‘on this day’….. feelings of guilt as a mother

Today while on Facebook I had that ‘on this day’ pop up on my home page. You know the one? I personally absolutely love this feature as I get to see pictures of my girls that I had either forgotten I had posted or forgotten that I even had. In fact a few years back I lost some pictures but thanks to Facebook I regained most of them. Heres a favourite from 2010

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aged 3 1/2 years 

Anyway as you do I decided to click on it and see what popped up. Well hand on heart I did not expect to see that status. From 19 march 2013 @ 08.06am

Hospitals answer was medication so today is the first morning of Louisa being on ADHD medication mixed feelings about this 😦 and a sense of feeling lost

So you see today it has been three years yesterday we were told our daughter had ADD and three years today that our daughter had her first lot of ADHD medication!!! Her paperwork states ADD and learning difficulties and three years later she just seems to have a long list of letters after her name like OCD,ASD apparently she is across the board.

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Shock…

I looked at that status and just thought OMG I have been medicating my daughter and re-ordering tablets for three whole years. Never mind the whole living with a diagnosis of ADD for three years but what struck me then and made me write that status has really struck me again. Its made me feel things that I thought were under control.

My daughter is on what could be a lifetime of medication. She is basically on a mood altering drug that can almost make her seem like Jekyll and Hyde. Before the tablet I sometimes feel hard pressed to cope with her. She won’t co-operate, she shouts, screams, forgets where she has put something and her OCD well don’t even get me started on that kettle of fish 😦 she also picks on her sisters spends five minutes walking up and down the stairs saying ‘shit bag’, she resorts to babble and baby language and will not get ready for school. As soon as that medication kicks in her OCD ramps up and she gets dressed makes her bed and tries to eat her breakfast. Why is my daughter on medication?

I think even as I have been writing my blogs its moments like these that really hit home that my child is different. I am not sure what other parents feel at times – I would be really interested to know!!!

For me looking after my child as I have said before is just being a parent. I do everything automatically. I try to always do my best by my children. Some days this works other days I feel like a complete failure. Today has been  one of those days. Its been a day of

  1. Am I failing her?  because every morning she has a little pink and white tablet which she takes without hesitation.
  2. Am I raising her the way i should be? or is her disability actually my fault? am I doing or have i done something to make her this way?
  3. Is the trust that she places in me as her mum just an illusion? or is it my way of justifying that i am medication her
  4. Am I doing the right thing for her or is drugging her a way to make the rest of us in the house feel like we are having an easier day.
  5. whats going to happen in the next three years?

Can I really cope? …

you know what yes I can cope!!!

Yes I need help and support, yes I trawl through group forums and ask advice, yes I share my experiences because that is the way that I have found helps me best. I cope knowing that I am not alone. Neither are you!!

There is no shame in asking for help and there is no shame in my daughter being on medication. Having four children fairly close in age means that the symptoms of  ADD is really visible. Surely if it was bad parenting all my children would be the same?

Medication is such a big word and for children its scary. For louisa she calls it her ‘HD tablet’ because even aged 9 she knows that it helps her. It makes her brain stop flitting through tv channels so that she can concentrate better and for longer. It allows her to learn something new everyday although it does not help with the memory problems 😦 . She is better able to control her temper and her outbursts. She is still the same person with or without the tablet, just with the tablet she flutters about less (her words lol like a butterfly). Its really more like stomp around like a teeny pre teen buts thats just between you and me.

So to finish..

I think realistically its feelings like this that makes us human. When raising a child with a disability or learning difficulties life is always in the fast lane. Moods change, behaviours go up and down. Our children can be difficult and somedays life can really hit us hard. Going through what i have been through the last three years with a diagnosis and medication, relationship breakdown and heartache I find it easy to sink back into that quiet place inside me where I ignore people and become low. I feel like crying and the guilt really hits me hard. Writing this my hands are cold and my stomach has butterflies. I really hate feeling like this but do you know what?…. feeling low is a normal process that any human can go through and its how you come back up that matters. Take each day as it comes, be the best mum or dad that you can for your child and help them as much as you are able to grow and be happy.

