Loneliness….. now for a mum of five this must sound crackers right? Sometimes I feel tremendously lonely in life even though I am constantly with someone. You see I think if you don’t have people around you that enjoy similar things, or identify with what you might be going through soon life can become a little flat. People smile and ask how you are and as social creatures you respond with a nod and a smile followed with a “not bad ..you?”
How do you think that conversation might go if in fact you actually answered that question how are you? With an unbelievable raw truth.
I’m not sure how many people would actually take the time.
I have but a few people I can go to and to be honest I don’t blame people I wouldn’t know what to say if I were talking to me either.
Earlier today I was having a lovely psychological conversation with my eldest daughter’s,regarding people’s personalities and why they behave the way they do. One said “you can tell they always try fix people’s problems because they aren’t getting fixed or supported at home.”
She also said she likes how we talk and that we don’t fix problems by throwing money at it.
Well there it was right out of my daughter’s mouth even though we was talking about a teenage girl, the words rang true for me, I am that person always there trying to fix it jumping in nurturing anyone that walks through the door.
I know why I do it,I don’t need a psychologist for this one. However knowing where the loneliness and abandoment comes from doesn’t help solve it. I still at the age of thirty seven long to have somebody support and encourage me, and say wow do you know what you are doing fab. Even actually ask how are you and actually mean they are willing to get that answer.
Now am I aware this sounds like a pitty party and do you know what it might just be that! It really actually probably is…….however recent events have brought up so much underlying stuff.
By now those that read my blog and family and friends will know a brief overview of my family life, but for those that don’t here it comes ……” feel free to scroll past”
I have five children my eldest daughter charlotte has always been difficult and had oddities but we have put them aside and left her to try and swim alone ….at various points during this time we have tried seek advice and help when she has been really bad,first with suffering with an eating disorder at primary school along with under achieving and being socially awkward,and periods of self harming over the last few years. Now we are actually finally pushing again to have that asd assesment but as many will know this process isn’t easy a file of evidence needs to be compiled before an appointment will be made. So this is child number one basically a rollercoaster that we are always on, add on hypermobility allergy to the cold and chronic asthma you will see lots of Dr appointments and meds.
Child number two is epileptic and to be honest it terrifies me. Firstly seeing your little girl seizing and gasping for every breath for twenty minutes feeling completely helpless is the most horrific feeling in the whole world. To experience this several times over a period of a couple of months not knowing what it was with no medication was a terrible time. Then came the diagnosis and medicine everything was ok for almost 4 years the medicine seemed to be working although at times she seemed odd and not herself I was certain something wasn’t right and possibly she was having abscent seizures. Olivia was anxious a lot so she was referred for CBT to rule out symptoms of anxiety clouding symptoms of epilepsy. She now has anxiety under control with a wellness plan toolkit to help control situations when she may become anxious although we still haven’t managed to get over the fear of lifts yet. This now rules out anxiety for the symptoms Olivia experiences so the time came to take her off the epilepsy medication so we began the reduction over a period of two weeks. At two days with no meds she had an EEG within days we received a phone call “Olivia must ‘re start meds as soon as possible they will be in the hospital pharmacy.” The EEG showed Olivia suffers from temporal lobe seizures and is indeed photosensitive. This is new and different these can be anything from a sudden emotion to standing still we don’t see most of them happen an Indicator that she may have been having them is when she is over tired and has lots of headaches. As a parent I have millions of questions whizzing round especially regarding her future at the age of almost 14 the future begins very soon for her in terms of career and everything. When she goes out like any other teen I always worry and like her to be accompanied which she finds very frustrating .
So far that’s two challenging children are you still with me….. I guess your thinking ok where is she going with this, “well keep on I’m getting there”
Child number three our lovely Josh well he’s now 12 and he was finally diagnosed ASD ( autistic spectrum disdorder) at the age of 9 after a five year battle. Josh appears as an average child he learnt how to respond to people in the simpilest form with as little eye contact as possible. He always maintained a reasonable educational level, infact higher than most with least participation during primary.
At home however he was a mess aggressive demand avoident distressed and at times suicidal. We had the biggest and hardest fight having to go out of county direct to a community paeditrician. Once in the assesment within a few minutes I got a nod and that was it recognition……. five years to get an assesment and a few minutes of actual testing to get the diagnosis. Why is it so blumin difficult? Life with Josh has been fraught and difficult he couldn’t cope at mainstream comprehensive so we took the option to home educate before he did something he would regret he was labelled lazy and difficult however it was more the sensory struggles and need to stim and his struggle with demand….so The decissions was made and so far besides sacrificing my own personal time it was the right choice his anxieties are lower. We are finding ways to help him learn how to survive when he’s older focussing on life skills.
