We Have to Believe in ADD Magic

Its that time of the year again, it’s December nearly the end of the year and as I sit here writing this I am starting to realise how shattered I feel. My whole year has passed in a flurry of hospital and check up appointments. living our lives from one appointment to the next is really starting to annoy me, it feels like I am losing time and year’s living a life based around my children disabilities. Do I sound selfish? Am I not better to spend my time thanking my stars that my children do not have more severe  need’s? in fact should I even be thinking and feeling this way at all, after all I decided to have children………

Having three girls with varying needs is exhausting no matter what those additional needs and disabilities are. Any parent who has to spend most of their time worrying, stressing, upset, nervous, anxious and being on that emotional rollercoaster should be damn proud of the things that they achieve daily, even if its just managing to see friends or tidying the house. Living, working and making a life for ourselves and our children can at times feel like an empty black hole. We don’t get thank’s for what we do, I feel like at times I am my daughter’s battering ram, they can’t take out their feelings on anyone else so the but stops with me.

Christmas is a magical wonderful time of year isn’t it? No Not all the time, sometimes it’s hopeless, energy zapping, bury your head in a pillow type of magical. Christmas does not herald the end to your daily routine’s in fact it makes these harder. I have to worry about medication and if we will have enough, I booked a Christmas food shop weeks ago…. did I order everything I need or am I going to have to go out and get it with the kids in toe? They break up from school on a Tuesday….a bloody Tuesday like thats not at all confusing for a child who is so use to routine is it….there’s going to be fall out from that I can tell you, I have booked tickets for a show which I dithered about doing so I settled on spending the money and making sure we are at the back near an exit just in case we need to leave…will it be worth it with the crowd’s and the change of routine? who know’s  Christmas can feel at times like a waste of time and so disappointing for me at least the children never seem to think so which is amazing.

 I just feel so sad that my year, and my children’s year’s can be counted down by the appointments my girls attend, from Audiology to paediatrician to ADHD Nurse to even school meeting’s. They all add up and whats even worse is its never ending and I am already booked to next August with Audiology appointments. There is no getting away from the fact that our family life is a plethora of hospital appointments intertwined with birthdays and that I am getting older and more cynical as time goes by.

BUT……….There is one thing that this family has not yet outgrown and that is the magic of Christmas. My 13 and 14 year olds love the magic even though they know there is no Santa and its nice that they are now starting to take part in the xmas shopping. As for the younger two 11 and 7 years Santa still very much exists and we have been having some great fun (me and dad that is) helping those naughty elves to get up to lots of silliness. In a world that can be dominated by the symptom’s of ADHD, the lack of concentration, the memory issues, the anxiety, the inattentiveness, the daydreaming, plus the hearing loss, and other medical concern’s, the worry of appointment’s that are still to come around, this little bit of fun and laughter that we all have down to a couple of little elves may seem to the on the outside desperate and silly but to us it is a break from the norm and it is something that I can do at the end of the day and know that come the morning my children will wake excited and happy at least until the elves are found and then the drudgery of the normal day comes back full force.

Here’s a hug for all the parent’s this Christmas time where ever you may be and how ever you spend this Christmas remember you are amazing……….

For more tip’s on how I cope at Christmas see our previous Blogs x

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

Sibling Wars….Living with Mental Health

Stop press….. Who ever said parenting was easy should come and live in this house. On a daily basis I feel sorry for all my children. Each special in their own way, each trying to grow and learn and each of them struggling with Mental health.

Mental health problems in children and adolescents is not a new concept. Its documented all through history and has been researched, so why in 2021 do we still not have enough support for children.

Photo by Lisa on Pexels.com

There is no simple answer for this! Services are like a postcode lottery and are so strapped that they can’t take on anyone unless they are at risk! doesn’t at risk mean before they actually hurt themselves? Nope its not about prevention its about waiting until the shit is hitting the pan and then every agency quickly trying to look like they are doing something to help an already tenable situation. The whole system is crap and as a parent I have a right to say this, I have 3 daughters who have self harmed, born of frustration, stress and anxiety but no one wants to listen while they are only biting themselves or head butting walls or screaming that they don’t want to be here. The truth is being fobbed of that its covid induced is just a farce, services were bad before covid now its just horrendous. In hindsight I should have pushed harder, its what I’m going to do from today, I’m going to call out the inadequacies of an outdated system and I’m going to try and ensure that my daughter gets the help she needs and to ensure her survival into old age.

