So I said that the charity that was the main support for me had lost funding so they couldn’t keep going with the sessions i was going to. A friend of mine V went to a counselling session for herself today (same one that I am suppose to be starting in a couple of weeks.) she was told that she can’t be seen anymore because she’s also lost her funding. It comes as yet another blow because I’m changing my son’s nursery day specially to fit around this counselling. I was told it would be every week on a Thursday but turns out it would have been every 6 weeks. But it looks like it’s not gong to go ahead anyway. I was relying on that to make me feel better and get better from this relapse. I was relying on to open up old wounds and get rid of old demons still haunting me, but now I can’t. What the hell will I do now? How am I ever going to feel better? And stop letting my past haunt me? How will I ever be able to talk about it.. I can’t go back to S2c because that will feel like a massive failure on my part. I tried other counselling and I couldn’t do it. I’ve fucked up my only chances to get real help.
I now have this genetics appointment through for 29th September at the hospital we always go to so I don’t have to travel too far. But to be honest it’s not the travelling I’m worried about. It’s the blood tests, the questions, the results, the whole fucking process. It’s not like it’s just one appointment. It might be 3 or 4 or whatever. What if there a genetic problem? I mean come on I’ve got one child with autism and one child with a heart defect it’s gotta be somehow my fault. I created them it’s my doing. My body let my kids down. I won’t have any other children now, i can’t put myself that through any of this again. There’s a possibility my youngest as well as having the heart defect could also be autistic. I can’t deal with it. I just try to pretend everything’s ok. My head is a shed.
Having an autistic child is extremely challenging it will make you question on a daily basis what you do wrong to start a meltdown. It’s tiring, it’s frustrating, it’s draining and upsetting when I don’t know how to help him sometimes. I wanna protect him from the world who judge him because he has a sensory disability. He hates hand dryers and we have to use the disabled toilets so he doesn’t hear the hand dryers. We get stared at for using them because people presume having a disability means a physical disability. He gets overwhelmed when its crowded, he gets overwhelmed at birthday parties. It’s a daily struggle so I can’t cope with two of them being autistic. It’s hard enough with one let alone both.
The youngest with his heart defect is seeing him before his operation struggling to finish his bottles because he got breathless quickly. He constantly fed. He still gained weight but he was always feeding. He wasn’t allowed to cry for long periods of time because he turned blue. Then taking him,down to the theatre and kissing him goodbye for what you think maybe the last time. Waiting for news for the longest 5 hours of my life. Seeing him in picu hooked up to machines breathing for him giving his heart a rest. It’s something you never get over. The struggle didn’t end after surgery it’s not like surgery is a cure it’s just fixes his heart his heart will never be normal he will always have tetralogy of fallot. This is why I will never have more children this is burned into me for life. I can’t take the risk of having another child with a heart defect.
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 yeah as previously mentioned today was suppose to be my birthday officially I’m 32 but I decided I wanted to be 10 again. On Tuesday I’m having a proper 10th birthday party with kids games etc. I chose 10 because living with depression and anxiety means I never know how I’m going to feel when I wake up. Some days I feel “normal” today I was down.
My best friend and I always had this tradition that in our birthdays we would text each other at midnight. When I was pregnant with my eldest I couldn’t keep that tradition going I felt so guilty but since then the tradition has kind of stopped. I woke at 3am no Facebook messages, no texts still by 7am nothing other then from my husband.
My eldest had a massive meltdown over me opening my birthday cards. He wanted to open them I said he could open one but I wanted to do the rest, so he kicked up a massive fuss so it was then I decided I wasn’t going to open my cards at all. My husband caked me a mardy cow so I started having a go at him. Birthday was ruined before it even got to 7am. I came upstairs and sat alone in my bedroom crying. Proper upset crying. I just wanted a bit of understanding for my husband to use his brain. It’s the first birthday I’ve had since the depression diagnosis. This time last year was hard coping alone but the worst hadn’t happened yet. My best friend is in Wales so I wouldn’t see her on my birthday, my family don’t give a crap and I was all set for a good day at family group.
My youngest had physio booked for 2pm I was anxious about that. I was trying to keep it all together. I failed but I wanted someone to understand all this but instead when I had a go at him yet again it was all about him “I have depression, I have no one to talk to blah blah blah” he’s a pill popper for every minor little thing he has to take medication for it. Colds, coughs, headache,Heartburn the list goes on. If he’s depressed why hasn’t he gone to the doctors to get pills? He takes it for everything else why not depression? I however do not take medication unless I really really have to. A few days after having a c section I stopped taking meds as soon as I was home. I was in pain but instead of relying on pills I dealt with it. I don’t take meds for headaches or any minor little thing so that’s why many times I refused anti depressants. When I was told to go to the doctors and be put on meds I was pissed. I reluctantly took them for 13 days then decided I wasn’t going to anymore. Mostly I cope fine. I had rough days especially when my eldest and his meltdowns get to me or when I have counselling. Counselling stirs up old memories I buried deep inside my soul.
Anxiety now that can be the real bitch. That takes some doing to shift sometimes but again mostly I cope. It’s not often now I feel the need to chat to my support worker but I know she’s there when I do. I needed someone today but I felt too stupid considering the reasons for feeling so crap and crying so much. I didn’t say anything.
Physio went well I was dreading it. I honestly thought she was going to say I’d not worked hard enough on the excercises. I saw real progress in my littlest one and I’m glad she saw that too. It kind of made an awful day a little better. I expected the worst and I’m glad it didn’t happen. The littlest one is doing brilliantly and I know to others it won’t seem like a big deal that’s he’s having tummy time and he’s on all 4’s or on his knees but to me that are massive achievements. I’m so proud of him.
I’ve felt crap today I’ve pretty much cried all day but I have my tattoo to look forward to and my nails are getting done and my birthday party at the weekend. I’m going to forget the bad bits of today and move on.
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.