever realise the moment we go from being a parent to a carer?

As a parent of a disabled child we in effect play two roles. Firstly that of mother, father, parent. This entails a lifetime (talking to older parents whose opinion is we kids never grow up 😊)  of looking after their children’s needs, nurturing and teaching them. Secondly we are that disabled child’s main carer. We administer medication, we look after their care needs, we adapt ourselves, our family and our lives to being able to look after our children the best we can. All of this without having any of the additional training that would be required if we were to actually be a carer and work within the general population!!! We are there 24 hours a day 7 days a week and even when your children go to school the ongoing applications and appointments never end. Its a long and tiresome cycle of trying to get the best for your child. It’s more than a full time job, it’s more than a career. 

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Being a mother is hard

I am finding that especially hard at the minute raising four girls. What I never expected is that I would also take on the role of carer in the sense that I help them in regards to their disabilities. The main one in our house being the ADD and sensorneural hearing loss. Having listened to other parents in regards to additional needs and professionals views it’s a simple deduction that there needs to be a shape up in how mental health and learning difficulties are diagnosed here in the uk for our children. It takes to long to be able to get the help and diagnosises that we need to get the best help and care in place for our children. We need better support for parents as leaflets and being given a box of medication is not enough. 

 I know that in this respect we were luckier than most as because hearing loss in one of our daughters was detected at birth we were already regularly seeing a paediatrician who through regular 6 month check ups was able to see that there was something else also going on. Saying that for 7 years the slow progress and behaviour that our daughter exhibited was put down to the hearing loss. Which we never argued. The day we were told it was ADD, short term working memory loss and learning difficulties was the day I truly started to believe I couldn’t do this parenting lark. That I would never be able to give my daughter the best and get her the help and support she needs both at home and school. 

As a parent how are we qualified to diagnose what else is going on with our own children. All that we can go on is our own maternal and paternal instinct. Bringing up four children I find that my senses in this regard are well worth following so never let anyone even professionals make you doubt yourself. In most cases that’s extremely hard and for me I got so fed up of thinking people thought I was making up the behavioural problems that I started to film it. I didn’t then plaster on social media but I used it to show the paediatrician and other healthcare professionals what was going on. I also used it for school. Girls with ADD/ ADHD tend to hide their symptoms at school hence why they are more difficult to diagnose. It also allowed me a glimpse of how I myself cope or don’t cope in that particular situation. Even now maybe 60% of the time I find I am getting angry with my children, but it’s more down to frustration. With ADD I try and take everyday as it comes because you never know if today will be a good day and with a good hour before the medication starts to work so much can happen in that small time frame that can make you feel like a failure. No matter how great your routine is and how strict you are in keeping to it invariably you or your children have off days. I know we do and it’s these days where the doubts creep in about how I am coping, managing and wether I am doing my best. These are our crap days, the days I don’t want to get out of bed and face the same routine. The day I don’t want to face the same arguments and having a 9 year old who hits out and screams.

 These are the days I have that terrible thought about “why did I have children” am I the only one?  Is this just guilt and tiredness talking? Or am I really such a crap parent? Working in the care industry you do your job then you go home to your family and hopefully forget about work. For us parents if disabled children there is no escape. We live, breathe and work disabilities no matter how small. We are not crap!!!! We are parents getting on with the job of raising our children the best way that we can with as much support as we can get.

Living with Hearing loss
My eldest child born in 2003 was very slow to speak. The health visitor referred her for a community hearing test at 9 months. He came out rattled a few toys and told me that I was an overprotective first time mother. I will never forget that day. How stupid I felt and how I felt inadequate as a mother. Aged 2/3 she was still babbling and speaking very few words. She was given speech and language therapy but having no diagnosis of anything else going on this soon came to an end.

You see she was born before the new born screening tests were brought in for all newborn babies. Having had no experience of hearing loss and no family history I had no idea that that is what was holding her back. Hearing loss that I had so far encountered was the elderly while working as a Care Assistant. i didn’t know anyone with hearing loss other than that. Even working as a carer I didn’t have hands on experience with hearing aids. If one fell out I could put it back in that was about it.

