It’s really been a year??…..life as a mum to extraordinary children

I can not believe it been over a year since I put pen to paper…..well actually yes I can as I have no idea where the time has gone. It seems to be a blink and miss it scenario at the minute.

So much has happened, L sat GCSE’s and then left school but is bravely fighting mental health, E finally got her diagnosis of ADHD combined and started to accept herself and understand herself, C started college and is trying to manage her seizure’s and M is nearly 19 and makes me so proud each and every day with how hard she works even though she still needs a lot of help and support from me and dad.

Who ever said it gets easier the older they get though I have come to realise is a big fat lier, that phrase is a myth we tell ourselves to get us through the terrible twos, threes and beyond. I like a muppet really did believe that it would get easier and now here I am with a 18,17,16 and 12 year old and in the heat of the moment, in the eye of the storm fervently wishing they were still babies I could tuck up in bed with their bottle and favourite toy just so I can take a breather.

Breathe…..sometimes that’s all I want to do, I want to be left alone for 5 minutes, I don’t want to be touched or talked too, I don’t want to smile, or listen to anything. I don’t want to fill in forms, speak to professionals, I don’t want to go out and do anything, I don’t want to socialise I just want to be myself just for 5 minutes.

Playing a game together

Unfortunately my reality is that I am on call 24 hours a day, 365 days a year with no holidays. I’m a co – parent, wife, sister, daughter, friend, carer, business owner, mental health worker, Triage for medical issues, taxi, bank, emotional support, 1:1, advocate, translator, punchbag, you name it it’s in the job description for a parent raising disabled and special needs children.

When your children become an age where you hope they can be self sufficient those with special needs and disabilities still need you. They have needs but it’s hard to remember that so do you!!!

It’s exhausting and frankly bloody annoying sometimes and when I’m feeling really off there are times I could walk away from it all. That’s when I know I need a little TLC for myself, a walk, a film, a laugh, losing myself in Facebook videos, however you do it make sure that you fit in time for yourself.

Sometimes well meaning people will tell you you need to speak to someone, you need to talk through things with someone, your raising teenagers – them being teenagers is the least of my worries and problems if only it was that simple. I suppose what I am saying is do not forget that you are only human, there is only one of you, take care of yourself and ask for help if you need it. Hold your head up high and never be ashamed you are amazing!!!

Xx Leanne xx

Hooray for Good day

Being a mum is not always all doom and gloom as we all know. Some days make us feel all giddy inside and others make us feel like tearing out our hair but let’s talk about the good times.

With summer just around the corner and with the promise of sun and warmth this week the start to the Easter holidays has been an ok experience. If like me your stuck in daily routines, tantrums, school clothes, homework and housework the start of the holidays can be daunting. No school run yippee but hungry, agitated little humans being home all day, all week really can leave a ‘take me now’ feeling. I turn to Gin…..no I don’t really, although it’s very tempting!!!

Mummy time

My girls have diagnosed and undiagnosed ADHD and Autism, there’s no two ways about it. Some symptoms of ADHD that we see in our daughter are:

• They are unable to sit still
• Problems with concentration
• Unable to wait their time
• Act without thinking
• can be forgetful or have problems with memory
• Little or no sense of danger – will run into traffic even at age 11 years

Some Autistic signs the girls have

• Abnormal facial expressions – eye rolling, facial tics
• Avoidance of eye contact
• Inappropriate social interaction – problems with social communication
• Social withdrawal – difficulties interacting with peers
• Learning disability or difficulty
• Lack of understanding social cues and situations such as sarcasm

They are both sticklers for routine and can make merry hell if it’s disrupted, this includes having school holidays. They struggle to make and keep friends, so and so said this, no one likes me, no one wants to play, okay darling then find something else to to do!! And they stare blankly back at you….with lockdown we haven’t been able to arrange and rain check any catch ups and meet ups – brilliant nothing like going through the Maelstrom of emotions when plans change or evolve.

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But….the start to this holiday has been great, sunshine equals garden time, if I’m outside so are they, I school runs or meetings so I’ve had time to cook from scratch… I’m on slimming world and by default so are the rest of the family and with home cooking I’ve started to notice that one of our girls isn’t as hyper in the evenings….at least until bedtime. Every thing I make they eat, a few moans here and there but I’m sticking it out.

