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………

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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

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.


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?

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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

woman looking at sea while sitting on beach
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.

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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.

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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

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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

Lockdown struggles and Resilience

Wow it’s been a while since I have been able to put pen to paper, that it’s taken for England to be in another lockdown is just an excuse really. Happy New Year!! Can I still say that now?

L brown

Life has a funny way of being hectic and non stop. When you are made to stop by something like a national lockdown, I sat for a little while last night and wondered where has the time gone and what have I been doing? Do you feel like that? Living is a funny thing, it’s something we do, sometimes on autopilot. For me it seems that way!

So what’s been happening for us? Where are we? What’s going on?

Quite a lot in the background, raising children is no mean feat. Raising children with special needs and disabilities is even more so. We moved house, we won an education health and care plan for one of the girls, we went through national lockdowns 1 and 2, we lived through no GCSE’s, our eldest started college, I went back to work as a massage therapist for a few months and we attended a few hospital appointments, had a covid test which was negative, an operation, sat through video calls and filled in paperwork. We wear masks when we go out, we haven’t shopped in any Boxing Day sales, we didn’t see family at Christmas, we have had 5 lockdown birthdays, we haven’t stock piled food but have eaten more than we should have.

I find at the minute it’s a lot like being a PA but without the perks!!! Definitely without the money…..

L Brown

We’ve also watched our children grow as individuals, we’ve watched their struggles, their resilience, their heartache, their sadness. We’ve watched them adapt as much as they can do and struggle with adapting. People think that it’s easy for children to adapt. It isn’t they get frustrated and annoyed and upset as much as we adults do. When they have disabilities and learning difficulties this can be amplified and even more destructive especially to their own mood and tolerance levels. We have been battling low moods and anxiety for a few years now but the last 10 months have tested even my resolve to keep my children on an even keel.

L Brown

What advice do I have?

  • Well for one don’t loose your shit, it makes no difference to how they feel and makes you feel even worse. Your patience is going to keep being tested, your buttons are going to be pushed!
  • Set a side me time, a walk, a bath, walk down the garden, have a cuppa and breathe.
  • Don’t force the school work, I learned early on with no school day there is less motivation, we do 4 subjects with about 1/2 hour on each, if I can’t motivate them we do something else such baking or walking.
  • Hide the snacks!! When they are bored they eat…so do I!!
  • Get them outside as much as possible, this is like trying to organize a large scale event where the stars are drama queens, my teenagers fight me at every step trying to get them out of the house, suddenly no internet usually gets them moving.
  • Laugh, this is so important, laughing releases good endorphins which make you feel better!
  • It may feel stupid to make plans now not knowing what will happen but talking about what we would like to do when we can helps to give us something to look forward to.
  • Be firm but loving, I feel crap, I miss my family, I miss my friends, I’ve taken up Instagram, don’t forget they feel these things too

Take it easy on yourself remember your mood affects their mood. Love them, support them as much as you can and give your self a break and a clap on the back. We can get through this!!

Xx Leanne xx

It’s been Life in Lockdown

Since march 23rd 2020 the whole country has been in lock down due to the Coronavirus. Before Coronavirus entered our lives I was mother, wife, carer, housewife and massage therapist. I did what I considered at the time as mundane tasks, the school run, the ironing, hoovering, form filling, attending appointments, cooking meals, running from one activity to the next, looking after my children and arranging holidays. 2020 was to be the year that I finally went abroad for the first time, that as a family we would visit beautiful Scotland in the summer, it was also to be the year I finally tried to get my manual driving license ( yes I’m one of those who can only drive automatic’s!!). March was going to be the month that our youngest would finally see a paediatrician about ADHD and Autism. The forms for an education health and care plan referral were just sent in (literally 3 days before lockdown). We were also informed that we were being considered for a larger house closer to my sister’s.

I literally and suddenly became unemployed, a full-time mum to 4 girls around the clock with no outside help or support, a housewife with not enough to do in a day, a 24 hour a day carer with no respite of any kind, a teacher to 3 teenagers and a primary school age child. To say this was a shock to the system would be an understatement. I had good intentions honest!! I was going to write about our journey, with the help of my husband I was going to be the perfect home school teacher with a routine all set out, we were going to ensure the girls were happy, healthy and that my husband and I both remained sane…….

Then the coronavirus happened and when we officially went in to lockdown on march 23rd I, quite for want of a better set of words, shit a brick. How the hell was I meant to be able to stay at home and teach my children? What would happen to my business? How would my husband cope working from home? what about family and friends, especially those on the front line? I see my sisters nearly every day now I wouldn’t be able to, and selfishly what about hospital and assessment appointments and referrals. We had only just started to get the ball rolling to support our children.

