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. ✌🏻
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.
So what started off as a picture of some pasta just started a feed of negative bitchy comments.
I posted this picture of superhero pasta on my Facebook page. My 5 year old who I am waiting to get diagnosed for autism has never got his head around things being the same but different shapes. So we know he likes spaghetti and bolognaise so I bought him some superhero pasta to try. He got very excited about it (which he doesn’t about food) and I made my own bolognaise previously I bought microwave meals for him. He ate a really good portion of it and he was so impressed by the superheroes it kept him interested in the food. So as a result he ate more. A massive step for him and being proud of him I shared the photo.
My sister was the first to comment asking how the pasta tasted any different to normal pasta. Well it doesn’t obviously. It’s the fact he ate the pasta and liked it, it’s the fact he has s very limited diet and I’ve been working my arse off to try and get him to eat more food. It’s just the negativity I’d expect from them and it’s put me on a downer. I’m sick of the shit from my “family.” I’m sick of feeling like I’m on the outside looking in.
I had such an amazing weekend after such a crappy week. I’ve felt so incredibly low in mood all week and I picked up my mood and went out on fancy dress on Friday to the off ice skating rink, I went with my friend L and 2 of her girls. I really enjoyed it. Then last night I went out for a meal and drinks with 2 other friends in fancy dress. I had an awesome time and it was what I needed to pick my mood up. Now it’s taken one stupid comment from someone who should have understood previously being one of his teachers at school.
I hope I can pick my mood up again I don’t want to keep feeling crap. I have a lot on at the moment and I’m trying to find ways of dealing with it and coping.
My eldest started back at school last Thursday after 6 weeks off I expected the worst. To my surprise he actually had a really good few days. He got the most dojo points over thursday and Friday so he got to bring the class teddy bear (Bobby bear) home for the weekend. It was going brilliantly he came out of school yesterday with a big smile saying “no tears today mummy” I was so proud.
Today on the other hand hadn’t gone aswell. The tears I expected on the first day back happened today. He went into school upset and crying. I don’t know what triggered him but something upset him. He came out if school early for his eye test at the hospital, came out happy enough and did well on his eye test.
Got home and he tried a new food so I gave him a certificate for doing so well and he even offered to look after his brother for me while i did some housework. Again it was going great unti he dropped his Lego and it all kicked off again from there. He was angry with me for breaking his Lego. Although it wasn’t my fault he kicked off in spectacular style. No end of crying and hitting himself and shouting.
Just as I thought I’d cracked it and maybe I was getting somewhere with him this curve ball gets thrown at me. As if all this wasn’t enough to deal with my husband comes home from work rolls his eyes at me cause it’s kicked off. Like I’m suppose to stop it happening. He spent less then 2 hours with the kids and he’d had enough of them screaming and crying. Welcome to the fucking club mate I’ve been at all fucking day long. No lunch break no tea break no nothing. Just two mardy screaming kids to contend with.
Going back to last April I was annoyed when my eldest son didn’t get a place in the school he wanted to go to. I ranted on Facebook, I sent off for appeal forms I really wasn’t happy.
At that time I wasn’t talking to my eldest sister and she worked at the school my son got offered a place at. I thought she would signed him out and treat him differently because of our fraught relationship. After learning that a child that my son didn’t like was going to the school he wanted to go to. With all the stress we went through with our youngest at the same time we didn’t want our boy to go to school where this child would make his life hell. We changed our minds about the appeal, we spoke to our son and he was happy with the choice he had made about going to the “purple school.” Turns out of was definitely the right decision to make. They have been nothing short of fantastic including my sister that we wasn’t talking to. She was teaching a different class to what he was in anyway.
The school have been fantastic they got is the referal to a paediatrician to him to be assessed for autism, they have him a tent as his safe space. They pre teach him when things need to change, they listen to any concerns I might have and they really have fantastic communication. His teacher is lovely and she’s very approachable which helps if I have questions I need answering or he’s having a particularly bad day.
I’m proud of how well he’s doing with his school work, he has reached for his work all of his end of reception targets. His imagination and his personal and social development and managing his feelings is be,ow his end of year target. I feel for him but it’s to be expected.
He has so many professionals involved that I hope by end of year one he can improve on that. I won’t lie about my children and make people belive they are perfect and can do no wrong it sets them up to fail. There’s no point in lying making out they are exceeding targets etc might aswell tell the truth and then they room to grow and improve. I love my boys exactly as they are and I’m the first to admit that it’s hard with the individual diagnosis’ they have. It’s the life I’ve been given I can’t change it I just have to try and learn how to cope with it.
Almost all of my posts have been related to my youngest son his heart defect and how I’ve been feeling. This one is slightly different. This is about my eldest child who is at full time school in reception.
I’ve always known my eldest was a bit different in the way he reacted to certain situations he never liked the sound of the Hoover, my hair dryer freaked him out and he never liked noisy children. When he was in nursery the staff told me he was possibly autistic I still dont really know what Autism is, how it comes about or how you deal with it.
All I know is my son is loving and kind and funny and cheeky but he hates noise, he can’t cope in large groups of people, he doesn’t get other children and prefers the company of adults. When he can’t tell us how he’s feeling he gets very frustrated and has a meltdown this could be over something small but to him it’s affecting him. A meltdown could be crying, getting angry, throwing things or hurting himself somehow. He gets very distressed and sometimes I have to admit it’s frustrating and can be annoying.
The most annoying thing is when I don’t know how to help him, how to stop him having a meltdown or how to calm him down when he’s having a meltdown. Sometimes I find distraction helps him other times he needs to go somewhere and be on his own.
In social situations it’s extremely difficult to help him when you feel people’s eyes burning at you. Looking at you, watching you, judging you. Sometimes they talk behind your back, sometimes they laugh and it’s hard and it’s annoying and frustrating for me as an adult when they do that. So when my son is distressed it’s not him being naughty it’s not him being a little shit or a brat. It’s him not being able to cope with his surroundings so he has to have an outburst. It’s his only way of coping when he gets so frustrated and stressed.
I feel like a bad parent sometimes not knowing how to cope with it by getting stressed out and sometimes I’ve angry when he has these outburst or meltdowns. But to be fair to myself I was in a bad place at first myself.
Now I’m having to re learn how to be a mum to him. How to not make the situation worse. To constantly reassure him that I love him and I will help him however I can. It just means I have to have a different kind of support team around me again aswell as my existing support. I need and want to be the best possible mum I can be to him but I need help to do that for him. I want to learn about autism and I want to learn how to help cope in his surroundings and learn how to help him tell me how he’s feeling. I’ll do whatever i can for him and get all the help I can. Ask the right questions and get the right help so he doesn’t miss out on things he can’t cope with.
If anyone reading this can offer any advice I’d be grateful if you could share thoughts on how to cope. How to help, what works what doesn’t.