The sun has been out and it’s been warm so no I mean really is there nothing else to my life than this and I mean this is every day, can anyone relate? This is a conversation we have every day with our fail….

‘ mum shall I wear my shorts or my trousers?’ – I don’t know you choose- ‘but Mum is it hot or cold?’- it’s cold put your trousers on – ‘but what if I get hot mum?’- then put your shorts on ( at this point I am gritting teeth) – ‘but then I might get cold!!!’ – oh for gods sake put your shorts and trousers on then if your hot take the trousers off if your hot put them on- but mummmmmmm‘

Anyway sun is out, it’s warm, no school run, cooking and baking, no appointments, no unscheduled meet ups it’s brilliant there is no expectation, no fear of fallout or meltdowns. Obviously there is the odd blip here and there, they wouldn’t be who they are without them but when you as a parent don’t put to much pressure on yourself I think there’s an opportunity to relax and recharge. As parents and as carers we take to much onto ourselves, if lockdown has taught me anything it’s that I’m mad….Not really it’s taught us as a family that slowing things down, taking time out and on occasion having no expectations leads to all manner of new experiences. Seeing the smile on their faces even amidst the Frustration, pain and giving them a day of where something is expected of them makes it all worth while…well nearly

Xx Leanne xx

What Day is it? You did What???

It’s Thursday, it’s day no idea of national lockdown 3.0 here in England, how’s everyone coping? For me I am sitting here having made the decision last week to send two of my children back into school as vulnerable pupils. Those of you who are critical/key workers and parents of vulnerable children what did you decide? How did you decide?

A weekend walk l.brown

For me, it really was a no brainer, with two children who suffer with Anxiety, low mood and who have ADHD, Autism, school really is the best place for them to be. Regardless of your feelings about what is right or wrong we have weighed the benefits of being in school and for us personally they outweigh the risks. This said it’s such a controversial issue of why your sending your child into school during a Pandemic lockdown. Most family members, friends are supportive especially once you have spoken to them, but for some the decision to send your child into school after the prime minister has locked down the country seems ludicrous….well here are my reasons, see if they make sense.

• Children with learning difficulties can already be at a disadvantage education wise, some need more time to think, write and absorb information. For some the education system is difficult and they struggle academically to achieve no matter how much they try. For my two less pupils in class = less pressure to preform, less distractions
• Home schooling is not for the faint hearted and it is not easy to transition from parent to teacher. I hold up my hands I have no patience, no empathy as an educational teacher. I can teach the girls to bake, clean and other life skills, but maths…. not a chance and I’m not thick!!
• Trying to keep a routine for those that really need it to quantify their day is really difficult without the structure of school. Our girls need consistency and routine in order to feel safe, included and at peace with themselves
• with routine and consistency comes peace of mind for my girls it’s one less “thing” to affect their mood and increase their anxiety in an already scary and confusing situation
• A break from being in the house, yes we go for walks and out in the garden but for my two school is for school work home is a safe place to be who they are
• A slightly less important reason but still one we considered is that We are a family of 6 with three of our children with disabilities and the 4th recently diagnosed with Non Epileptic attack disorder space and technology is at a premium, also having experienced the previous big lockdown protecting relationships is also important with us all being at home.

So perhaps reading my views what strikes you is how much “routine” is mentioned. This is the single most drive in our household. The absence or the disruption of routine can mean meltdowns, anxiety, feelings of being scared, worried and confused. Just simple disruptions such as a change in school run due to a diversion is enough to upset my girls, sounds ludicrous I know and it drives me mad but it’s just one of the things I have to accept as a mum to children with ADHD and autism.

I’m trying to say make the right choice for you and your child! Don’t feel like your a bad parent or person because you are doing something which is going against the grain! As always we put our children’s mental and physical well-being at the forefront, yes there is risk of them coming into contact with Covid but there’s also as much risk as when I go to get food shopping. If I stop food shopping we don’t eat, if the girls don’t go to school they become even more vulnerable. There is already so much confusion, worry in the world right now, I can’t stand the thoughts of my girls self harming again due to being in lockdown and suffering, not if there’s something that I can do about it x

As always leave any comments get in touch

XX Leanne XX

When life gives you Lemons…… Mum Coping with a change

Its been a while since I have felt able to put pen on to paper. The last year has been one of the most difficult I have had to face in a long time. The loss of freedom, of structure and my own self worth. Having been diagnosed with Non Epileptic Attack disorder I have had to take a step back which has left me some days with a feeling of failure and morose. I feel guilt even more keenly as now not only do I have disabled children to care for I have had to step back and take time for myself.