Child number four sweet curly haired Elysa-mai she is lovely but like Charlotte is asthmatic and we are certain is hypedmobile but we still need to go speak to the docs regarding this but she can bend everything everywhere. Now nine she cracks on but her personality resembles that of tigger from Winnie the pooh, she does not keep still…..has very poor vestibular balance ……..yes alarm bells are ringing for sure! she is also a little socially awkward too. For now she’s muddling along so we will watch and wait and enjoy her niavity.
Child number five the last of the bunch. Pregnancy was horrific, I fell on the patio and then developed pelvic girdle pain or SPD, I was on crutches in chronic pain from 17 weeks pregnant this was following a bleed at 10 weeks, 12 weeks and 17 weeks. Labour was hell I had a home birth with no extra pain relief however unfortunately he presented shoulder sideways resulting In the midwife ripping me apart to drag him out. The placenta took over 45 minutes to separate so it was all a little hairy. William really struggled to latch and was so grizzly he just wouldn’t be put down he was so distressed all the time . I thought alsorts over the course of 2 years I tried everything to make life easier I started using a baby sling because he wanted to be close all the time as he grew he didn’t engage with others he would scream blue murder he had bowl issues, severe eczema once he went onto part formula feeds at 12 months it became clear too much lactose was bad for him. Once he started walking we noticed he would walk on his knuckles now this wasn’t right he still does this at almost five. He got to 2 yeats old and I knew in my heart of hearts he wasn’t quite your average boy. His language skills were echolalia to start and later although amazingly advanced it was very contextual he wouldn’t engage with others at stay and play groups, he would grab a toy hang onto It for dear life and just cry to leave. It started to get picked up on furing his health check scoring terribly for social and emotional and at this point he still had never slept a full night. Not long after at age two and a half I rang the health visitor and broke down. I just couldn’t see how we could continue with the attachment and lining and not knowing was I imagining it and projecting, or was my boy autistic?
The health visitor came out filled in the forms and was amazing she was supportive and listened. At that point I broke down and sobbed…..she believed me! You see I’ve always had a lot of ” you just want something to be wrong with the kids” or they’re just kids look he’s fine he’s so beautiful the same with Josh ” he’s just a boy”
Long story short an early help was put in place at about 3 by this point I had placed him in a few sessions at a lovely pre school. It took him a while to settle most days he had to be taken crying but I knew he was fine when I left.
At the same time as all this happened we were attending a scip course which was for parents and professionals of children with ASD for Josh. We got to know the professionals well, these were the people carrying out Williams assesment. He had 4 sessions at the CDC ( child development centre) along with 2 other families they played had snack ……..although as William doesn’t trust food in other places he did not partake……then one session they have the assesment which is a few tasks with the psychologist and student this is known as an ados. I was hoping and praying the psychologist could see what I could see which was all the less obvious symptoms and sensory issues Bill has. I think for me the most interesting results were how visually perceptive William is,he was so quick with speech and language tests showing he is more than able with talking he just choses in situations not to speak.
When the results day came I was ready for an argument thinking I’d have to appeal, although I knew it wasn’t often a child under five as able as William would get diagnosed, normally they are placed on watchful waiting. The practitioners said they sat and discussed William at great length before making their disicion. It was Williams need to control his surroundings in order for him to be comfortable enough to thrive and be. He was indeed diagnosed with moderate to severe autistic symptoms putting him on the autistic spectrum along with sensory processing disorder although this county doesn’t formally diagnose sensory processing dissorder it is still tested and noted as part of his diagnosis.
Well I just burst out into tears was it really that simple I couldn’t believe it just over a year from start to finish to diagnosis no struggles just meetings with friendly supportive people.
Now are you still with me it’s a lot I know……so William has his complexities he has hypermobility and has to wear prescribed piedro boots to control the roll in his ankle, these are great though you wouldn’t tell they are very swish. Our boy also unfortunately has a condition which means he doesn’t concentrate his urine so he wees through numerous nappies a night along with going through onto his bed,Our bed and so on hopefully when he’s five he can the medication needed. He has great bladder control through the day and is dry in pants. we now have the support if the learning disability nurse. The move to infant school has been amazingly smooth they are so inclusive to Williams needs and they allow him to use his ear defenders all day if he wishes. This is such a contrast situation to Joshuas experiences through school,it releaves so much pressure having that support in place.
What it doesn’t do is help with how hard life is due to how demanding willians need to be in control is.He still doesn’t sleep through the night, I am so tired it’s hard to explain.
I know I have dribbled on a lot there,believe me when i say that was the quick overview.