Thank you for taking the time to read enjoy your weekend!!!

x leanne x

Continue reading “‘on this day’….. feelings of guilt as a mother”

I found a superpower….Massage

Ha Ha I love this heading I think its well apt for how I feel massage has helped me with coping with the day to day life, drama and ups and downs of raising a nearly 10 year old with ADD and hearing loss. Hope you enjoy reading as always any comments, feedback very welcome, at the end of the day I am just a mum like you x

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Touch…. What is meant by touch? 

The media portray touch as sensational headlines made to sell newspapers and get you watching the news. It’s deemed inappropriate, something we should never do, something we should get in trouble for. It’s almost a taboo subject. My six year old daughter came home yesterday and told me that the teachers are no longer allowed to apply suncream? my first thought was thats just stupid…. but this is how our society is going.

The thing is human beings need touch. We are a very touch sensitive race. We find comfort and warmth, love and support in touch. We communicate with touch, we express our feelings through touch. We bond through touch… How could this be wrong?  The sad answer is in lots of ways. There are so many bad things in the world that for many of us we are unsure what is right or wrong which is making it all the more harder for us parents. Any child needs to feel love and a connection with another human how can that ever be deemed wrong? My children who have hearing loss have already lost the full use of that sense making touch, sight and smell all the more important for them. What happens if touch becomes taboo…. we will no longer be able to hug our own children, tend to their cuts or help them through the power of touch. How will massage therapists like myself use massage to aide and help those if touch is no longer allowed? Its all very scary and confusing as a parent but here is my take on how positive touch could help you and your children x

Positive touch….

As an Indian head massage therapist one of the first things I learnt was the history of Indian head massage. Families, barbers ect in India use massage in everyday daily lives. The whole family gets involved from grandparents and the elderly to new babies, toddlers and everyone in between. As well as the massage benefits touch is an important part of family bonding, promoting respect and spending time together.

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For us as a family this is where massage now plays a huge part. There is now a lot of research out there on the internet about the benefits of massage for ADHD / ADD and similar conditions. It was due to this research that I decided to train in Indian head massage and story massage. I could go into great detail and post excerpts from these studies but instead as a mother not a research specialist and having hands on experience of everyday living with a child I decided some weeks ago to write what I know.

My main use of massage is at bedtime. My daughter has a drug called liquid melatonin which for her at the minute is the only medication that allows her to have a modicum of sleep. Trust me we have tried and sort medication as a last resort. Before she was medicated we were up until the early hours with a very awake child. Taking it in turns almost in shift patterns, trying to keep the noise down and just simply trying to be a family. Eventually though our other children were starting to suffer the effects of sleeplessness due to their sister. Tempers were becoming frayed, the house was a tense environment and became a home that no one wanted to come back too. Nothing could and still doesn’t sometimes now get her to sleep.

I use to become frustrated and angry because I didn’t understand why she wouldn’t just go to sleep like her sisters. Part of me in a way still feels that I really don’t understand what is going on. We are in the middle of trying to get more information from the specialists but as with anything it’s a long drawn out process. So for now we have to do our best. we medicate her. I as a mother give my child medicine that makes her sleepy even if she doesn’t want to be sleepy. When I say its bedtime it really is bedtime for her. There is no happy medium, its not a joke and its not the easiest thing to do. Watching your child succumb to the effects of drugs is never an easy thing to watch. It does not make me feel good inside to measure out the medication….I am not secretly inside doing a victory dance because tonight I know she will get at least 6 hours sleep. The reality is so much harder to bare.