Me

I have always been someone that takes what life throws at them and somehow tries to make the best out of it. Raising children with disabilities and special needs, a marriage break down and reconciliation, retraining in a new career to fit around my children, meeting new people, asking for help are all ways that I have tried to make the most of who I am and what I have to offer and turn it into something good.

The last year has had a major effect on that ethic. I use to think I was invincible, there was a never ending to do list in my brain. I had places to be, appointments to do, I was running the kids around, working and being a mum. Now I have to rely on other people, my children have had to learn to do some things for themselves and I feel that I am only living half a life. That sounds sad and pathetic but when you are raising children with disabilities your life isn’t your own, I felt I had purpose, I was the primary care giver and with the flip of a switch this has all changed. That said I think my girls are amazing, its been a long road of getting use to sudden changes in routine which has lead to behavioural issues, thrown into having to become more independent before they were ready but they have struggled, overcome and never ever cease to amaze me.

The Girls

Is this a bad thing?

To be honest the monotony of routines, going it alone to appointments, the never ending routines that my children had to work through each day was getting me down, I just did not want to admit it. I didn’t like to ask for help, I didn’t want to seem weak….. but in the end I had that choice taken away from me. My brain decided enough was enough and that it would start re booting when ever my emotional state got to high. The theory is that some past event has an emotional tag attached to it so when I started to get stressed out the emotion would take over and re start my brain. The daft thins was I could be hoovering, in the middle of an challenging episode with one of the girls or about to fall asleep, there is no rhyme or reason for it.

Why am I writing now?

Do not go it alone!! My best advice for any parents out there raising children with special needs and or Disabilities is do not go it alone. You never know when you are suddenly going to need someone else’s help. Yes its hard to get professional help, yes families are unique and sometimes difficult and you may not feel you need a support system, but you do. Wether its support groups on Facebook, websites, specialists, group meetings, what ever it is if its there use it. Our girls have hearing loss, ADD, anxiety, OCD and possible ASD, and there are some amazing charities out there mostly set up by parents who have been where we are and are willing to share. I have met some lovely people through groups such as the NDCS and ADHD groups and I don’t think I would have managed this last year if I didn’t have a support network in place.

As always am here to chat / share if you would like to get in touch. Next time….. ADD and not afraid of it

XX Leanne XX

Introducing Max – Special Needs meets Special Bear

A special Item

Many of us know the power we place in objects that are special to us. from special toys as children, to a favourite pillow as an adult. At some point in our lives we all have a special connection to something inanimate, something which can make us feel safe. This is especially true for children who from a very early age can become dependant on those favourite teddy, dolls, toys.

Our children have all at some stage had a favourite teddy from Bessie who has done a few hospital stay in’s to a heatable polar bear who has travelled the length of England and I am pleased to say even my eldest two who are now high school age still need the love and security they get from that special teddy although hidden out of site.

Special Needs, Special Items

Having a child with special needs can make the task of having a favourite specific teddy more difficult. The need to ensure he never goes missing is always paramount and so the best advice if you are able too is to buy more than one of the same ted!! But this blog isn’t all about those first teddies who we keep and love forever. This is a blog about something new. This is about two of our daughters, one who struggle’s with anxiety daily, has hearing loss and ADD (Attention deficit disorder), has struggles and fears about high school and another one of our daughter’s who struggles daily with hearing loss, possible neurodevelopment issues, anxieties about being away from mum, adapting to her surroundings and their new friend Max MindPower from www.max-mindpower.com

Who is Max?

While waking up one morning a few months ago something caught my attention on the news. The BBC were filming a segment at a toy fair and there was a lady talking about Max Mindpower. It was a very brief report but something struck a cord with me. After quickly jumping on the internet what finally captured my full attention was not only the appeal of a cute bear but more than that was the story of how this bear came into being.

You see Max is a Mindfulness bear invented by Nikki with the help of others. The back story of how he came into being is amazing. The story that Nikki briefly touches on, on her website is one of determination, hope and amazing resilience, All things that I hope my children will have as they walk through life. So Nikki having gone through such an ordeal personally still had the care, compassion and fire to put her own experiences into a beautiful product designed to give back to those who use him using a simple meditation technique and stories. Whats more Max can be used by adults and children alike, with or without disabilities.

