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.
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.
So what started off as a picture of some pasta just started a feed of negative bitchy comments.
I posted this picture of superhero pasta on my Facebook page. My 5 year old who I am waiting to get diagnosed for autism has never got his head around things being the same but different shapes. So we know he likes spaghetti and bolognaise so I bought him some superhero pasta to try. He got very excited about it (which he doesn’t about food) and I made my own bolognaise previously I bought microwave meals for him. He ate a really good portion of it and he was so impressed by the superheroes it kept him interested in the food. So as a result he ate more. A massive step for him and being proud of him I shared the photo.
My sister was the first to comment asking how the pasta tasted any different to normal pasta. Well it doesn’t obviously. It’s the fact he ate the pasta and liked it, it’s the fact he has s very limited diet and I’ve been working my arse off to try and get him to eat more food. It’s just the negativity I’d expect from them and it’s put me on a downer. I’m sick of the shit from my “family.” I’m sick of feeling like I’m on the outside looking in.
I had such an amazing weekend after such a crappy week. I’ve felt so incredibly low in mood all week and I picked up my mood and went out on fancy dress on Friday to the off ice skating rink, I went with my friend L and 2 of her girls. I really enjoyed it. Then last night I went out for a meal and drinks with 2 other friends in fancy dress. I had an awesome time and it was what I needed to pick my mood up. Now it’s taken one stupid comment from someone who should have understood previously being one of his teachers at school.
I hope I can pick my mood up again I don’t want to keep feeling crap. I have a lot on at the moment and I’m trying to find ways of dealing with it and coping.
I’ve been doing this positive parenting course for children with additional needs and disabilities. It’s almost over and I’m not ready for it to be over. I’ve had 3 course sessions but it’s only been one where I felt like I was getting somewhere.
I wanna access more help, I feel like I need more help. Maybe I don’t maybe it’s just that I have zero confidence in my ability. I’m suppose to be getting a call tomorrow as it’s one of the telephone sessions where they check how things are going, if you need any advice or need to ask any questions. Then in a couple of weeks and one last session that’s it I’m done. Back to where I started with a text book to look through.
I’m getting nowhere. I have a paediatrician’s appointment for my eldest in just over a week. I hope it’s to finally get a diagnosis of autism or Asperger’s. I need to know for definite so then I can start getting proper help. It’s half term this week and I’m starting to struggle already. It’s such hard work trying to keep him entertained all day every day. I take him out and he wants stuff all the time, I say no it causes issues. I’m tired and I wanna spend time with him it’s just draining with all the questions, him getting upset because his Lego car broke and he gets “lonely” when he plays on his own.
I still have housework to do and I’m not getting things done because he debsvds attention and then the little one plays up. I try to talk to my husband and I get interrupted because he wants his dads attention and wants a playmate.
I’m tired, I’m anxious waiting for the next meltdown or the next thing to upset him and then I have to get to him to calm him down even when his dad is there. Then I have to do the little ones physio and I can’t because I’m doing everything else. I’m on my own with no-one to call on for help.
This week has been pretty awful. Since last Saturday my anxiety was driving me to think I was crazy. Convincing myself that there was something seriously wrong with my little one. I was convinced and panicking that he was blue around the mouth and he wasn’t. I took him to the doctors to get checked over and left feeling worse because it was a simple viral infection that was just draining him of energy. I swear I feel like I’ve been going mad.
My 5 year old has been unhappy all week going to school upset and coming home upset and unhappy. I don’t know what going on with him he barely ate properly until Thursday. I don’t know why he’s unsettled and unhappy I don’t know if it’s something I’m doing wrong or if he’s just having a bad week. With him having a very limited diet I’ve been trying to get him to eat new food. I got dome sonics from a friend and she suggested we cook together so yesterday we had some one on one time and made sweet potato chips and he loved them. I felt very proud of him. There was no hesitation and he was so excited to make them. Bless him.
That was our finished result.
End of the week hasn’t turned out so bad it’s ended kinda well. My friend V came up to mine this afternoon with her hubby and kids. Few weeks ago she wanted her hair coloured blue well god knows what the hairdresser did to it but it was knackered it was green and washed out after like one or two washes. So I’ve sorted it for her this afternoon. It was a blondey greeny colour and now it’s cosmic blue and pink. It’s looking awesome.
Have to share the results
The feeling I get when someone likes their hair and they feel great after is brillian. I feel so normal and I get lost in the hairdressing and I feel confident. Like the days before depression. If I could feel that way on a permanent basis I would.