Another blow

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.

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Feelings

Some days I don’t really have much to feel in the way of anxiety and depression in this relapse. It’s weird I can go from one night feeling absolutely shockingly shit. I’d be crying, writing over thinking and feeling like I could crawl under a rock and not come out. Then the next day it’s almost as if I didn’t feel that shit, that upset, that bad. Is that normal? Is that how this works or is this what I’ve had to get used to doing and now it just comes naturally that I have to pick myself up and get over it? 

Night times are the worse. I feel stupid because I want to be alone.  I don’t wanna socialise at night once my kids are in bed  but then everything comes pouring out and the tears start to fall and I feel lonely as hell. My husband doesn’t get it he thinks everything can be fixed with a hug. I don’t need outsider support because I have him. I tell him I didn’t sleep well funnily enough neither did he. Even though we don’t share a bed. I co sleep with my 2 year old. I’m happy with my arrangement. I feel like shit guess what he does too. I can’t win whatever I do he has it much worse. 

That outsider support is what I’m missing I need that someone not connected to my family or my personal life to talk to. I need that outsider perspective. Someone who asks me if I’m ok because they are genuinely concerned and wanting to make sure I am. I went to the open door sessions where kids can go and play and have a snack because it was judgement free (most of the time) now more so because there’s more understanding that my 2 year old has tetralogy of fallot and that despite being repaired it’s a life long heart defect. I don’t know what I’m going to do there’s still so much going on I’ve had a mini break from it all a taste of life with hardly any proffesionals involved and now all of a sudden once September gets here it’s all going to start back up again. He’s making great process with speech being the exception so I don’t know why I’m so worried.

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 

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. ✌🏻

Jinx 

I hope I don’t jinx myself by saying this but lately things seem to be good. I seem to be in a good place. Dare I say I feel normal. So bloody forgetful but normal, I feel good. 

Both my boys are sleeping well the youngest is sleeping through most nights I think his exercises and the fact my eldest is relatively settled aswell are helping. My eldest has responded well to alarms being set for certain things so he’s settled. No meltdowns for a week which is damn good going. He did amazingly well at sports day, I told him to to try his best. I’d be proud of him if he won or lost. He came 2nd in 2 out of 4 races. His school report was glowing he is expected in all targets except reading in which he’s exceeding. One very proud mum here.

I have counselling next week which will be hard but I’m hoping that I can have a day or two then move on again another step to getting life back. To stop feeling anxious around town. I need to feel strong I need to do this and it’s time so as much as I don’t want to go over things o know it’s for the good. 

Summer holidays also start next week feeling a little anxious but luckily I have a week away at my in laws coming up the second week of hols. That will break up the holidays give me a bit of a break away from my home town. I have trips planned for our family and I’m looking forward to them. With the support I have I think there’s a chance I’ll get through the 6 weeks. I feel like I’m betraying someone but I’ve been allocated a new volunteer support worker. Someone extra to hell through the holidays. Support for me in dealing with meltdowns and someone for my eldest to chat to as she has worked with autistic children before. She’s going to be a big help to us. I hope I can build up the relationship with her like I did J. She was lovely and helped no end. But I don’t think she’s coming back so I had to make the decision to get someone else.

For the first time in a long time I feel more positive then negative I need to work on the negative still but I’m getting there….. Finally. 

Appreciation 


Today did not go as I thought it would. My eldest had a massive meltdown this morning over a toy. Not his toy but my cousins sons toy because he wasn’t sharing it with him. That started a massive meltdown then I just started crying. I got upset, the meltdown continued on the school play ground I just felt like everyone was staring at me. They probably weren’t no was just paranoid I guess. I caught his teacher after the kids went into class and I just broke down in front of her. Afterwards I felt like a right twat. Crying in front of her the one thing I didn’t want to do. Well done me! His teacher was very understanding, she’s lovely she’s very good with my eldest. I explained what had gone on and she said she would do some work with him. 

Despite it being nearly 9pm she replied to a message I sent her earlier this evening on class dojo. And continued to reply and tell me what was discussed at school. That is dedication, that is caring and considerate and going above and beyond to help out one stressed out mummy and one very anxious little boy. It turns out he was worried about going into year one today for class swap. We had tears st bathtime crying cause he’s going to miss his classroom and his teacher. Bless him so much change for him. 

The picture below is extremely accurate for me.


My youngest now has chicken pox as well as yet another ear infection. So I now have that to deal with meaning no groups, no playing no support no company. It’s my birthday on Tuesday and my youngest was also suppose to be having physio at group on Tuesday. I guess I’ll be cancelling that then. Instead I’ll probably be spending the day completely alone. 😣😕😢 every few weeks my littlest boy picks up an infection. I can’t get a break its one thing after another. I need a break from doctors and illnesses and medication. 

Stressed

There has been so much going on lately with different appointments and meetings and other things that it’s just all getting too much. It’s getting harder to handle it and I’m so stressed I’m snapping at the kids, the husband and I’m not very nice to be around. 

Tuesday is getting ever closer and in between that I have 1 or 2 meetings with school for my eldest. Anxiety is kicking in big time so much that I’ve not eaten a great deal all day. Half a sandwich that’s it. First time in months I’ve skipped a meal due to not wanting to eat. 

Last night me and my husband went out for a meal and I really enjoyed it wasn’t overly anxious but the anxiety was still there. Leaving the kids, what I was wearing, how I looked, other people dressed really causally I was dressed up. I felt kind of out of place. 

Think it’s all been too much at once. I need time to get my head in gear and prepare for Tuesday and also meeting my sons teacher for next year. I think it’s been too much for him he’s over stimulated and routine has been different for 2 days and it’s affecting him too. He’s having more meltdowns he’s not eaten much again either. I finally get things settled down and I uproot it again. 

I wonder how my kids will remember me when they grow up and think about their childhood. Will they remember any of the good times? The times I’ve made them laugh or smile by dancing around the room with them or the times I’ve wiped their tears when they were sad, upset or scared. Or will they remember the mum that shouted at them when she was stressed or having a bad day? I don’t want to create unhappy memories for my children but I can’t figure a way of dealing with some stuff.