It wasn’t until our third daughter born in 2006 had the newborn screening which picked up a hearing loss that our journey changed direction and we were faced with this disability.  It was still 2 years before our daughter got her hearing aids at which point she had missed out on two years worth of communication and sounds. Her hearing loss mild/moderate bilateral sensorineural hearing loss was finally diagnosed 1 month after her 2nd birthday and she was fitted with hearing aids within weeks. On top of that as a precaution finally both Dad and myself and our eldest two children were tested. It was at this point aged 5 our eldest was found to also have a mild hearing loss and was fitted with hearing aids.

Even with a mild high frequency loss she had managed for 5 years with no additional help. She taught herself to lip read, we use to complain that she was always in our faces when we spoke and the tv was always turned up loud. Now we knew why. Her speech soon went through a transforma

The NHS in this instance were brilliant within months she had hearing aids and was speaking much better but as a parent I felt guilty. She had technically lost out on 5 years of hearing sounds normally and it still has a lasting effect to this day. It was that day 7 years ago when they got their hearing aids that I went from parent to parent/carer but until fairly recently I never cast myself in the latter category. Now that I think back audiologists, teachers of the deaf all have training to work with hearing aids. I didn’t have and still don’t have any formal qualifications in this area. I can strip a hearing aid, re-tube an ear mould, clean and maintain the hearing aids as a whole, but a lot of this was trail and error. I had to teach myself mostly with help from a fabulous audiology team who were and are still there when I need help. We were also put in touch with our local sensory support network who are on hand to offer help and advice and check that the girls have everything they need at school from teacher training to sound field systems.

Even now I have moments where I say out loud to myself you stupid person because I will be trying to shout to my daughter  who is upstairs without her hearing aids or on the playground where it’s noisy and she can’t hear me and it’s not until I start to get annoyed that I don’t get an answer that I realise duh they can’t hear me, they have a hearing loss 😂😂 I have to laugh at myself as even now 9 years later I forget. The girls do not let their hearing stop them from doing anything. My eldest is in the Scouts and they all go dancing. 

 

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youngest with hearing aids aged 3 months

So being a mum

For me personally having felt that guilt over not getting in my eyes the best care for my children before diagnosis I now feel that I have to do everything that I can. I can’t let them down again. Until they are older I have to do everything I can to support them to become the people of the future. They are our future even with their disabilities. Sounding a little philosophical there and I know not everyone will feel the same.

For me until asked recently I had never cast myself as a carer. We choose to have children and ended up having four beautiful individual girls. We went into parenthood expecting a bundle at the end of nine months and to then raise them. I wanted to be a mum. I wanted to bring into the world my family. I still feel that way. They are my children, mine to protect and love.

What I or any other parent does not expect is to be raising a disabled child. Wether its hearing loss, ADD, ADHD, allergies, Downs syndrome and many many more the simple fact is that raising a child with additional needs is exhausting and hard. Its full of guilt, pain, heartache but also love, joy and a sense of achievement when they accomplish even the smallest of tasks. We do  not have training or degrees. There are no specific courses and exams that could prepare us for every eventuality. In most cases there is no way of knowing wether you will have disabled or healthy “normal” children. Out of my four girls I have 3 with hearing loss one of these has additional needs and ADD. My forth daughter has nothing wrong with her. I have nieces and nephews from my siblings and they have no disabilities either.

For me as a parent my goal is to offer my children love and support. This can be emotional, physical and financial. I celebrate their achievements how ever small as for them it’s sometimes the smallest things that mean the most, and I am there when they fail. I see my job as one to encourage them and help them to achieve their best in life and to never let anything as much as is humanly possible to stand in their way. This includes constantly learning myself. I soak up as much as can about anything and everything. I want to show my girls that never mind your age or disability if you want to achieve then try your hardest. 

As me I try not to let the guilt get such a hold these days. If i need to know something I try and learn it, if I have questions I ring the professionals, I try to get as much information as I can to help me and my family. I have also started joining online forums and Facebook groups as well as going to meetings. As humans we like to know there is someone else there and being able to contact other parents who are going through the same things can help keep you sane. It’s hard don’t judge yourself to harshly
X Leanne xx

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