Max comes in two sizes

Max mindpower junior

Max mind power senior (who we have)

Both Bears have three guided meditations which are Body scan, Mindfulness of Breathing and Kindly Awareness plus a Neuro-linguistics exercise which is designed to help capture good feelings. Max works through these meditations with you and even breathes with you. His amazing tummy goes up and down which is amazing for those that need a more interactive, visual element to keep them focussed and engaged.

Each bear also come with their cute little jumpers and a backpack in which to keep the accompanying books. For the cost of these bears £29.99 and £39.99 respectively they really are great value for what you get and the after care is brilliant.

Max at Home

We have had Max Brown as we call him for a few months now and he is a wonderful addition to our family. Initially he was used a comfort aide, taken to high school, and brought out when my daughters anxiety felt a little overwhelming. Then we started to work through the story which comes with max, “The story of Max MindPower” which is about how he came to be. This is a special part of who he is and the books are written so that children are fully able to engage with Max and for my own daughters they feel a connection with him.

Next came actually using Max to stop, sit down, think about and release those bad feelings that my Daughter was having connected with her anxiety. We use Story Massage  www.storymassage.co.uk as a family to write about our feelings and use massage as part of our routine as a relaxation method but by combining this with Max who talks you through a short meditation routine, we have been amazed by how much he has helped L with her feelings of worry and how when she needs 5 minutes of calm and that extra incentive to relax max is there ready and waiting to do what he was born to do.

He really works, so much so that as a mum I have used him as well. You may think I am crazy, a 34 year old women using a talking teddy bear to help me refocus and relax, but when the kids have gone to school and I am feeling stressed from the school routine and I need to relax before I start work as a Massage Therapist, just 5 minutes with Max and I really feel like I am ready to face the day.

He really is a part of the family and Nikki his inventor is such an wonderful role model for anyone who needs that little bit of help and support and to know that even when bad things happen, with love support and the right tools our children and ourselves can be really amazing.

Check out Nikki’s website www.max-mindpower.com for more information and to start your own magical journey.

XX Leanne XX

Sometimes I cry…Raising Disabled Children

I haven’t written in a while, life has just seemed to overtake me one week blending into the next. I keep going from one day to the next in the same routine as though I was stuck in a ground hog day. Do you ever get fed up of doing the same thing day in day out? Be Honest…..I do it drives me wild to know that when I open my eyes the day will start the same as every other and that by trying to change anything I just make life more stressful for myself. It can at times seem like we are living with a Dictator. Having 4 girls anyway the hormone levels in this house can be through the roof, factor in one who has ADHD, memory problems and other issues and I am surprised the husband hasn’t moved into the shed.

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Now I know what some of you may be thinking, Am I just whinging? Am I being silly? Am I weak? A bad mother? The answer is no…..Anyone raising a child with any form of disability knows that you have to adapt, you have to work around their quirk’s, their behaviour and in most cases you really do have to just make the best of any situation you can. Its really hard to do this and still feel that you are being a good parent. I worry every day the effect that one Childs disabilities is having on her siblings. I also worry that my other daughters perceive their sister as the favourite, the one who gets all the attention wether its good or bad. I worry about the relationship’s my children forge, the way they are at school, I get angry at the stupid things they argue about and at the end of the day I cry. I cry for the things one daughter has lost, I cry about the disabilities, I cry from the stress, I cry and there is no shame in that at all.

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Having 4 children is hard, I am judged for having four children and at times I feel its my fault they are who they are, but is it?  I also feel really anxious when my youngest acts out. I feel certain that its learnt behaviour being 4 years younger than her sister she has grown up watching that one can be naughty and still get attention, but it scares me what if she also has ADHD?

So how do you split yourself and be in effect two different parents at the same time?

Truth is 14 years later I still have not found the answer. I struggle day in and day out with how to best be a parent. The way I parent is constantly evolving and changing to adapt with the needs of my children but it is also constantly being observed by those on the outside. Not all disabilities can be seen as is the case with my daughter’s. They do not sound any different, look any different and at times do not act any differently to other children. It isn’t until you look closer that you start to notice the subtle differences, the hearing aids, the slight lisp to words, the forgetfulness of one, the behaviour at certain times of day when medication has worn of, the Anxiety living life. If you passed my children in the street you wouldn’t notice anything other than 4 sister’s.