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feeling like I am floating about not really knowing what I am doing 

So bedtime is the main area where we struggle. We have a checklist that we have to methodically stick to :

  • There’s no electrical devices of any sort an hour before bed. This is to try and help the melatonin produced in the brain do its job.
  • 15, 10,5 minute warnings – this count down ensures the least amount of possible arguing. Our daughter can not be rushed so this helps her to keep track of the time.
  • medication and snack
  • Upstairs, wash, dress, teeth
  • Into bed – check all teddies, blankets are there
  • read a story
  • 5 – 10 minute massage – in bed where she then does not have to be disturbed.

 

Maybe 7 – 8 times out of 10 massage is the key to getting our daughter to relax just enough to help the medication do its job. But massage is not a cure. It’s not a fail safe! It’s not a miracle cure. So why do we do it? Because even when you can’t see results massage has helped in some way, it allows our daughter to interact and to feel safe and happy. Its almost like when you swaddle a baby and they feel calmer and content. Its the same with our daughter and massage. We now use massage in so many aspects of her life its almost become a comfort blanket. If she is feeling anxious 5 minutes of massage can make her feel a little better and thats the best that I as a mother can hope for. Its what we do….We find ways of helping our children and making them happy. I feel great achievement if our daughter can manage to sit still for 10 minutes and relax with a massage. I also feel that as her care giver it has strengthened our bond. My voice through story massage can quite often bring her back to herself. A simple story can help her calm herself but also help her with language and counting and just making sense of the world around her.

Back to massage…..

Generally we do 15 minutes of massage every night. I use story massage which is a great way to interact with your child while keeping them engaged. Blending stories, songs or nursery rhymes with simple,gentle, relaxing massage moves promotes relaxation. The massage eases tense muscles and calms the mind while at the same time strengthening the bond between myself and my daughter. Story massage is a great way to end the day. It’s soothing and can be done while my daughter is laid in bed. Twinkle twinkle little star up her arm is her favourite at the minute.

This massage is especially important after a particularly stressful episode. Massage and my voice is sometimes the only way I can get through to my daughter. It can calm her, get her to refocus on the here and now and also get her attention away from whatever caused the problem in the first place.

The way I see it is when I was pregnant I spoke to my bump. I imagine lots of other mothers did this too. Once my daughter was born having failed the new born hearing screening after two years she was diagnosed with hearing loss. Although it took two years for her to get her hearing aids the close contact and endless talking to her ensured we had a strong bond. So she knew my voice. Once the symptoms of ADD started to present themselves aged 2.5 years I figured that on some level she knows my voice and that I am a safe zone. A part of her brain can recognise that I am not a threat and even though her body language is saying one thing generally I am able to calm her down by talking and singing. This can be really hard when she is shouting and swearing at me but I have to persevere. If I can’t look after my own child who else is going to?

Part of this also means that she feels she can take all her anger and frustration out on me as well but that’s for another time.

So when using story massage in a stressful situation it can help to calm and refocus my daughter as she can hear and recognise my voice. Also by telling a story or singing a song there is no room for me to shout or get angry. Have you tried to tell a story while your angry? I have….. By the end I was laughing and so was my husband because it just sounded funny.

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http://www.storymassage.co.uk

Story massage is simple. There is no right or wrong way. It’s all about sharing positive touch with your children. Promoting respect at the same time as being creative and fun. For those with Autism, Anxieties learning disabilities or who just don’t like to be touched all can join in and enjoy the benefits of story massage. You see story massage could be used to promote touch resulting in self confidence. It gives children the chance to be a part of the massage. They can write their own stories, they can join in with siblings or they can share a massage with mum or dad. My own children have endless fun writing their own stories and one of my daughters loves to give massages. She picked up the massage moves easily, as did my 6 year old. Visit http://www.storymassage.co.uk

Indian head massage is reserved for once a week. Concentrating on the upper back, shoulders, neck scalp and face Indian head massage is gentle and a seated massage. The treatment usually lasts 30 minutes. My children all love having a massage. The benefits are lovely.

If you want to find out more then please get in touch. I currently offer sessions in Norfolk to parents, care givers or anyone who wants to learn. To find out more http://www.marshamholistictherapy.co.uk

Take care until next time

 

x leanne x

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