Self harm and suicide are not acceptable at any age, and its certainly not acceptable when those are children and they have needs which are not being addressed due to a system which fails children and takes so long to diagnose and give them the support that they need. Ever been told your family isn’t bad enough? you don’t tick the right boxes? what the hell, how is anyone suppose to fit into a box? are girls and boys the same? does one size fit all? Hell no so why are we still taking years to get diagnosis of neuro-develpmental conditions which are resulting in our children and adults being more at risk of developing mental health problems due to a lack of support, a lack of knowledge? its crazy absolute madness and as a parent of girls if I wasn’t strong enough I would be sitting here blaming myself for my daughters mental health issues as many families do, and society would be sitting here condemning me as well as a crap mother – which I am not!!

I do all I can for my girls, I have 4 daughters each as different as the next, all with their own personalities, their own traits and their own amazing, beautiful souls that make me proud every day to be their mum.

• My eldest is 17, has a part time job, attends college, diagnosed with hearing loss age 5 she has taken it all in her stride, she works, she studies and she copes with the stressful family life.
• My 16 year old is strong, fiery and beautiful inside and out. She helps anyone and will stick up for what she believes in even if that gets her in trouble. She has a potty mouth but means well. Was diagnosed with Non epileptic attack disorder in Aug 2020.
• My third daughter is 15, has hearing loss, ADD and has been accepted for Autism assessments. She’s beautiful, talented, has resilience in bucket loads, always tries her hardest, loves to please people, loves animals. She lives with daily battles of being out of her comfort zone, dislikes disruption to her routines, struggles academically but always has a beautiful smile, she self harms and recently took a paracetamol overdose.
• Then theres our cheeky youngest age 11, and she really is cheeky, obsessed with football, giggle a minute, beautiful, She also lives with daily battles of being out of her comfort zone, dislikes disruption to her routines, struggles academically but always has a beautiful smile. At 11 She is still growing into her skin but if she is anything like her sisters she will be strong, fiery and a force to be reckoned with.

As much as I love them all, living with them is Hell on earth. living with disabilities and special needs is like living on the edge of a volcano which may or may be erupt. Cat fights? we have them, Swearing? Yep in bucket loads its like being on a building site of old with F this, F that!!! Fighting with physical contact? YES YES YES some days they are fantastic, other days they are little vipers. It certainly keeps me on my toes.

I try to stay in charge and most days in control but how on earth do you tell someone off when you are chest height on them? The eldest three are now taller officially taller than I am ( well its not hard I’m 5ft 4′ at a push ) than me and they look down on me, add in that they are also stronger than I am. Its certainly making me feel a little inadequate – the suggestion has been made about using a yellow pages? Really do they still exist? where can I get one? in all fairness I think I need to loose weight and bulk up haha

On a serious note though, its not easy for any of the girls, to live together sharing rooms and space. Its equally difficult when you have to factor in the special needs and disabilities and mental health as well- we are definitely no ordinary family. The girls all like their own personal space and we as parents just can not afford to give that to them. Arguments are like normal conversation, factor in the hearing loss and its arguing at decibel 1000, my ears literally ring from the noise and trying to get between two of them fighting well means I come away nursing a couch of bruises. We have it all in this house, typical teenage behaviour clothes stealing, someone saying something the other don’t like, battles over who is sitting where in the car, clean your room, move your shit, wheres my….., who’s got this and who’s taken that – only its heightened with each individuals need to control their environment, struggles with communication and struggles with thoughts and feelings oh god some days I feel like walking away……Would boys have been easier I wonder?

