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

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

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

When things get difficult who do you as a parent, wife, daughter, 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, friends that distance themselves and then 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 behavior but for those of us caring for a child with special needs/ disabilities this is unfortunately a common occurrence.

My sister bless her heart happened to text and could probably tell from my replies I wasn’t ok and she simply asked me “if I was ok?” well the flood gates opened and it all came out in a very long, hardly making sense text message. Suffice to say a phone call later and I ended the day feeling much better having talked to someone with no judgement and no pressure.

The outcome is that I am now sitting here waiting to call the GP surgery as what I am feeling at the minute isn’t how I should be feeling and my own mental health has taken a slight tumble. I’m getting emotional at everything, crying and retreating into myself, I can’t read, my concentration is of at the minute, I’m having memory problems, I’m having the weirdest and wackiest of dreams, I’m eating sporadically and I just feel overwhelmed and frightened to death that my Non epileptic attacks are going to start again.

For me these are my warning signs and are when I start to realize I need some 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.

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

First Assessment Day

Having woken early this morning my stomach is rolling around with what feels like a million butterflies – Today is the day of the educational psychology assessment which we have booked and privately funded. We also recently spoke to the GP regarding a referral to CAMHS for expressing “I want to die” and also anxiety levels, and while they agreed to do it they said it would be a very long wait and may be worth looking at other options…..something else we need to look into and figure out.

I am so nervous that it’s possible I’ve been barking up the wrong tree for years and that my daughter after all is just a naughty, spoilt child with no difficulties, just bad parenting and challenging behaviors.

It’s a one way or another kind of day and feels like hours away from battle. So much is going through my mind right now from

.how will she react,

. What will he see

. What has the teacher said in her questionnaires

. Are there signs of Autism or something Neurodevelopmental there?

Last night I literally spent hours going through everything I have. I even found a Home/school communication book from last year which charts how she was at home and while most of it was positive at school they noted on certain days when things changed there were differences in her behavior – omg I’m going crazy it’s like that feeling you get the night before your driving test or the night before an exam

I’m just going round and round in circles while my daughter is currently still in bed. She knows someone is coming into school today, having a teacher of the deaf come once a term she often sees people in school. It’s hard not to when it’s such a small school there’s only 2 classes, it’s how she will react, that’s the interesting part.

Will update the next part of the journey when we have some news but I am staying strong and holding my head up high! Bad parenting pah

Xx Leanne xx

Working and Living Massage Therapy

Having a mum who is a trained massage therapist would be my idea of heaven.

Being a mum who is a massage therapist gives me great satisfaction that not only can I help other people, I can also help my own family and children. Since I first started training in Indian head massage back in 2014 my 4 children have all benefitted from massage. From Head massage to Back, hands and feet, I use massage almost on a daily basis and almost without even realising it. You can find a local therapist and introduce massage as part of your wellbeing, but you do not have to be massage therapist to feel the benefits of massage.

Human beings are by nature touch orientated, we feel safe, comforted, supported and loved with touch. From a simple pat on the back, a hand holding a hand, to unconsciously soothing our sleeping children wth a hand on their backs, curling their hair. Massage makes us feel good, it helps to release feel good endorphins, it calms down our nervous system and in the case of one of my daughters massage really does have an impact on her fight or flight symptoms. For some people massage can also be a treatment that fills in the void of missing out on human contact wether through a bereavement, illness, disability or just through fate.

For my girls, massage is a time to bond, calm and relax. the most common massage move I use is effleurage. This is a lighter, soothing massage move with big unhurried movements which I find work’s best especially with children. Through my work I have found that children do not respond well to deep, hurried movements which they can find both scary and painful. with the effleurage move I tend to find that its an easy one to be mimicked by children and mums and dads often find themselves being given a massage by their child. This is always my favourite part and in its own way shows how much of an impression massage can have on a child with their willingness to naturally share in the touch.

In my general treatments I use effleurage to introduce touch to a client and warm up the muscles prior to deeper massage moves. again I always start with this move to introduce massage to an adult. This is important to new clients or a client who hasn’t had a massage before and therefore is unsure of what to expect. Massage is in my opinion like starting a sports activity, muscles need to be stretched and warmed up before they can be worked properly. Heavy deep movements at the start of the massage, before you have warmed up the muscles would not only make the client uncomfortable, it would be uncomfortable for the client, it can restrict circulation. Tense, painful muscles are a lot harder to work on.

There are many different types of massage:

. Swedish / Holistic massage

.Reflexology – Feet

. Indian Head Massage

.Reiki

.Aromatherapy

My own children have had Reiki and Reflexology and both have loved the treatments. With reflexology my youngest lays watching on her iPad and actually sits still for the treatment. Its amazing and its also one of the least invasive of treatments for children as all they have to do is take of their shoes and socks – this is defiantly something I am looking at training in next.

