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.
I’ve been doing this positive parenting course for children with additional needs and disabilities. It’s almost over and I’m not ready for it to be over. I’ve had 3 course sessions but it’s only been one where I felt like I was getting somewhere.
I wanna access more help, I feel like I need more help. Maybe I don’t maybe it’s just that I have zero confidence in my ability. I’m suppose to be getting a call tomorrow as it’s one of the telephone sessions where they check how things are going, if you need any advice or need to ask any questions. Then in a couple of weeks and one last session that’s it I’m done. Back to where I started with a text book to look through.
I’m getting nowhere. I have a paediatrician’s appointment for my eldest in just over a week. I hope it’s to finally get a diagnosis of autism or Asperger’s. I need to know for definite so then I can start getting proper help. It’s half term this week and I’m starting to struggle already. It’s such hard work trying to keep him entertained all day every day. I take him out and he wants stuff all the time, I say no it causes issues. I’m tired and I wanna spend time with him it’s just draining with all the questions, him getting upset because his Lego car broke and he gets “lonely” when he plays on his own.
I still have housework to do and I’m not getting things done because he debsvds attention and then the little one plays up. I try to talk to my husband and I get interrupted because he wants his dads attention and wants a playmate.
I’m tired, I’m anxious waiting for the next meltdown or the next thing to upset him and then I have to get to him to calm him down even when his dad is there. Then I have to do the little ones physio and I can’t because I’m doing everything else. I’m on my own with no-one to call on for help.
One of the things I’d never normally describe myself as is a drama queen. But tonight I feel completely stupid and feel like I’ve been a drama queen.
I took my little one to see a nurse on Saturday evening because I think he’s unwell. Classic signs of yet another ear infection. They agree that his ears are inflamed but they wouldn’t treat it there and then. Had I taken him to the gp surgery knowing his medical history they would have treated him with antibiotics straight away. Yesterday he was still off it not his usual chirpy self. This morning though I thought he had brightened up a bit. But he hasn’t. He fell asleep on me after lots of tears at playgroup he slept for around 45 mins. It’s not like him. Then at around 1:30pm he started getting grumpy again ready for another sleep. He usually has one half an hour sleep but he’s been extra sleepy and clingy abs grumpy. I got him in the bath early tonight and maybe it’s anxiety but I swore he looked blue around his mouth. Maybe I’m over thinking it maybe I’m paranoid trying to find an explanation for the sleepiness. I took some pics and sent them to my friend. That’s when I felt like a prize twat. I just needed someone’s opinion of someone to say he looks fine. I’m not normally this dramatic but he’s not well and I feel like because I’ve had depression people don’t believe me. I take him to see the nurse when he’s ill and she treated me when I was at my lowest so I feel like I’m being judged every time I take him. 95% of the time he’s been poorly in the last almost 18 months there’s only been 2 occasions where I was wrong. It’s like they think I’m making it up or purposely hurting him. I would never ever ever do that to my kids and I would never use my kids for attention.
I’m sat here feeling down, feeling tired and worn out. I feel incredibly alone and like I’m an idiot for over thinking. I’d been doing so well there’s just so much going on. I knew it wouldn’t last so now I’m disappointed in myself and being too hard on myself.
My anxiety has been causing havoc this week it’s drained the energy out of me and caused arguments. The 9th September is quite a significant day in my life since last year it’s the date things went terribly wrong for my littlest boy.
A year ago on this day started off normally like any other day I got the boys up and dressed, took the oldest to school he’d only been there 10 days. I met my volunteer and went to a baby group with the youngest and came home and my health visitor came to weigh him everything normal. No issues. Picked my oldest up from school and took him to his friends house for tea and the community nurse was due to visit at 4. She was late and turned up at 4:30 at 5 my eldest returned home and 5:15 my husband returns home from work. The nurse is checking the oxygen saturationssbd used two different machines as it wasn’t reading well. He was to be no lower then 85% he was reading at 74% so that was it before I knew it she was dialling 999 from her mobile explaining the situation. I’m in tears on the phone to my mum then I phone my sister and my grandad. I’m in floods of tears panicking. How is this happening I’m told its precaution and nothing to worry about. They will check hin over and he will be home. The ambulance crew turn up and we are blue lighted to hospital. I cried the whole way there I’ve never travelled so fast before. We got admitted to triage then on to the children’s ward. If his sats stay above 90% overnight we can go home. They did for the majority of the night but around 3am he was unsettled and kept kicking the probe off his foot. But it was classed as a low reading so we had to be transferred to the specialist hospital. I had no clothes with me, no nappies, no formula. I had a phone charger, a cardigan for my youngest and my purse. No food, no water, nothing, no hairbrush I had nothing. Yet we were being transferred to a hospital 60 miles away. I missed my eldest bless him he didn’t have a clue why his baby brother was carted off in an ambulance. I wanted to take my baby and run and come home. This wasn’t suppose to happen.
A year later this is all still fresh in my mind and despite the date I went ahead with a therapy session. Stupidly should have cancelled it because today was also the youngest boys first day at nursery so anxiety kicked me big time. I couldn’t go through with the therapy and I couldn’t do what I was asked to do because I was too scared and too tense. I disappointed myself and I’m annoyed with myself. I phoned my support worker but she didn’t answer so I went wandering back into town centre feeling like shit. Feeling like I’ve wasted my time and the therapists time too. All that way for nothing. I got a call back from my support worker and I just broke down in tears overcome with so much emotion and disappointment. I felt shit. Too much going on I was totally alone and I needed someone to talk to. She was that person. There wasn’t anyone else. I can’t open up to people about it so it’s not likes there’s a list of people to call. I’m drained and I’m tired as I barely slept last night. I think I’ve taken on too much but I hate letting people down.
I have had a really bad few days with my eldest son. I know he’s not diagnosed yet but having an “autistic” child is mentally draining especially when there are other things on my mind.
Today has been horrendous and I feel totally wiped out and alone. I need someone but there’s no-one there. My eldest has been having meltdown after meltdown all day from the moment he woke up until the moment he went to bed.
I am trying my hardest to be positive and I’m trying my hardest not to let my depression affect him. I try everyday to calm him down when he’s on one but I’m failing. Even when my husband is home I’m still alone he spends like an hour with the kids then it’s night time routine and then they are in bath and bed. He gets angry too easily and starts effin at the boy. Like that’s gonna help. I’ve been on my own with both of the boys for 3 weeks. It’s so hard. I can’t keep struggling alone I need help. I need someone to help me. I need someone to talk to when I can’t cope. It’s day after day of endless struggle feeling like I’m being watched all the time. People judging me.
Physio turned up today at the drop in I go to on a Monday morning this just fueled my anxiety and my ability to cope. No warning no preparation. Everyone watching me as these two women turn up and start moving my youngest around and getting him to stand and announcing to the room how well I’ve done. I was ready for crying. It’s the last thing I needed which is why I cancelled her coming.
I lost it tonight I just broke down in tears. I plaster on the fake smile and pretend I’m dealing with things the truth is I’m a mess. I’m alone, I’m scared of feeling the way I do. I’m lost, I’m alone and I’m cracking under pressure. Tonight I actually thought about what it would be like to hurt myself to see if I would feel better. I haven’t done but the scary thing is I thought about it.
I have counselling tomorrow providing it’s not cancelled and I’m scared of dealing with my past. I’m crying. I’m alone I don’t want to be. I need someone…. Anyone.