This is perhaps the hardest part of being their mum, unless you are living the life that I am you can not fully understand how exhausting it is trying to keep everything together. That smile on my face at 9am is one of relief not happiness. The frown at the end of the day is born of tiredness and also stress. That sigh is after another round of upset screaming, or a round of abused hurled my way that makes me feel like walking out. In fact I have come to realise that in trying to raise them, teach them and make sure they get every opportunity to be independent I sometimes need to take a step back, read some of my blogs and realise once again I am not wonder women, I am not a magician I am a mum and one that will adapt, fight and evolve even while feeling like I can’t do it anymore. Its not what I signed up for but do you know what, these children amaze me everyday, there tears but also laughter, theres anger but also love and even on a bad day I will always love and be in awe of my children.

xx Leanne XX

You, Me and ADHD

 

Putting my hand up in class….no way
Going up on a stage to preform….not me
Talking to people I don’t know…is there anything worse
Feeling out of depth in new situations…yep me

 

This use to be me and I bet its a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I use to be shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes I went to toddler group’s but made sure I went with someone I knew. I hated going to the weigh in clinic and I never asked question’s and I just did what I was told.

To be told that your child has a disability, special need’s and needs regular check up’s, investigations and so forth didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing check up’s and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

For me I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was 2 when she was formally diagnosed with a hearing loss and 7 when she was diagnosed ADHD. A big change in my confidence, and strength levels was needed.

I started by accessing online forum’s, talking to people online started to give me the confidence to get the answer’s I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and also to offer advice to those just starting out on their journey with parenting a child with disabilities.

One big recommendation would be to have a note pad and pen and jot things down that the doctors and specialist’s say in case you want to research them and keep that notepad in your handbag, coat pocket so that if you think of anything you can then remember to ask at the next appointment. Its easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adult’s make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model and for the families who are diagnosed daily and are placed in the same position I was …no way am I letting them down.

If you want to know more, please do follow our blog at http://www.leannesihm.wordpress.com

 

Massage and sleep

Does massage encourage sleep?

We were those parents who struggled nightly with trying to get our daughter to sleep. Facing the tantrums, the tears, the heart wrenching sobbing and the ear splitting screams. We faced the ever depresssing ebb and flow of emotions from anger to frustration to just total exhaustion. 

Bedtime hygiene……

As a parent I submitted to the specialists and did everything that they told me to do….religiously 

• No computers, TV, games console, phone, or any other electronic device
• Black out blinds
• No night lights 
• Same bedtime hour
• Soothing baths, bedtime strories, classical music, snacks, drinks 
• Medication

I went on sleep courses where I felt like a failure as the rules never seemed to apply to my daughter. It became frustrating and to be honest I stopped going as nothing was making any difference. Our daughter was stressed out and so was I. 

Next step…

Late one night while my daughter was still trying to go to sleep I was googling for help and advice. Firstly what strikes me is that a lot of the research and information available is based on studies in America. While speaking to parents over the years sleep problems are a significant issue here in Britain so why are the specialists here not better able to help us. Why are we given medication and told to get on with it? Why are we told to attend courses to teach us what we are already doing? When will doctors accept that for some children sleep is a real medical issue and not parents making up symptoms in the hopes of a quick cure to make our lives better??

While researching one sleep deprived, weary night I came across mentions of massage. This is something that I had never considered before but having come out the other side of relationship problems, feeling insecure but determined with the thought of doing something for myself appealing I booked onto an Indian Head massage course. 

My Nephew enjoying 5 minutes of massage

The course took 3 months to complete and with my daughters permission I used her as a case study. Well wow from the very first massage move my daughter was a little less tense, a little less stressed and that night along with her medication she went to bed and actually slept. Well like you I thought it was a fluke but as the course progressed and my skills became more fluent and skilled we noticed a big diffrence in bedtimes. 

Don’t get me wrong massage is not a cure, sometimes it will work but others it won’t. The biggest thing for me is that it encourages the bond between me and my daughter. It’s time that we can spend together, relaxing. Massage also helps to relax me which in turn has a positive effect on my daughter. You see if I am angry and stressed she bounces off that, once I calm down I have noticed she does too. 

How can I use massage at home….

