Easter Holidays

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. 

Improvements 

There been quite a change in me for some time now roughly 3 months. I’d say it’s the meds keeping me stable I don’t know. Either way things seem to be going well. 

Relationships with my family haven’t been great for a good few years. I always got upset when they didn’t make an effort but I’ve come to realise that some people don’t have the ability to change. I have learnt to accept them as they are. I see things differently now I always saw them as selfish but maybe he’s not actually the case. Yes it can be annoying that we don’t get help from them with my 2 boys. But at the same time they don’t know how to handle my eldest and they can’t pick up and carry my youngest either. So physically they can’t look after my boys. 

I can laugh and joke about not being the favourite and it’s doesn’t bother me anymore. They stuck up for me when things kicked off with another member of the family. That meant a lot to me. They finally see the person for who she is. 

Elsewhere my mood is stabilised, anxiety virtually non existent. Well except for today. It’s my sons annual check up tomorrow and I feel nervous as hell. It’s the first one in a year. First echo and ecg in a year too. I think everything is ok but I can’t only see the outside I don’t know what’s going on with his heart and it scares me. Once tomorrow is over if it all goes well I can relax again. I don’t like relying on people to look after my eldest because I never know how he’s going to behave what’s going to upset him and I’ll not be there to calm him down if it all kicks off. Everything is flaring up anxiety and I feel sick.

This Saturday is my beautiful youngest boys 2nd Birthday. Almost 2 years since my world crashed down around me. I hope things will be different. I don’t want to be upset from re living the past. I need to look to the future and stop punishing myself and blaming myself for his diagnosis. 

Feeling guilty 

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.  

Blog-aversary

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. 

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. 

Thinking 

After my long blog post saying how down I was i decided I’d talk things through with my support worker. I said everything I needed to. I didn’t feel any better but in a way it helped that I talked things over and said how bad I felt. She always knows exactly what to say in every situation. She’s wonderful at her job, I don’t feel judged by her like I did at first. I still sometimes think they might judge me but I guess that’s depression making me feel like that. 

She understood and said that she understood and she said that I’ve had dips in my mood like this before and always found a way out of it and pick myself up. Somehow this feels different. 

I’ve started up support meetings again recently with an outsider charity for a specific thing. That’s bringing me down making me emotional and opening up old wounds again. I’m battling with getting my eldest boys autism diagnosis (more on that later) I’m battling with getting the physio done for my youngest boy and  I’m battling with personal issues.

This weekend one of my closest friends V moved house. Something quite ordinary to most. The problem I have is that for reasons i can’t go into. I don’t feel brave enough to visit her house yet it’s to close by to someone from my past. I feel stupid for not being able to face going yet. I will do it eventually I just need time to build up to it. I’ve been offered help to go for the first time and I’m going to think about it before deciding.

Going back to the oldest boy my 5 year old. I had my long awaited appointment with the paediatrician on Thursday. I felt like it was a total waste of time. After messing around with staffing, swapping  Drs, one retiring etc.It was a basic meet and greet with a few questions asked. I was expecting more from it. I was disappointed and downhearted. I’ve gotta wait another 3-4 months for another appointment for him to be assessed. More months of uncertainty. More waiting more chasing. It’s frustrating.