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.


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. 

Day of meltdowns

Today has been the worst day I’ve had with my 5 year old. The day started so well he’s always an early riser so it was really good that he slept in until after 7. We decided to catch the bus into town so from the moment we got to the bus stop he started acting up. Using coat to clean the shelter windows when we told him several times not to. Got into town itself and the behaviour carried on. It’s like a demon possessed him or something. He’s had meltdown after meltdown all day. I’m losing the will to live today I’ve had it to my limit with him. He was up Thursday night sick from coughing so Friday I couldn’t send him to school so I’m guessing this is backlash from a day off school. He has a chest infection so he’s on antibiotics for a week so the fact he’s poorly as well could be stirring things up. Today has been hell and I’ve barely kept it together. I could have walked out the house tonight and not come back that’s how stressed I’ve been. People don’t see this family don’t see this. They don’t see what I have to contend with when something changes. Whoever thinks parenting is hard they should try parenting an autistic child then they would see how hard it is. 

Adventure land 

I was pretty low last night dreading a day out we had planned with home start. I thought that it was going to be such an awful day but I was proved wrong. My eldest got to sit with his friend S on the coach which is my friend V’s daughter. They chatted away and he was content. Brilliant start I was so pleased. We got to our destination and for a second I thought it was going to kick off, but it didn’t he loved the rides and got excited and wanted to go on more. I felt sick with anxiety all morning waiting for the meltdown. It didn’t happen. He got a little bit restless towards lunch time so we had lunch break and then went back to it.

Honestly I really enjoyed it and so did my boys and friends kids, I got to act like a kid myself and have fun in pedal cars and going on rides and going down slides. I was so proud of how my eldest handled things he had one meltdown all day mainly because there was a long queue for a ride he wanted to go a second time and it was noisy and busy. I can’t blame him for that. I dreaded today but I’m pleased he proved me wrong. 

I’m pleased I had V with me today to walk around with our two eldest children have known each other since babies and my eldest reckons he’s gonna marry S bless him. Having V and her children with us made it easier for me. I’m not sure I could take both children out on my own but we’ll see what happens with the next few trips etc. 

Keeping it together 

I’ve said many times before lack of sleep is my biggest downfall with depression. My youngest at 14 months so still needs to have 2 sleeps a day from anywhere between half an hour at a time to an hour. Yesterday he only slept half an hour all day my wishful thinking was that he would sleep better at bedtime my old I was wrong. He was so unsettled I barely slept. Eventually after many hours of tossing and turning he fell asleep after I gave I. And cuddled him back to sleep. I fell asleep around 2:30 am woken up at 5:15 then fell asleep until 6:34am I was knackered. I was severely sleep deprived and I was irritable. 

I came out my room to find my 5 year old having this massive meltdown over a toy. I blew up at him like some kind of monster. I felt instantly guilty but I was so tired I just didn’t have the energy to fight him and listen to a meltdown at 6:40am. Eventfully it calmed down but put me in crap mood first thing. I just wanted to break down and cry but I kept It together. It’s such hard work sometimes and I try not to tell school too much in fear of them thinking bad of me. They have been so fantastic I just don’t like bothering them they are so busy. This. Owning as a nice surprise to see the whole school do a flash mob to hairspray. Cheered me up and I told his teacher about his meltdown this morning. God only knows what he told them but he’s come home with a Thomas the tank sticker chart and once he has 8 stickers he gets a reward from school. 

Once school was over I had to bribe him to go to Argos as I needed to take my up youngest boys pushchair back. It went well easier then I thought. I thought he would play hell up as he hates change. We got on the way back home and the youngest was sick all down me in the taxi, I got home and tried to clean him and myself up. I got my eldest some tea left it on the oven too long and burnt it. Couldn’t apologise enough to him thinking he’s going to kick off one because his tea is ruined and to my surprise he just said “it’s ok mummy, everyone makes mistakes sometimes”. Bless him maybe I’m too hard on myself I was having a crappy morning and maybe he was too but I didn’t think of him like that I just saw it as yet another meltdown over something daft.