Autism poem

This morning I cried. This morning I put my head in my hand, and let the tears fall. 
I’m not grieving. 

I haven’t been seriously hurt. 

I don’t feel unloved. 

Or any other obvious reasons to weap. 

I cried because I’m tired. 

No not just tired, it’s way beyond that. 

My body is screaming at me. 

I feel like my body is shutting down bit by bit. 

Tiredness so severe it hurts. 

I’m 10 years into this life, as a parent to a disabled child. 
I’m 2 weeks into the summer holidays. And my body is failing me. 

Imagine running for hours and hours every day of your life, even when you need to stop because your legs are weak, but you can’t. 
You do it day after day, year after year. 

Then a period of time comes (7 weeks long ) when you have to run 20 hours a day on your already weak leg’s , you push and push because you can’t afford to stop. 

Being a parent to a disabled child is running from eyes open to eyes closed, and some in between. 
We can’t just ” get a good night sleep and feel better in the morning ” 
We can’t have a pj and movie day to rest.We can only push and push. ‘ come on body, we can do this ‘ I cry.
I saw this on Facebook just an insight to special needs mums lives. 


Reading back through some of my blog posts at the end of last year I realise how much of a dark place I was in. Reading the things that went through my mind on a daily basis. We’re almost 8 months into this year and already things have dramatically improved for me. 

By the end of April I got my wish of being depression and anxiety free after I got through counselling, I got my eldest son’s autism diagnosis. I re connected with my mum and younger sister. I think once my thought pattern changed, I realised I was never going to change them. If I was never going to change them why bother trying? I made more effort and in turn they did too. They accepted my children are different and made more effort with them too. I see them on a weekly basis now, there’s more communication between us. 

My life has improved no end since April. Hearing the news I had waited 2 years for finally freed me from the weight of feeling so shit. I love how my life is and it’s not perfect it’s still hard work but I don’t hate my life. I don’t think about clothes 3 days in advance. I don’t hold back on what I say anymore afraid of hurting people’s feelings or them not liking me anymore. 

Things are heading in the right direction. I’m starting to understand my children more. My 6 year old with his needs and wants and how he has to do things his way, I’m teaching my youngest son makaton, he’s copying things we do when we teach him. He started walking 3 weeks ago and he’s got such a funny character to him. 

Life is what you make it, you can cry, kick and scream that you haven’t got perfectly healthy “normal” children or you can grab life by the bollox and say I’m doing a bloody good job at raising my children each with their own individual extra needs. Things can only go forward from here. No more looking back. ✌🏻

Not sorry

Going back a few posts I mentioned awhile ago I’d made a new friend. She went to the same open door sessions I went to. Many times she came in went into the office and came out in tears. I felt for her she looked like she was having it rough. I reached out to her. Mentally I was in an ok place I needed something to keep my mind busy and reaching out to this person did that. I invited her out for lunch with my and the ladies. I paid she said she had no money I wanted to do something to help. 

We got quite friendly i wouldn’t ever say close but friendly. She’s a nice girl but she has had a lot of issues and trauma in the past. She’s not the only one. There was something about her that kept saying to me she needed someone to talk to. I quickly became that person. I didn’t mind at first but the more drama that happened around her the more difficult it became. Last weekend she had yet more drama police she social services turning up at her door (not for the first time)

It was then I confided in a very close friend that it was becoming too much. Too over bearing. She called 10 times a day, messaged me in between. I have 2 children I don’t have time for this. So wether I was in the wrong or not I backed off. Maybe I should have spoken to her. I didn’t ignore her but I distanced myself. It was the start of the 6 weeks holidays and my children had to come first. I had to distance myself for the sake of my children and my mental health. For that I’m not going to apologise. 

However it seemed that me saying I’d been busy didn’t go down too well and she majorly kicked off. I took screen shots of all the conversations so nothing I said could be twisted. Well she decided that everything I said she would twist for attention. I realise now she’s probably done this many times before. She has a mental illness, I presume her mental illness combined with her past makes her thrive off the attention people give her. “I said her daughter deserves to be in care” “I threatened to phone social services up so her child would be taken away” all of it being bullshit. 

It hurt that she was slagging me off calling me fake. Didn’t even have the balls to admit it was aimed at me. She denied it. I didn’t have to but I chose to help her. I chose to introduce her to my children and her to be in my life. I asked her to watch what she said around my autistic son he copied her and his behaviour changed as soon as she came to my house. I’m telling him off for kicking her and hitting her when he sees her kicking me, I don’t care that she was “having a laugh” he copies her he gets a bollocking how is that fair? She’s not an example to be set to my son. I don’t want my children surrounded by people who bring drama into my life. I need to be around people who understand my children and their needs. 

I have nothing more to do with her now. At first I felt like it was me. I’ve had a fair few people fall out with me recently. No longer will I be the silent one and hold back on what I think. I will say what I think needs to be said. I need to stay strong and be pleased that I’m putting my children first. Not other people and their selfishness and drama. I’m sad I lost a friend but she was sucking life out of me. I feel for her daughter and what kind of life she will have, I fear for the the unborn child being put on a child protection plan. I wish her well in her future I just can’t be part of it. 