BUT….I can’t walk away, these girls no matter how they shout at me, argue back with me, struggle with thoughts/feelings and hormones, they still need me and dad. They need compassion, love, support and a good role model (me with a glass of gin hiding in the bathroom). For all they think they can strike out on their own its me and Dad who are there when they are scared, hurt, tired, lost their bus ticket, trying to bike home in a downpour, need help with misunderstandings and to just love them for who they are. Their mental health struggles are no different, we will do all we can to support, nurture and love our children.

Always here if someone needs to talk

XX Leanne xX

Just Keep Swimming……Children’s Mental health

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 Brown

When 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 once
• On 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 doing
• Trying to maintain a normal environment, keep the balance
• Confused – with an open relationship, mostly 1:1 with both L and E how did we miss the signs
• Angry – I did get angry with her, I called her selfish, gut reaction and something I feel ashamed of
• Let 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 scream
• Resolved 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 again
• I 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 course
• Most of all I want L to be happy and healthy and to lead a long long life doing what she loves

Having 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 what
• even amongst the bad days of meltdowns, anxiety, tantrums, screaming and upset there are bright days of laughter and joy
• each 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 saves
• We 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, advice
• Self 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 all
• Make 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

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

A Carer’s Support System – Looking after my Mental Health

When things get difficult who do you as a parent, husband, wife, son, daughter, brother, sister, friend turn to? As a Parent / Carer who do you have to support you? Having a support system in place is one of the most valuable assets any human can have especially those of us that raise and Care for our children. Having children with special needs and Hearing loss and mental health is exhausting and can at times take over my life.

Having a support network isn’t always easy though. Some of us struggle with family who don’t understand and who can be unsupportive and judgmental and friends that distance themselves from you. You may be like me, I seem to have a habit of distancing myself, keeping others at arms length as if some part of me is trying to protect them or me. I feel guilt if I offload my feelings and I have become adept at hiding behind poker faces and closed doors either that or totally losing my shit over the smallest of things.

For me though it all came to a head the other day, a DLA (disability living allowance) form dropped through the door, coupled with an EHC plan referral form, Point 1 ( childrens talking service) parent needs assessment form, a Hospital appointment form and my head and heart just wanted to explode. I actually sat there and cried. To someone on the outside this may seem crazy behaviour but for those of us caring for a child with special needs/ disabilities this is unfortunately a common occurrence and something that we can all relate to. Every step you take is dogged with forms, assumptions, judgments and its also a fight. You have to fight for everything that your child is entitled to and they do not make it easy at all, there are days you just want to hide away but you know that if you do your child will not get that they need in order to live as “normally” as they can.

My sister’s, bless them happen to text most days, even though we haven’t been able to see each other in person due to lockdown they are both there on the end of the phone. I don’t know if its the bond between us but they have no problem picking up on my mood and will always ask me if I am ok? Such a simple word… Ok…. but how many people in your day, week, month, ask you if your ok? On bad days this one word has the power to open the floodgates and makes me in to a blubbering wreck. More people should ask ” are you ok?” and get conversations started, even if they can do nothing to help that one sentence can make a difference to how a person is feeling. During lockdown ITV has a campaign going called “Get Britain talking”, as humans we need to communicate, we need to feel the bond and empathy from another human being. As parents of children who need so much more of our time, care, support and love its sometimes easy to forget that we are also human beings, with feelings and thoughts and needs. If no one has anyone to reach out to, I am always here to listen, chat to and to ask you ‘Are you ok?”

So just before Christmas my husband and sister both said there was something different about me, I was losing my temper, becoming reclusive, moody, not sleeping and that maybe I needed to ask for help. At that point I realised that gain my own mental health has taken a slight tumble. For me these warning signs are when I start to realise I need some extra support. I don’t want to go on tablets, I actually have a real stomach turning fear of antidepressants from growing up with family members taking them but sometimes it’s not a case of me letting myself or others down, it’s not a stigma having these feelings and needing help, if the GP feels I need something then I want to be able to be strong enough to accept that help and get well. I am frightened to death that my Non epileptic attacks are going to start again. So I am back on the sleeping pills. No judgement, no beating myself up, no thinking I am failing – I’m not, medication doesn’t make me who I am, I’m strong, I’m Mum, friend, sister, daughter, carer, I am just me.