Another treatment that I love is Story Massage.

Story massage is an amazing blend of stories / songs / rhymes or even when your desperate a shopping list. you learn 10 massage moves that are so simple and easy to master that I’ve had children as young as 2 years old pick up the moves and use story massage on mummies or teddies. My teenagers even now will write a story and put a massage to it….. Did I mention it can be used anywhere? literally in queues, at the cinema, in the car on the bus, at bedtime, at school time, on a rainy day, on the beach. since training in I have used this massage everywhere as a parent.

Find out more on story massage next time – follow the blog

xx leanne xx

Autism….The Start of a Journey

For a while now I have felt that there are symptoms of Autism present in my two youngest daughters. From small clues such as struggling with changes in routines to how they react and behave in social situations. For a long time I have questioned if I am seeing things especially having done some training on Autism to better aid me working with children with special needs in my career as a Massage therapist.

Throughout the last couple of years its been becoming more apparent that there is something underlying my children’s behaviour and I am now at the point where I am totally fed up with the diagnosis of “parenting skills” “bad behaviour” “learnt behaviour”. With a service which is under funded, understaffed and with more and more children and young people facing challenges on a daily basis I along with so many other parents, are up against it.

We have one child who was diagnosed in 2013 with ADD, a diagnosis which I feel was misdiagnosed. I don’t feel that the social communication skills were properly looked into and that it was easier at the time to diagnose ADD than it was to spend time assessing for Autism. Now I am now specialist, I am not clinically trained and because of that I have been left feeling as though I am barking up the Wrong tree, but am I?

  • Both girls struggle with changes in routine, even if that change is days before the actual event
  • If we go to a new place the girls become disorientated, confused and frustrated
  • dislike of certain foods, they tend to eat the same thing and do not like to try new things
  • they tend to avoid eye contact with friends family and people they do not know
  • they tend to have one friend but can struggle if they are in a large group of people, E tends to back of from social gatherings and retreats to one side or to another room
  • social gatherings with family can be difficult for them both, they both tend to mask around family and friends unless they are tired or stressed, this lately means that family are seeing this more and more
  • both girls are black and white in the way they think. if you say your going to do something then you should do it there and then
  • They both tend to repeat themselves and ask the same question over and over again
  • meltdowns when shopping are a regular feature so much so that they now have headphones while we are out and we have to go out very early to miss the busy times. They also struggle when they wish to buy something and get overwhelmed with the choice available.

Living and raising four children, I’m of the opinion that if my parenting skills were to blame then surely all my girls would all be the same wouldn’t they? I have brought them all up the same way and they have also been brought up with close cousins of the same age and with parents who parent the same way I do. It drives me mad, I question myself everyday about if I am good enough to be a mum.

Me

I feel that the worst part of all this is that they are both girls. Girls historically “mask”where they try to fit in with those around them making for difficulties when it comes to getting an acceptance for assessments as the criteria is that Autism symptoms must be present in two environments. sadly for school age children this is home and school. My youngest when she has come home and had a meltdown will afterwards tell me that there was something that happened in school such as a test or piece of writing and that even though she tried her hardest she felt she couldn’t do it, that she was rubbish but in school no one is aware as she has tried her best and held in how she is feeling. School have seen on a daily basis with the youngest the struggle I have to get her into school. I feel she has attachment issues and this I use to my advantage as it means that even if all the way to school she is saying she’s not going, she will still follow me all the way into school.

Having my youngest recently not accepted by the NHS to be put forward for assessments due to a lack of evidence from school I have decided to start the ball rolling and find out one way or the other if its my parenting, imagination or what ever else the “specialists” want to call it. We are paying for a Educational Psychologist to come in and assess our youngest. Am feeling trepidation, anxious and so so scared. One way or another this journey will start or finish with the report and the recommendations and as a parent I feel sick to my stomach because letting in the doubt what if it is my parenting skills……….

Please do feel free to follow our journey, comment, send me your stories and experiences. Together we are stronger

xx Leanne xx

Feeling like a Phoenix Rising from the Ashes…..

Setting out on my path of motherhood back in 2003, I never imagined that I would become mother, teacher, carer, advocate and a vessel for my children to take out their frustrations of the world on. With changes in laws, diagnosis processes becoming long and drawn out, mental health care sadly lacking and the never ending feeling that you are an obsessive over reactive parent has never felt more apparent than it does at the minute.

Juggling life with three teenagers one of whom is about to take GCSE’s, and a primary school child has been hectic to say the least. Factor in Disabilities of Sensori Neaural hearing loss, ADD, and possible ASD and life has suddenly seemed to be an endless array of appointments, meetings, activities, work, research and trying to stay sane.