I’m trying to think of the best bits of 2016 so I try my hardest so start the new year in a positive frame of mind.

I look back and my mind goes straight to the awful moments of the year. Firstly I expected that I wouldn’t still be fighting off depression and anxiety. Things became worse for me when I opened up a can of worms confiding in someone about something that happened 15 years ago. I thought once I said it and got it out there I’d feel like a weight had been lifted. Temporarily it did, I felt free of it like the secret I’d been keeping locked away had freed me from it. But when march came and I’d found out someone had moved back into my town it went seriously downhill and caused more anxiety then I already had. I had to let other people in on this secret. It’s been pretty hard letting people in on this secret and talking about it and getting support to deal with it. 

The only plus side is the support I have had has been amazing. My friend V has been at the end of every message or video call when I’ve been in tears. We really properly became close again this year. Closer then ever before and she’s classed as my little sister. This girl is a warrior princess or something. Despite her own issues she is there when anyone needs her. Everyone needs a friend like her in their lives. 

This year my youngest boy celebrated his first birthday and his heart Anniversary. My eldest turned 5 and settled into his new class really well and has achieved so many things in school and home. 

I usually make ridiculous New Years resolutions that I never keep. All I want for next year is my children to continue to progress in their own unique ways and hope that this time next year I’m in a much better place with my mental health. I want to free from my demons in 2017. 

So called family 

I’ve been thinking about the support I get and how grateful I am to have it. Maybe if my “family” were more helpful or more supportive maybe I wouldn’t rely on these people so much. 

If I had a half decent support network from my mum and sisters instead if being ignored and pushed out I wouldn’t need to talk to a support worker so much. Not that I’m not grateful she’s there because I’ll br forever grateful to her. She’s saved my life and she’s saved my family. She’s my inspiration. I’d love to in a couple of years time use my experience as needing support to support someone else. 

I sit with tears falling down my face wondering why my family ignore me and cast me aside. Wondering why I’m not good enough for them. Why my boys get ignored? Innocent children also get cast aside in favour of my sister. What did they ever do wrong? I’m only good enough when my mum wants her hair colouring or my dad wants Christmas cards writing. None of them have a clue what I’ve gone through in the past, what I’ve been through with my youngest or the daily struggles I face with depression ptsd and anxiety. What did I ever do to deserve being treated the way I get treated by them? Why can’t I have a loving family? Someone to talk to on tough days? Someone to confide in? My mum to understand what I’ve been through, someone to tell me everything will be ok. I don’t have that. I never will. 

My sisters are my two closest friends D and V. D being my big sister and V my little sister. These girls are my family. They love me for who I am flaws and all, they love my boys for exactly who they are. They support me, listen to me when I need a sounding board and they are honest with me. V gets me I can tell her anything and this means to world to me. I can ask her anything and she’ll tell me the truth even if it’s not what I want to hear. She gets me because she herself has mental health issues so we can bounce off each other and support each other. Without the support and the few close friends I have I’ve no idea where I’d be. I just know it would be a very dark place. 

The boys story

A few weeks ago I was contacted by a charity set up specifically to raise the importance of echos during standard newborn checks after every birth. They wanted to know if I was willing to share my sons story about his heart defect. Although I was a little nervous as I’ve kept his story relatively private (hence the anonymous blog) but if it helps another mum going through what I went through it’s worth it. 

The call came today while the star of the show was asleep. I told his story from start to finish and in honesty I got pretty emotional telling it.  It’s been a long time since I’ve had to tell it from the beginning and had to go into so much detail. 

I got through it and I’m proud of myself. I got his story out there but what’s really frustrating is when I read and share other people’s stories on Facebook no-one bothers to read them. Ignorance is bliss until it’s their child or grandchild (expect in my mothers case) with a heart defect. I really wish I could get people to read these stories and realise what mothers like me have had to live with. Mothers who have lost their babies due to the health professionals failing to diagnosis their babies. It’s heartbreaking for me reading the stories and I lived through similar. 

Save Glenfield
Reading the news today saddens me the NHS ate cutting the heart surgeries at Glenfield hospital in Leicester. I like to keep personal details and names off this blog to keep it anonymous but this called for mentioning.

I’m disgusted and shocked and sad that NHS have come to this decision. My youngest was 4 months old when we first went there. We went to look around the congenital heart centre, speak to the surgeon and look around the ward. It was the first time we met the cardiac liaison nurses. They were all extremely helpful and friendly.
At 5 months my baby had his operation after an emergency admission. We met the surgeon he talked through the procedure and sat with us and talked to us like he has probably hundreds of other scared parents. Nothing was too much trouble to him through he drew diagrams he explained it over and over until we understood. The nurses on ward 30 were so incredibly lovely. A few we saw several times and they took great care of my little one. They told me to go and rest when I was exhausted from staying by his bed. They got me tissues everytime I cried, they say with my baby played with him and told him how beautiful he is.
It was the worst time of my like but I won’t forget the kindness of the nurses and doctors I trusted with the life of my child. It’s not a place I ever want to go back to but that hospital has saved so many lives. I’ve always been told “once a Glenfield baby always a Glenfield baby” I hope it’s true. I hope all Glenfield heart families band together and fight the decision.