Family

If like me you struggle to recognize how your feeling write down your triggers in a diary, on a sticky note, on your phone then write down how you feel when your happy and feeling safe, Emotionally stable and healthy and put them somewhere safe to refer to. Then if your suddenly thinking one day I feel a bit down, or why am I crying? look at your list and if anything has changed please talk to someone wether it’s a family member, friend or professional or even one of the many support groups. Share how you are feeling and seek help if you are feeling too overwhelmed.

Do not suffer alone!!! You may think you have no one to turn to but there is always someone wether it’s on the phone, a charity or someone that surprises you. It’s hard YES it can be embarrassing YES but you are just as important as your children and looking after number 1 is part of parenting and caring.

Xx Leanne xx

Did You Realise Your Only Human? Look After Yourself

I’m writing this blog, curled up on the sofa, in an empty house. My girls are all at school and college and my husband is out at work and for the first time in four days I’m allowed to just sit and think and feel. Last week was just like any other school week. With a school refuser and three other daughters to ensure get where they need to be I literally run on fumes from a Monday morning to a Friday afternoon. Theres no time to think, theres no time to relax its full on, high octane drama in this house. Its busy, loud and some days its just a case of getting to the end of the day, trying to fit the housework, paperwork in anywhere you can, anyone else feel like that?

A school day? Its like being in a vortex, I go round and round in circles saying the same things, doing the same action’s, being yelled at and having frustration taken out on me and literally by 9am my systems are all fried, I tired and I only have 6 hours to recover.

leanne Brown

In hospital

Who am I?

To the outside world I’m a married 37 year old mother of 4 children. I’ve built up my own business with Massage therapy and I am mostly found on social media or completing a course or two. I love going shopping and spending time with family although I can be a bit of a home body and hermit. In my world though, I’m the peacemaker and enforcer, the meal maker, the clothes washer and repairer, housewife, child minder, taxi service, I’m the comfort zone or the punch bag depending on their mood, the pen pusher, the washer upper, the appointment attender, the hearing aid fixer. After 14 years of this I was on the edge anyway, add in a couple of lockdowns and….I am broken

So what happened?

Thursday, I started to get pain in my chest when I breathed in deeply and it hurt to lay down. Being overweight there’s always worry that I am more at risk of something happening, factor in there are days that my heart literally feels like its trying to climb out of my chest I was worried, but due to one of our daughters being quite physical at the minute I decided to not think much about to and just assumed that I had pulled something or I was run down which unfortunately happens a lot, I also tend to feel even worse when we have a cloudy day, or if there has been an increase in anxiety and stress levels. After yet another difficult morning on Friday with my youngest I decided to go to the GP as the pain was there when I breathed in. Long story short I ended up with several trips into A&E Friday, Saturday and Sunday having various blood test’s, X-ray, CT scan and injections of blood thinners for a potential clot. I literally shit a brick!! Eventually tests showed that I was alright and didn’t have a clot but at the time I just remember thinking ‘what are my kids going to do if Im not here?’ Now I am overweight, I don’t eat properly trying to fit in around the kids and I’ve always had issues with my weight and eating when I feel down. I was also until October last year a smoker until I realised that I was literally only doing it when I felt stressed and that actually I needed to stop, except I replaced it with drinking coffee, like a cup every hour between 7am and 4pm.

As a parent of special needs and disabled children their needs invariably come first. As parents we all put the needs of our children first, its what it means to be a parent isn’t it? To protect and care, nurture and teach our children? Then at what point do we take a step back and look at what we need, when do we see that giving our everything actually makes us weak and susceptible to physical and mental health issues? To be truthful its most likely to be when we become unwell, when we have nothing left to give, when we are exhausted and even then sometimes its to late to change the course we are on and instead we slip through the net. This episode definitely scared me and as I sat alone in the hospital made me realise that I need to look after myself better.

