The first week in the holidays was hard being on my own 10 hours trying to keep the 2 boys occupied and trying to cope with my eldest son meltdowns and fears of new places. But this last week has been even harder. Having my husband at home I thought things would be easier but they haven’t been.
It’s been no end of tears, tantrums and meltdowns. Last night I lost it I got to the point of no return. I shouted at him despite knowing he hates it. I couldn’t think of any other way to get through to him. Then I broke down in tears in front of him. I have tried and tried to help him, talk to him and reassure him.
It took him an hour to eat 5 things on his plate then complained he was hungry. He wanted the iPad but after several meltdowns coming off it in the last few days we said no. That didn’t go down well. I’ve run out of ideas, I need support at home with him because he’s becoming increasingly difficult. I understand he finds things hard but I can’t get through to him to find out what’s causing it. I know he’s missing school, I know he’s missing the routine but I can’t help those things. He’s always going to have school holidays. I have done all I can.
I’ve had counselling this week which makes it harder. I’m trying my best to keep up with everything and I’m failing. Everyone is saying how well I’m doing but the meds are doing it for me so it’s all untrue. I want to reduce my dose and start weaning off them. I want to see myself how far I’ve come and if I can go on now with life without them. Then and only then can I say that I’ve done well.
I am so incredibly blessed to have 2 beautiful children and I dint very often have a moan about them let alone on social media. Tonight I had a bit of a moan about how hard it is having a child 5 weeks away from turning 2 and him not being able to walk or talk.
He’s got a development delay he’s non verbal and non weight baring. I love my kids with all I have but I’m struggling with his physical demands I hurt my wrist about 6 weeks ago and it’s becoming more painful. Having to fill out 2 lots of DLA forms for both my boys it’s mentally draining.
Having the uncertainty of my eldest boys diagnosis for autism hanging over me still. I just want to be told officially it’s not a difficult request. I want to know 100% that he’s autistic so I know there’s reason for the way he acts. The way he behaves is because he’s autistic rather then is he or isn’t he?!
I feel like I’m trying my best but it’s not good enough. I’m taking my meds and I feel different on them more confident and less anxious but tonight I feel so bad for saying what I have that I’m in tears. I don’t want anyone thinking bad of me for saying it. People don’t know how hard it with both boys. I don’t have family to support me or understand me and how hard it is. I feel alone in this.
A year ago today I started this blog, I started writing to get out there everything that was going on in my head at the time. I told my story of my sons congenital heart defect and my experience of how it all came about. A year later I’ve written hundreds of blog posts and got over a hundred followers.
A lot has happened in a year but one things for certain I didn’t expect to still be upset over my little boys diagnosis. From here I will get counselling and talk about it all and hope to finally come to terms with it and put it all behind me.
I’m still awaiting diagnosis for my eldest sons autism diagnosis and hopefully that will come in the next month or so. My immediate family unit (husband and 2 sons) feels stronger. I feel stable and able to cope better with challenges they bring.
In a year from now I hope to still be writing but about how things have improved and how I hope to use my experience of heart defects, my organisational skills and my ability to overcome this depression to help other families facing difficulty. I hope that I can volunteer for the same charity that provided me with the support I so desperately needed.
So as it’s my blog anniversary I’d like to give you the opportunity to promote your blog in the comments. Share the link to your blog so others can follow you and read what you write. I look forward to maybe even finding new blogs to follow and new followers to my blog.
Last Thursday was my doctors appointment. 5 weeks since I was handed a prescription of anti depressants and sent on my way. It’s not what I wanted and I didn’t take them. I refused I wanted help not a prescription.
I told him I haven’t taken them and that it’s not what I wanted. Everything has been taken out of my control so what I put in my body is under my control, how I’m feeling is under my control. (well actually it’s not)
He was quite understanding and I spoke of my reasons why I hadn’t taken them. Loss of control, not wanting to be stuck on them, fear of not being able to come off them. He tried to reassure me but I’m still not sold. I don’t take medicines unless I really really have to. I like knowing that if I’m having a good day it’s because of me. The only problem is I’m not having that many good days it’s one constant blur of not so great days. My emotions are up and down, anxiety seems to be under some kind of control as I’m trying not to stress over clothing and trying not to plan what I’m wearing. But my mood is very up and down. I’m either ok but tired, emotional and tired, stressed and tired or just tired. No matter how much sleep I get I’m still tired.
I feel like I’m under so much pressure organising hospital appointments and trying to fit them in around school hours. Physio for the youngest, managing the eldests behaviour and trying to help him with his school work, reading books, doing homework and doing his spellings with him. I have various appointments with various different people.