Massage does not mean that you have to go and train. A massage could be a back rub, twirling hair at bedtime, it’s about positive touch. For those who would like a bit more structure then I recommend story massage. You can learn 10 simple massage moves that you can use with any song, story, rhyme and can be used anytime anywhere not just at bedtime. We use storey massage all the time from camping to the doctors. Massage can help reduce tension and stress, can help to calm and refocus and with the story massage you can have fun with your children creating massage stories and….

Best of all mums and dads your children can share a massage with you!!!

If you would like to find out more or just wants chat please do contact me

Xx Leanne xx

My Struggle with Prejudice and Stigma

If you have read any of my previous blogs I like any other parent raising children can go through a series of emotions daily. Some are bad days where I struggle with parenthood to the point I feel my emotions are boiling over, my neck and shoulders hurt, I over eat due to stress and I generally feel crap, but other days make me realise how amazing motherhood is. 
I have four girls aged between 13 and 7 and being able to watch them forge their own paths in life is an amazing privilege. We bring these tiny people into the world and are their family, teachers and support network. When they become older these little bundles trust and rely on you for everything still and you know that you will move heaven and earth to protect them. That feeling never goes away…..even now my own children are growing I still feel that sense of protectiveness and love I felt the day they were born. Even more so sometimes, I want to protect them from society and peoples cruel words, from prejudice and judgement.

   While I never thought I would raise disabled children as many parents don’t I have never hesitated in doing all that I can to make sure they get the best and I fight daily to ensure they are raised in a world that does not see them as different and unable but sees them for the amazing people they are and days like today when they learn something new makes me proud. 

All disabilities are different and need care in different ways but we parents become their carer’s and their advocates. In a world that is slowly changing to accept that people with disabilities deserve the same rights that we do I feel my children have more chance of showing the world what they have to offer. This is why I believe in writing and sharing my experiences like other parents out there so that hopefully my children can step in to a world where disabilities are considered but not made to hold those who have them back. 
Having children who have hearing loss is hard. I am forever feeling like I need to apologise for their loudness and their bluntness. My eldest has a mild loss and wears hearing aids and recently was bullied and told to stop staring at people. Yet when she explains why it becomes easier to understand when you are an adult but not when you are a child. You see she is not intentially being rude it’s just as she uses lip reading to help understand conversations around her, she looks at people’s faces and body language. If hearing loss was more talked about I feel that people would understand better. Another daughter with moderate hearing loss faces different issues, she struggles with high frequency words and again uses lip reading and body language to make sense of the world around her. Speech is such an important part of who we are and communication is everything. Not being able to communicate can become a very distressing and upsetting prospect. Relationships can become strained as there are barriers. 
Since the new born screening programme came in hearing loss is is picked up earlier and children can be given the care they need to help them but that doesn’t help others who do not know much about hearing loss. As a parent I tell people and are open with them that my children have a hearing loss. In previous years when my confidence was low this was extremely hard and I would frequently get embarrassed if people stared at us or stared at my children’s hearing aids. After confronting one person once about staring it became apparent that he was just fascinated as he had never seen young children with hearing loss and that he had always assumed it was an elderly person disability.
 After that I became more confident at being able to explain my children’s hearing aids as humans we are very nosy, intrested but most of the time prone to staring as we are afraid to ask. My children are no different and will stare at people in wheel chairs or people who are different from them which I teach them is wrong and that if they are intrested they should go and talk to them. My eldest has done this to a poor lady in a wheelchair. She wanted to know why and after speaking to the lady she assured me she wasn’t offended but rather happy that my daughter would take the time to talk to her. Don’t get me wrong I can’t speak for every disabled person out there but I know that now my children are getting older they would much prefer someone ask than stare. It’s how they learn and share awareness isn’t it?? 

Don’t get me wrong it’s not an easy task to teach any child right from wrong but teaching your child to accept k that has been started and we live in a world where everyone is accepted regardless of their disability.