Mothers Day from my Girls

The last few days has definite been a wakeup call, but its also highlighting that really there isn’t anything different that I can do. I’ve tried everything to try and make the school to home and home to school transition easier for our 11 year old but nothing seems to help or work. I still have two daughters with mental health concerns and with a tendency to hurt themselves and we still do not know when or if they will get any help and support. We still have daughters with hearing loss so family life is loud and busy, l still have zoom calls, meetings, paperwork to look at and fill in, theres still housework to do and meals to cook, even with my husband and older girls helping theres still so much that needs to be done to keep everyone ticking over and being where they need to be. With me being unwell all of this just gets harder and makes me feel even more incompetent. The children feed of my mood and are also worried in their own ways but do not know how to show it. Its a never ending cycle that has yet to be or never will be broken.

So what can we do?

If I have taken anything from the last few days its to never take anything from granted. Remember that you are you, you need to take care of yourself and you need to make yourself number 1 – difficult? Yes it is but what choice do we have, I do not want others looking after my children, I want to see them thrive and grow and become adults as much as the next person but I also want to live and to learn new things and to be an adult, a wife, daughter, sister, friend. So starting from this week;

. If I feel unwell in the future I’m not going to pass it of and leave it. Life is to short as it is never mind becoming unwell and not going to get it checked. You owe it to yourself to be healthy!!

. Giving myself some slack, if the hoovering hasn’t been done for a few days so what.

. I have a EHCP (Education health and care plan) to check through but I’m having a couple of days rest first, I have time.

. Make sure you eat and drink properly. I am terrible for snacking its why I am fat but I’m going to try harder. Family meals this week will be simple – sausage and chips last night chicken and mash with veg tonight, I’m done putting pressure on myself to prepare more elaborate meals – does that make me lazy?

. Now that restrictions are starting to ease, I’m planning for spending time with my wider family and support network, nothing big just a cuppa here and there

. Making time for me, its hard work being a mum, or dad but taking even just 5 minutes out to just think and breath can make a difference to how you feel, there are even days where I escape to the toilet just to have a minute (‘are you having a wee mum?’ ‘Nope’ and they disappear like the wind haha)

If anyone is struggling please speak out, you may think your not being heard but eventually you will be!! if your not feeling 100% go and get checked out, as a parent / carer we need to ensure we are healthy and well, don’t wait and don’t think you are wasting their time, your not!!. I’m always here should anyone need to talk – no judgement

XX Leanne XX

Neurodevelopmental children…OMG the shops are Re-Opening!!

If you saw me in the street or the supermarket with a 11 year old child, who looked more like a 15 year old, sat on the floor screaming at me, red and flustered, crying, shouting and basically having a meltdown what would you…

• Think?
• Do?
• Feel?

Do you have an inside argument with yourself on what you should do for the best, do you feel uncomfortable, do you carry on walking past or do you stand and watch?

Photo by mohamed abdelghaffar on Pexels.com

Its a hard one to answer isn’t it? As an adult it is not considered appropriate to witness a child shouting at another adult in public, you may be someone that thinks they should be whisked away out of sight and away from polite society. Even if that child is hurling abuse and screaming at you while rolling around on the floor you are constantly aware of being judged. So my question to you would be “how would you try to calm the situation down? would you feel conflicted about getting involved so instead you walk away?” Truthfully…If I came across that situation I would want to help, I would say to mum “are you ok” and even if she ignores me hopefully she would feel a little less alone. Unfortunately as a society we tend to keep to ourselves as there is that fear of being misunderstood, of potentially making the situation worse for someone, of making them feel embarrassed. As someone that frequently ends up in public with a distraught child or teenager, the thought of a stranger coming over and seeing my fear and embarrassment close up makes me feel sick, but at the same time in a way it makes me feel that I am not isolated even when there is nothing they can do or say to help the situation. I would rather be asked than stared at.