I have to decide if I’m going to take these meds. I’m still struggling with the decision. Do I or don’t I? Will they help ease my mood? Will I have awful side effects? Will they help me stress less and feel like I’m under less pressure? Can I dedicate myself to knowing I’m on them for at least 6 months. What happens in 6 months if I want to come off them?! Too many questions not enough answers.
Today starts my extremely busy week with various different appointments with various different people involved in my youngest son’s care.
We had his physiotherapist come today to see how he’s doing and I’ve got a lot of work to do in the next week to encourage him to start cruising around the furniture. I showed her the few steps he took unaided with his walker but he’s not done it since. Because he fell there’s a chance it’s knocked his conifidence a bit so I’m going to have to try building it back up.
Tomorrow I have our health visitor coming to see us for a support visit. Now I’m not getting the supoort I was getting from my supoort worker I’m finding it hard. I was kind of relying on her to share something with her that I couldn’t say myself but now I either have to do it myself or say nothing at all. Have you ever had a secret that consumes you? Something awful that’s so hard to talk about? And then having that secret for pretty much half of my life and not having the courage to talk about it to just anyone? I have had the support from the outsider charity LRC but it’s coming to an end in like 2 weeks. I honestly don’t know what to do and I only have til tomorrow to decide.
Wednesday I have a lady from the Sen academy she works for our county council and she comes to help with a child with additional needs development and it’s the first time I’m meeting her. So feeling kind of nervous and I have to probably go into his medical history etc unless our health visitor has done that.
Thursday we have a speech and language telephone assessment so I’m hoping my mini monsters will be quiet long enough to take the call and let me speak.
All this and anxiety is raising with each day. God I need a miracle.
Thursday was a pretty bad day. I was very emotional and upset. I didn’t have anyone to talk to but my friend L and I were talking on Facebook messenger and asked if I wanted to meet her Friday morning while my youngest was at toddler group. I would have normally said no but I really wanted company and I agreed.
We ended up spending the whole day together she took me to get my little one from toddler group and the she said she would kidnap us. It was actually really nice and I enjoyed her company. Sat there chatting and watching the kids play. It started the ok couple of days I’d had.
Yesterday after my oldest son lost some Lego under the sofa I decided to change around my entire living room. It looks so much nicer and more spacious now. I was knackered after all that went to bed early and the little one had me up early so I was still tired this morning. Normally on a Sunday I don’t do a great deal but I made cupcakes with my oldest, cleaned out the guinea pig, swept the carpet (because the oldest being autistic he hates the sound of the hoover) then cleaned all the windows, washed my bright pink hair then cleaned up the mess I made in the bathroom, dried and straightened my hair then finally sat down to watch a bit of a film before the youngest boy got tired. So basically I’ve hardly had any time to relax today. Because it’s been so crazy and the youngest boy not going to sleep when he should have it got to my emotions. I got upset over stupid little things, my husband ignored the fact I was stressing at the kids and continued to spend half an hour cooking his own tea while I didn’t even get to eat the crappy pasta snack mug thing I made for mine. So today was crap. Hoping tomorrow will be better.
As much as I love Christmas I’m glad it’s all over. Normality is just beginning to come back. My husband went back to work today and it was just me and the boys.
Even though I slept terribly last night I thought today went well. Took my msejf and the oldest boy for our hair cut and it’s something that he doesn’t particularly enjoy. He doesn’t like sitting still and doesn’t like the mini clippers that use around the hairline. He did well actually and treated him to a cake after.
I handled today on my own really well I thought I would struggle with tiredness and anxiety but I didn’t. My friend L came up to see us and the oldest played really well her older 2 children. Quite pleasantly surprised.
I have one more day at home with both boys then my eldest goes back to school on Thursday. My friend V is coming up to get her hair done and after that I’m going to wash my hair and top up the bright pink colour I did last week so it stays nice and bright. I am looking forward to Thursday but also anxious about going back to open door sessions at HS. I know I won’t have someone to talk things through with which is going to be hard and I know my anxiety will build. I just can’t start to confide in someone else because she’s not discreet and that’s no good to me. I’m a private person I don’t want people knowing my issues in the group.
So all that to consider I don’t know what I’m going to do it’s going to be tough. I actually inboxed a distant friend who is a very religious person and has a strong Christian faith. I have so many unanswered questions that I’ve considered going to church to see if I can find some answers. She’s meeting me next week and she’s going to introduce me to the minister. I’ve always been sceptical of religion but I’m intrigued by it now. I’m more a spiritual believer then religious believer.
Anyway that’s my rambling over for tonight.