One thing I have learnt though on this journey, is self discovery, the love of friends and family and that no matter what guidelines state, what boxes specialists like to stick us in, I have done and will continue to do the best that I can for my children. I research, I educate myself, I try and support those who are in the same boat, and its not easy. With so many other parents facing the same difficulties, the same barriers and the same never ending job of caring for our children.

We currently have two children, one who was diagnosed ADD in 2013 but in march 2019 was accepted for assessments for ASD by the NHS – so far no contact, no EHCP as she was deemed not bad enough. The second daughter who was refused by NHS for assessment on the grounds that there wasn’t enough school based evidence, which there probably isn’t as she Mask’s in school and at home, but they get glimpses when she refuses to go in at the start of the day and when she comes out and storms past me. I am so convinced I am not a bad mother that I have set aside the money to go privately for an Educational Psychology report. Is this the way forward?

Photo by maitree rimthong on Pexels.com

This is just the next step in a long journey for me. After learning my lesson with my eldest who at 9 months old wasn’t babbling or making sounds, the health visitor asked for her hearing to be checked. A Paediatrician came out and did a test on my daughter. After 2 minutes he said it was normal as a first time mum to be worried, anxious and that I would do better to stop being over reactive. Well being 19 years old I was suitably chastised and apologised for wasting his time – fast forward 4 years and screening tests showed my third daughter had been born with a hearing loss. The Audiology department tested all of our hearing and my heart literally broke when they announced that my eldest also had the same Hearing loss. The moral of this story is that no matter what trust your instincts and ask for a second opinion as no one in infallible, not even doctors.

I am feeling more and more like a phoenix that rises from the ashes each and every day after each step back, each set back, each difficult day, once more to carry on and raise my children in a society that is still even now judgemental and where those that are suppose to give help and support and advice are as over worked and pressured as I am tired both physically and emotionally.

With so many parents struggling through their shared stories and views its evident there is an issue with getting the care that we need for our children and that parents are being blamed for their parenting skills TO YOU I SAY don’t give up, we are all the same striving to fight for our children rights and to give them the care that they need and entitled to……..ONE day there will be change

XX leanneXX

The back to school build up

Have you had enough yet?

I know I have…..I’m Bored mummy, Your stupid Mummy, We never do anything Mum, Why can’t we go out Mum, Mum, Mum, Mum

Some days I really wish I could change my name to something that would make me belly laugh every time they say it. THE 6 WEEKS SUMMER HOLIDAY is bad enough for any sane person, we spend more money, we have to fit in work and when ever I go to get something to eat the locusts have visited. Even aged 9, 13,14, and 15 my lot still have a hard time amusing themselves. I don’t know why? I remember going out on my bike for hours with friends, climbing trees, maybe getting up to mischief (it was the 90’s) my lot would rather wait for me to tell them or rather shout at them to do something so they can shout back its boring, or they want to do something else ARGH

My girls like routine, they like to know in advance what we are doing, where we are going, for how long and who is going. Its exhausting when its a school week and most of the effort is concentrated on getting them to school. With the summer holidays its ike a free pass for my girls to morph into whinging robots that repeat themselves like a stuck record. I suppose I may be luckier than some as there are only literally 8 days left to go before the start of the new term, not that I am counting down or anything……….

To tell the truth I love the idea of having my girls home for 6 weeks. No school run, pack lunches, shirt ironing for a whole 6 weeks, we can go out, stay in, chill but the shine soon rubs of as I realise very quickly that unless I have a full itinerary to rival the best travel reps I am going to fail miserably and descend into a midst of parent despair. For those parenting children with Autism, ADD,ADHD and other Neuro-developmental disabilities the chaos of no routine soon becomes apparent. Even me, I find I can not cope with the ‘No routine’ I feel like a lost puppy waiting for instructions.

Saying that we have had some lovely days out, planned in advance, weather checked, food sorted, money sorted. Days at museum’s, Sea life centre (aged 9 and 13 they have sadly now outgrown), 2p machines, Beach, swimming, camping ect ect

I feel like I should be sad that summer holidays is nearly over and that they will go back to school soon but to be honest….. NO I AM NOT, Why? well the last few days start to drag, they don’t start back till nearly the end of the damn week which just causes even more confusion as like L says school should start on a Monday and I am bloody fed up with the I’ll need this, This don’t fit me, Can I have this, I need a million pens, I need a new bag cause this one is mouldy, I don’t like my school, I don’t want to go to school.

The build up to school is a bloody nightmare for all parents, wether its the cost, the planning, new schools, Good luck to you all See you on the other side 🙂