The ADD diagnosis that another of my children has is the hardest disability as a parent to cope with. I find it extremely challenging as a parent as ADD and ADHD are still viewed by some as just a naughty child and how I must be a bad parent in some way spoiling my child or that it must be because I can’t cope. Having four children is also a no no in some people’s eyes. Thing is I can cope, it hasn’t broken me yet and the worse part is that some days it is not my child that causes me pain but the thoughts and actions of others. I feel I have to explain my child’s disability when meeting anyone new so they know straight away that there is a valid condition that makes my child act out. I feel shame and worry that old prejudices come to the forefront of a strangers mind and that they think I am being silly and I just have a naughty child, a bad apple amongst the four of them. I don’t!!!!!!
Having disabled children does make you open your eyes to the plight of others. I never dreamed I would have children who had disabilities. No one in my family has anything and even the children of my siblings do not have the hearing loss or ADD that my children have. The disabilities my children face are by no means life threatening or emotional as what other parents go through, but for us it can be our own tiny world of emotional turmoil. I still feel occasionally like a failure compared to my siblings. That I must have done something wrong to be the only one with children who are viewed as different. I feel shame when my children do something that is not perceived as normal but can be explained due to their diagnosis especially my daughter with ADD…….but I never fail to feel that love, protectiveness and proudness that I felt when they were younger and free of any labels. 

Everything thing that my children accomplish makes me feel such amazing warmth and awe and that as young as they are they will continue to forge a path through whatever comes and be amazing people ready to help anyone and pass on their strength and experiences to those that are around them.

Children are not born prejudice or judgemental, they are born inquisitive , looking for knowledge and accepting. It’s this that we need to encourage
To follow our story on Facebook search @Leannesihm
X Leanne X

Transitions, EHCP Ramblings…..Sloppy Life in Realtime

The last few days have been the hardest I think I have had for a long time. My brain feels like its on auto pilot, its on a non stop rollercoaster and I can’t see the end. I am screaming on the inside while trying to look normal for my children, family and friends. So sorry but here is as good as it gets my brain is fried, here are my ramblings…..

Why….

EHCP’s, Transition to high school, impending residential trip, family holiday’s, work, hospital appointment’s, general life……

holidays planned

As a parent of children with disabilities life is never quiet or simple or normal…… there is no getting away from it watching my sister’s I envy them some days because everyday there is something else I need to remember, something else I need to do, to tell, write, ring, order, the list goes on and on. To have a bat shit crazy couple of days feeling like a legless jelly baby who hasn’t a clue what they are doing is normal right? Life gets to us all so if you see me in the street with a bright red face, unbrushed hair, no makeup and looking like I walked of the page of a 70’s catalogue its because I am trying to be a mum, carer, advocate, researcher plus everything else. I go to sleep dreaming of the printer and what its going to spew out next, I wake up to the face of my 10 year old daughter grinning at me before commencing with the first of many rude words, screams, shouts, tear’s or just plain crazy bouncing of the walls until the medication kicks in and she can calm down and concentrate on getting ready for school.

The life of any parent is filled with ups and downs….

Its no different for any parent, we all worry the same, we all do the best for our children the same way and we all have good and bad days thats what I keep telling myself.

So why do I feel like I am loosing the plot well the EHCP for example….theres so much conflicting information out there I feel inadequate in my role as a parent in best supporting my child. Anyone who knows what and EHCP I bet knows what I mean. For those of you unsure its the education, health and care plan which is for those aged 0-25 who have additional needs and is there to coordinate your child’s educational, health and social needs and it also sets out any additional support that they may need. To me its a mind field, another obstacle which I have to try and hurdle over but with amazing people behind me and with the right knowledge I will go blindly forth and try and get my daughter the support that she needs to keep progressing and being able to live as normally as she can and be able to access everything there is to offer in this world.

Hanging around in her hammock

Then couple this with the impending transition to high school and I feel like a first timer when in fact this is my third child to go to high school. In reality I think I am unprepared mentally in the back of my mind we are not near that stage but in reality we are. This period in our lives has crept up on me so quickly that I haven’t had time to process it never mind my daughter although after a positive look around the school she hasn’t mentioned high school since. With my older two its all they talked about for months before starting year 7. Here in lies my biggest worry as I am unprepared and so is she and it also makes me realise that maybe some part of me has not fully been able to process that my daughter has special needs. Does that make me a bad parent, I don’t think so its just I have tried to stay strong and keep things together and try and make life as normal as I can for my family when in fact I am scared that if I drop a thread our whole family existence will start to unravel like it did 4 years ago.

Raising disabled children is a juggling act. There are so many balls that I am afraid to drop but I have managed to keep them all in the air so far but when there are balls added like high school, the EHCP, new appointments, referrals I am so worried that at some point I am going to drop something and as a parent thats what I have nightmares about.

So tip to myself…..look after myself, take a break, delegate, ask for help, have a massage

take care

x Leanne X