My job as a full time mum is just that. However I am a carer too and I think sometimes people forget the childrens disabilties because they are not visually obvious. They see me as a stay at home mum that does nothing. This is where the above information comes in …..each and every one of my children require medical interventions that means lots of appointments with doctors, consultants, early help,school, health visitors and more. Now try scheduling them in plus all the school meetings parents evening and stuff that give children have anyway along with cadets twice week and weekend activities.
Now throw in daily meds and remembering to collect all the different prescriptions,Charlotte takes allergy meds and inhalers and rescue meds quite often through the year it’s important we act quickly if he her peak flow drops. Ontop of all this I am a student trying to find time to educate myself, to ensure I don’t loose myself taking numerous online courses including level 3 supporting teaching and learning, life coaching and most recent refloxology and palmistry.
My time is also spent on my allotments and doing a YouTube channel. This I do for me, along with sharing the knowledge and produce with others it makes me feel good emotionally and creatively unfortunately having never recovered from the SPD it agrovates my back.
This leads on to me and the physical pain I am in daily. It is unexplainable sacroiliac dysfunction along with a bulging disc causes me agony. The nerves in my leg are always inflamed the best way to describe it is severe tooth ache but down the front of my legs and all around my pelvis, my hip rubs bone on bone at the socket when the joint is unstable and a bad day I wake up feeling like my entire pelvis has shattered it takes me a long time to force myself to walk. A good day is waking up stiff and sore. There is no great days and no pain free days anymore.
Despite all this I still make a point of showing up I get the kids up and ready for school each day I am a 24/7 mum along with being there for those that need it……. can you see where I’m heading with this now.
Throughout my entire adult life and most of my childhood I have felt a lack of that maternal support that most of us girls crave.
Some people say I should be greatful I wasn’t brought up in poverty.I wasn’t physically abused but oh boy the lack of an emotional loving relationship hurts and goes deep.
The entire lack of emotional support whilst raising children with additional needs just myself and my husband without any help is damn hard, it is hard to get over this lack of presence.
My husband is in the armed forces and for a large period of Williams first 2 years he was flying in and out of war zones living away only home for 2 days out of 14 whilst I was struggling to cope with everything on my own from managing the house the finances and the kids, along with my physical pain and trying not to worry.
It was the period of my life when I first truly began to feel completely alone.
In times of real emotional and physical pain & distress we hold out our hands and wait and hope for someone to grab you and say .” I got you” but when it doesn’t come …..theres only two choices freefall or flight.
I had to fly but in doing so I had to cut the emotional baggage that weighs me down.
Does this make me a bad person?
I don’t know I dont think so I think it makes me a fighter, I fight for my kids I fight for my marriage and mostly I fight for my soul to stay strong.
The last year I’ve transitioned many ways through connecting to my spiritual soul I’ve tried to heal myself and I was doing so well until this week.
My mother who has been undergoing treatment for cancer (which is all clear for now) has had a mental breakdown.
This is terrible i wouldnf wish it on anybody but who gets the call…. who gets the responsibility of making sure she is looked after.Who has to drop everything and emotionally scoop her up and give …..thats right me and worst still is because of her mental state at the monent for the first period in my thirty seven years of life she is telling me she loves me. I cannot accept this, desperation and being scared I can understand and process but not love.
I understand i sound harsh right now just believe me when I say our relationship is fraught and challenging.
Ill mental health is a disorder and I know why she is normally the way she is and why she has been emotionally detached my entire life…. her childhood is a phychologyst dream to unpick if and when it comes to it, it is so sad and this day and age wouldnt happen support would be available. It does explain a lot and I hope this breakdown will help my mother open the closet to these Skelton and finally deal with them.
Even though I know this as a parent and adult and can rationalise it, I still can’t shake this feeling of loneliness once again.
I feel like why? why should I help ?…….where is my support? …….where was everyone when I was at my darkest days…when I felt there was no way forward……
Then there is the moral side of me can’t leave it I can’t walk away morally I wouldnt leave anyone in this state, especially after losing my brother in law to suicide.
I will always feel there was more we could have done. We should have intervened sooner being aware of his difficulties.
There is so much ignorance Stigma and head bury when it comes to these issues it really frustrates me. This frustration I feel is what drives me to raise above my personal feelings and strive to help my mum get the help she needs.
I won’t lie tho it really hurts it’s a bit like Alice in wonderland, I feel like im getting dragged down the rabbit hole leaving myself at risk and vulnerable what if I can’t get myself back out this time?
Fundamentally I am alone in this tortured torn between moral duty and emotional well-being.
#mentalhealth #loneliness #asd #pa