By the way if your in a shopping mall and see a flustered mother running after what looks like just another naughty child, do not be so quick to judge. There could be lots of reasons why they are running away and feeling upset. To that child the experience of a shopping mall may be scary, loud and bright, especially if they have Autism. If the child has ADHD it may be heightening the already rising feelings of anxiety and stress within that child and they find they can no longer hold themselves in. Just move out of the way and do not be quick to judge.

When I think about the Covid -19 restrictions being hopefully lifted in the next few months and the fact that I am going to have to brave the clothes shops with my daughters I get a little bit of an excited feeling tinged with a Tic, and the hot sweats. Its going to have to be a case of send the older two of with money to hopefully get what they need and have my husband and I man mark a child each with the younger two. As long as we are quick, early enough in the day, with plenty of rest stops we should be ok. At least that would be the plan, but as with all plans something and everything can go wrong, picking a day that is too busy to go, entering shops that seem to love having the heat blasting out at all corners of the shop, people who walk past to closely and bump into you, shops having way to many choices (an Autistic and ADHD Childs worse nightmare), shops that have music blaring out, queues (omg the queues, why are we so good at queueing in Britain?).

As a parent is it reasonable to expect that if your child is feeling on tenterhooks, you will as well. Your also thinking of a millions different things especially as a parent of disabled and special needs children. You become exhausted before you even arrive, and anxious, OMG I love going to the city, walking around, having a look but not when I have children in tow. Children = stress

Photo by Pixabay on Pexels.com

Its such a worry that even in 2021, with so much that the country, the world even, has gone through in the last year, society as a whole is still judgemental. Mental health has been such a focus during the pandemic yet we are still waiting for help for our girls after referring them last march!! Help and support is few and far between, and diagnosis’s like Autism and ADHD, even though they are now more documented and talked about than ever are still not understood.

Tips going forwards…..

• A coping mechanism as you have heard me mention before is Story Massage. I sing twinkle twinkle little star in the car
• We talk about who needs what and what they would like before we leave the house.
• We make a list of items needed and shops that we want
• When we arrive we try and park quickly, get out and get to the shops, making sure to go to the toilet first
• We do not give them to many choices, this or that one ( thats it any more than 2 choices causes a meltdown)
• Regular breaks for a snack or drink, a small blanket can help to give them a break from the bright lights
• Try to go outside as much as you can, not always easy in a shopping centre or mall
• Download a favourite episode on your phone or a game you know they like and take headphones to help block out noise. You could also get the noise cancelling headphones but my girls don’t like them
• let them take their own back pack with their things in so they have some control

This can sometimes help stave of a tantrum but as with all aspects of parenting sometimes even with the best will in the world the kids don’t conform to our best laid out plans, and you arrive home broken and shattered and saying NEVER AGAIN!!
I tend to find I don’t go out very often unless it’s heavily planned

What works for you and your family?

Take care in these challenging times, love and support

xx Leanne XX

Sleep….Its not Happening

For many children with ADD/ADHD sleep can be a really stressful and upsetting time of the day. I know for us personally even with medication for one of our daughter’s, she still finds it hard to settle down and switch off. We battle constantly with periods of wakefulness, unable to fall asleep, defiance and problems getting into bed and very early starts to the day from both our undiagnosed (still)ASD, ADHD daughters.

Both of our daughter’s has their own very set routine. I call it Faffing, its infuriating, painfully slow and if I am totally honest, as someone who just gets ready for bed and gets into bed I have no idea why they:

•  Take so long so understand that when you say bedtime it is bedtime
• Have no concept of the bedtime hygiene even though it is a well oiled machine in this house
• Like to push boundaries and will fight every step of the way
• Will spend time in their bedroom during the day but come bedtime they are suddenly scared of the room
• Need every light on in the house and someone upstairs with them
• Goes to the toilet 700 hundred times as it means they do not have to get in bed
• We parents stand there like lemons
• It takes an evening to prepare for bed

If your own child is partial to routines how does that child react to a change?