In reality its been a huge learning curve. I can’t be everything no matter how much I try even with my husbands help. Instead I have learnt a new found sense of respect for anyone in the teaching profession…my god, I’m not thick. I did well in my GCSE’s they got me to where I am today but the thought of sitting down to help any of the girls with maths gives me hot flushes. If you then factor in the learning difficulties of two of them and the fact they are not in a routine then schooling was a fail from the start. Even after we had mastered Google classroom, trying to keep my youngest engaged in the work set was (I mean is!) exhausting. Having an extra pair of hands in my husband has meant there are two of us, each able to support the other and the girls. My older two are happy enough to sit and work through work set but when you have one child disrupting the rest well…..

Its been a slog. Being the kids be all and end all has been exhausting but at the same time exhilarating we’ve:

. put up tents, played in the garden, grow seeds

. cooked marshmallow and bacon on open fire with Dad

. made art, coloured, painted, got odd jobs done around the house ( having a builder hubby comes in handy)

. made music, sung

. Danced, cooked, laughed, cried

. shouted, argued, made up

. baked, taken lots of photo’s

I suppose what I am trying to convey is that no matter how we have spent the last few weeks, its involved us doing only the best that we can. We can’t all be amazing teachers, some of us have had to work, for some thats been on the front line which is a scary place to be. I am truly in awe of all those who have forged on and kept our country moving and safe. My own sister has spent the last 7/8 weeks helping those in the community who need our help the most. A lot of us have had and still have money worries, may not be in work but with kids at home and food bills going through the roof. The hubby has been working and so bringing in a wage which has eased the worry here slightly. Although I still feel the sense of loss of independence through not working.

Take a step back and give yourself a huge pat on the back, but remember to also take some time for yourself, wether its sitting in the garden, having a walk or a bath. Talk to your family, your husband/partner. Remember you! its hard I’m so use to focusing on the girls all thoughts of me go out of the window until my husband and sisters remind me to not be an idiot. Its been one heck of a journey, one hell of a year so far, being a mum with disabled children well….more about that next time

Take care XX Leanne XX

Our Family and Covid – 19….Our Journey

So after trying for several weeks to put the psychology assessment to the back of mind a few weeks ago one afternoon an email dropped into my inbox.

On seeing who it was from I could feel my heart starting to pound and the tears starting to gather. Just seeing the name of the psychologist sitting there saying I could find a draft report attached got me feeling so emotional. I didn’t know whether to just read it or tell someone. In the end I opted to read it, then tell someone.

In a nutshell here was a document that after 7 years or so of ‘parenting’ and ‘deafness’ comments being blamed for how my daughter is would finally say one way or the other. It would also shed new light on things we hadn’t considered and would be something that I could share with close family and friends.

The report firstly is very in depth and there is a lot of information in the 11 page document. What got me and my husband was how well it fit our daughter, her strengths and her weaknesses, her difficulties and her love. It showed that there were aspects of our Childs cognitive skills that could not be blamed on her hearing loss, or the way she was raised. It also highlighted that there was not a massive discrepancy between what we see at home and what is in school in regards to progress, her strengths and difficulties.

With the report we have now started the ball rolling in regards to a education health and care plan referral. It took me about a week to fill in the form and collate all the evidence I needed to send with the report and it went into the post box Friday 13th March (good luck for some not so for others). Fast forward to Monday and Tuesday and with the updates from Boris Johnson and advice from the government officials I know in my heart of hearts that the timelines for the ECH plan will be changed and the whole process could/will take longer. The future is now so uncertain with the coronavirus and with news on Wednesday that schools were shutting from today ( Friday) its easy to start and be complacent and put education needs to the back of my mind but I can’t!!

Taking the time to read and process

And I wont….I am going to do my best to keep an open mind and support my Childs special educational needs and possibly even give her extra skills in which to cope with learning. I am by no means a teacher, but with work being sent home and so much available online I plan to keep a routine of sorts in place as well as enjoy having my children around ( in Parts) and teaching them a new skill British Sign Language. I am not going to place expectations on my children, I will try and be flexible and caring and above all be a mum.

I also need to support my year 11 who has had her GCSE’s cancelled this year due to the virus. We are following closely with developments but its a difficult time for the class of 2020 who are forever more going to been known as the year group who didn’t sit GCSE’s. This has also had an impact on her mental health, her potential future in a world that values exam results and I worry that she will stagnate before the year is out.

This is going to be so difficult time for many of us as now we are advised to stay in, not socialise and covid -19 is overtaking all aspects of every day life. We’ve had an operation cancelled, regular check ups cancelled, doctors appointments moved to phone calls and I am worried about the medication needs of my children throughout this period of our lives. I’m worried about my children’s health, their mental well being, the health and mental well being of my husband and I.

The flip side of this makes me sit up and realise just how much I was doing!! how many meetings, appointments, phone calls, form filling in sessions, evidence gathering, report reading, learning and researching I have done just this year alone. Theres also family life, shopping, working and being a mum, wife, daughter, sister, friend… the list is endless. What will we be left with once Covid 19 has run its course?

So instead of charting just our SEN journey at present join the Brown Family as we tackle life in 2020, the highs, the lows, the oh my gods and the successes in the midst of a year we and the whole world will not forget in a hurry.

XX take care, of each other and those around you XX