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. ✌🏻
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.
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.
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.
Going back to last April I was annoyed when my eldest son didn’t get a place in the school he wanted to go to. I ranted on Facebook, I sent off for appeal forms I really wasn’t happy.
At that time I wasn’t talking to my eldest sister and she worked at the school my son got offered a place at. I thought she would signed him out and treat him differently because of our fraught relationship. After learning that a child that my son didn’t like was going to the school he wanted to go to. With all the stress we went through with our youngest at the same time we didn’t want our boy to go to school where this child would make his life hell. We changed our minds about the appeal, we spoke to our son and he was happy with the choice he had made about going to the “purple school.” Turns out of was definitely the right decision to make. They have been nothing short of fantastic including my sister that we wasn’t talking to. She was teaching a different class to what he was in anyway.
The school have been fantastic they got is the referal to a paediatrician to him to be assessed for autism, they have him a tent as his safe space. They pre teach him when things need to change, they listen to any concerns I might have and they really have fantastic communication. His teacher is lovely and she’s very approachable which helps if I have questions I need answering or he’s having a particularly bad day.
I’m proud of how well he’s doing with his school work, he has reached for his work all of his end of reception targets. His imagination and his personal and social development and managing his feelings is be,ow his end of year target. I feel for him but it’s to be expected.
He has so many professionals involved that I hope by end of year one he can improve on that. I won’t lie about my children and make people belive they are perfect and can do no wrong it sets them up to fail. There’s no point in lying making out they are exceeding targets etc might aswell tell the truth and then they room to grow and improve. I love my boys exactly as they are and I’m the first to admit that it’s hard with the individual diagnosis’ they have. It’s the life I’ve been given I can’t change it I just have to try and learn how to cope with it.
Almost all of my posts have been related to my youngest son his heart defect and how I’ve been feeling. This one is slightly different. This is about my eldest child who is at full time school in reception.
I’ve always known my eldest was a bit different in the way he reacted to certain situations he never liked the sound of the Hoover, my hair dryer freaked him out and he never liked noisy children. When he was in nursery the staff told me he was possibly autistic I still dont really know what Autism is, how it comes about or how you deal with it.
All I know is my son is loving and kind and funny and cheeky but he hates noise, he can’t cope in large groups of people, he doesn’t get other children and prefers the company of adults. When he can’t tell us how he’s feeling he gets very frustrated and has a meltdown this could be over something small but to him it’s affecting him. A meltdown could be crying, getting angry, throwing things or hurting himself somehow. He gets very distressed and sometimes I have to admit it’s frustrating and can be annoying.
The most annoying thing is when I don’t know how to help him, how to stop him having a meltdown or how to calm him down when he’s having a meltdown. Sometimes I find distraction helps him other times he needs to go somewhere and be on his own.
In social situations it’s extremely difficult to help him when you feel people’s eyes burning at you. Looking at you, watching you, judging you. Sometimes they talk behind your back, sometimes they laugh and it’s hard and it’s annoying and frustrating for me as an adult when they do that. So when my son is distressed it’s not him being naughty it’s not him being a little shit or a brat. It’s him not being able to cope with his surroundings so he has to have an outburst. It’s his only way of coping when he gets so frustrated and stressed.
I feel like a bad parent sometimes not knowing how to cope with it by getting stressed out and sometimes I’ve angry when he has these outburst or meltdowns. But to be fair to myself I was in a bad place at first myself.
Now I’m having to re learn how to be a mum to him. How to not make the situation worse. To constantly reassure him that I love him and I will help him however I can. It just means I have to have a different kind of support team around me again aswell as my existing support. I need and want to be the best possible mum I can be to him but I need help to do that for him. I want to learn about autism and I want to learn how to help cope in his surroundings and learn how to help him tell me how he’s feeling. I’ll do whatever i can for him and get all the help I can. Ask the right questions and get the right help so he doesn’t miss out on things he can’t cope with.
If anyone reading this can offer any advice I’d be grateful if you could share thoughts on how to cope. How to help, what works what doesn’t.