With the pandemic there has of course been huge changes to everyones lives. No school has meant relaxed bedtimes and a change in routines. For us with the added complications with memory issues and ADD symptoms, routines if broken can cause huge anxiety, upset, shouting, screaming and even occasionally violence. One daughter is 11 years old and the other is 14 years old and as a mum some times I am scared of what they might do. It hurts to be hit and pushed just because they can not accept that yesterday they could go to bed at 10 pm but tonight mum has said its 9pm. They see it as I am being unfair, but somedays we would just like to sit on our arse’s and have an evening to ourselves with out constant interruptions.

One constant through the lockdown has been massage and Story Massage. Having a mum who is trained in massage therapy has definitely been a bonus for my children. The girls have grown up to story massage and are happy to sit and write about their feelings and then talk to me about it using massage stokes that they have learnt. Its an excellent way to help them express themselves verbally as well as bringing parent and child closer through positive touch. Story massage at bedtime can really help to diffuse anxiety and stress and its also a lovely way to end the day, but sometimes touch is not what they want and one of the empowering advantages of story massage is that they can choose to say ” no they do not what a massage”. When they welcome the opportunity my daughters love to be able to relax and have a story while getting a gentle soothing massage. Massage releases feel good endorphins and can also help to make us feel sleepy. even just a few massage strokes on the hand is enough to calm and refocus when our daughter is feeling wound up and in stress.

Currently we are battling the sudden onset of a most foul dislike of going to bed. Our youngest daughter will use any excuse she can to not go and get in her pyjamas when she is told to. We get the “but mum I just need to finish this” ” but so and so isn’t going to bed now” ” I don’t like to sleep” Not only does all this negativity have an effect on them and their overall mood’s but it effects everyone in the house and I’m sure the people next door as well, jeez they must wonder what is happening some night’s. Whats even more annoying is the nothing will have changed from the night before, so I do not understand why we have to go through the frankly depressing bedtime routine. Most nights I have literally just thought bugger it and not done anything to initiate bedtime, sometimes this is ok, other times though it means when I want to sleep she is still awake and will not settle.

Sleep is an essential part of our lives, no one can live without sleep. When we sleep one of the clever processes that happen is that we process memories and learning, we heel, our bodies relax and do not have to work as hard.  A lack of sleep means that the brain is not processing at the rate it should do which could account for when you have a particularly wakeful night your memory seems worse the next day. As I have mentioned in my blog previously it’s like living with someone with dementia. One of our daughters struggles with memory, She forgets names, places, what she has eaten and what she has learnt. Some days are better than others but trying to overcome this still has me stumped.

Our routine generally is as follows. Get ready to judge me!!

• Tea between 5 and 6pm
•  liquid melatonin for one daughter 9.00pm – the other daughter just has rescue remedy usually about 8.00pm
• no devices from 8.00pm onwards
• music, LED lights, black out curtains, fan for one daughter
• Bedtime hygiene – going to bed at the same time each night? WE TRY, personal care TAKES FOREVER, pyjamas, no devices, calming music

For some the bedtime hygiene includes a dark, temperature controlled room, no lights but with children with special needs you have to adapt to what works best for your child. We have tried so many different ways of doing things, sometimes with success but also tinged with things that did not work well. Our youngest daughter is a strange kettle of fish, for her staying asleep has never been an issue, its getting to sleep that she struggles with. She is very sensitive to temperature and will get very distraught if she gets to hot so we have to go against the grain and the bedroom hygiene and we had to put a fan in the room. Another bedtime hygiene we had to adapt was lighting, she is also very scared of being alone and in the dark so we have installed LED lights which can be controlled and once she is asleep we turn them off. Staying asleep is not the issue, once she is asleep she does not move until she is woken up.

I think I assumed that when they got older bedtime would be easier but to be honest I miss the early day of bedtime at 6pm haha

If you have any idea’s you would like to share please do get in touch even if they sound crazy we have problem tried it or willing to give it a go, maybe one day everything will slip into place….

xxLeannexx

Are We There Yet……Life in Lockdown

Are we finally coming to the end of what has been an extraordinary, challenging year?

Lets face it, the life of parents everywhere has been invariably change at some stage or point in time during the last 12 months. Life as a parent of disabled child has been no mean feat, the transition from parent to carer with the first diagnosis to Parent, carer, teacher in the last 12 months has certainly taken its toll on me and other parents who are in the same situation. At points there have been times when I have no idea what I am doing and where primary school work has made me feel like the dumbest person on the planet. Then there has been the endless 24 hours a day 7 days a week of having children under foot, with no spare room to move, breathe or hide. Groundhog Day at its finest!!!

We did it…….But Whats going back to normal mean?

We are so close now to being back to what is coined as normal, but what is normal? Is it going back to how life was before the Covid- 19 epidemic? What if your life wasn’t normal to start with? A lot of things have changed for all of us. Some of us have lost jobs, unable to work, some of us have lost their support bubbles. You can not socialise, you can’t see family, but what happens if all of these things were already happening before corona virus? As parents of disabled children, children with special needs, our lives are invariably changed as it is, many of us can not work as we care for these children, attend hospital, many of us can be isolated from friends and family. For me personally the biggest change has been the loss of family contact and the loss of a support network that I have built up over 14 year’s to help me, my husband and our children. They have supported me, cry or laughed with me, brought me down to earth or raised my spirits high, talked with me, shouted at me and been there at every step.

Was the last 12 months any different from the Norm for us? well we still had:

1. The challenges, pain, upset, tantrums of leaving the house and spending a leisurely day out, or a day out shopping meant we were already well versed in not going out and so we were slowly becoming more and more isolated and limited in what we could do as a family well before lockdown came along and prevented us from going out. A simple trip to the beach means mammoth preparations and thought before we even decide what day we are going.
2. Never ending no change in routine, yep even though we are in lockdown the girls still need that consistency, that feeling of normality that makes them feel safe. we have had to adapt no end in order to try and keep the routine of wake up, get up, daytime, night-time routines in order for the shit to really not hit the fan.
3. Not seeing family, family gatherings, large gatherings, busy places? No problem with this at all the girls have been more than happy to do their bit and stay away from people, I need the support network hat I have around me and even though the girls do not love to have family around and can get bored very quickly they have adapted but I haven’t. I’ve felt isolated, alone.
4. The endless lists and regimental structures to our days. Not being able to be random or arrange surprises.
5. clothes shopping, food shopping, shopping of any kind? Dragging ( yes in some cases this actually happens) my children into the city, no matter the time of day has to be the most excruciating experience ever. Ever since they could learn to walk and leave the pushchair behind this experience is one that is enough to leave me with palpitations and in hives. why do we do it to ourselves? why? for me its simple, it means that the clothes are there in that moment, the food is available straight away. My girls are very tactile and like to feel the fabrics ( no trying on though they have to be washed first) and then there is price!! The clothes I want that are priced reasonably you can never seem to get online.
6. The faff of waiting for the clothes or other item’s to come in the post, sending them back if they don’t fit, or are broken, waiting for the refunds, its just to bloody annoying when you have impatient little cherubs – ‘when are they getting here’ ‘ why are they not here yet’ ‘ where is the postman’ if the girls need something they invariably need it there and then, patience is not a virtue in this house at all.
7. Long waiting lists for Diagnosis and professional help……Still the same but now will invariably be even longer and less support available

The biggest thing has been……

I have missed the close knit, support bubble of family and friends. Being in lockdown has meant not seeing family, not going out with friends, its meant no respite, no rest, no chance to recharge my batteries. its meant as a family we have been isolated from help and support and like thousands of other families through out the world, in a time of our lives when support, familiarity, help and care from the people and professionals around us is what we have needed to get through this. It’s been taken away and we have been left, alone, frustrated and praying for the end of the pandemic so that we can once again resume what is normal for us. Then there is the fact that the children have missed out on help and support for their disabilities due to long waits and no face to face appointments.

Last family gathering

Its been a long 12 months, but the end is in sight with projections for a restriction free summer and hopefully an end to the pandemic – Hang in there we will get through it together

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