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. 

Advertisements

Reading 

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. ✌🏻

Not sorry

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. 

The shit hit the fan. 

Well today the proverbial shit well and truly hit the fan. A week or so ago I’d waited 15 mins for a bus 3 pushchairs got on before me one of which had a 3/4 year old able to walk in a stroller. It would have been nice given that I’d waited a long time and my 2 year old who is unable to walk was asleep to be let on my one of them folding a pushchair down. They didn’t so I had to phone for a taxi. I was already pissed off but then the driver that turned up put the taxi meter on before he got out of the car. Before I got in or even loaded my pushchair in. My son had just woken up he was still sleepy in my arms. I’d been charged by a so called family member to put my buggy in the boot. 

I told the guy who owns the company I was not impressed I was not happy. Well today I go to my sisters and ask for a taxi into town for 10:45, it turns up at 10:50 and it’s the same driver (the “family” member) that previously over charged me the week before. I needed the cab so I was gonna get in and say nothing. I left the house to go to the taxi and he tried to drive away I try opening the door. He gets out and says no I don’t want you in because of last week. I said fine I’ll walk. I rang up the firm again and says right I need another taxi and fast because he refused to take me. 

Then I ranted on Facebook like we all do. That’s when the shit hit the fan. My grandad having a go, my “auntie” (the drivers wife) having a go. All telling me I’m lying etc I was to get my facts straight. I had my say and I wasn’t backing down. The conversation ended with my grandad telling me not to go to his house again. Me saying fine by me. I was angry how dare they treat me like that. It’s no loss of mine and I have no intention of crying any tears over it. They are not people I want my children growing up around. 

Been a while

I’ve been neglecting my blog for a while. It was my source of needing to get out what was rattling around in my head through bad times. 

So what’s new?…. 

I have been completely off meds cold turkey for 3 weeks now. 90% of the time I’m fine. The other 10% is catching up. I had a moment on Wednesday where I had a rough day. When it comes to my heart babies health i am always going to be anxious. It was the uncertainty of not knowing if he had chicken pox or not. Turns out he does. Once I knew I eased off a bit. I kept my eye on him and it turns out just as testament to his strength he was too poorly with him. He had them pretty midly (thank god)

Tuesday last week I had a meeting with all professionals involved with my youngest. It went brilliantly. It was all so positive and everything Is going so well with him. Everyone recognising my hard work and how well I’m now. Felt good. 

I celebrated my 4th wedding anniversary we went out for a meal at a local restaurant. 

The toddler group my youngest goes to that have been so fantastic and supportive are closing down in July. I am gutted and now searching for a nursery. I put his name down for one near the centre of town. There was total miscommunication now I’m put off and looking elsewhere. 

The cardiologist referred my youngest to a genetics clinic back in April the call came today and I had to go through everything again right from the start. It got to me by the end of the call I was in tears. I’ve had a shit day I’m tired, stressed and emotional. Off meds 3 weeks and already wondering if I’m being tested on my strength. My life hasn’t been my own for 2 years. Constantly chasing appointments, making calls, going to hospitals. The list never ends. Today I give up I’ve had enough. 

Poem

It can happen during utero,Or sometime after birth.

The news that makes you tremble,

The news that shakes the earth.
“we hear a distinct murmur ma’am,

There’s an issue with the heart

We’re not sure your child’s chances ma’am,

It’s going to be a rough start”
You think “why me? Why us?”

As you try to choke back tears

Your world crashing around you,

While you’re consumed by your worst fears.
That sharp pain in your chest.

The heart break, like a knife.

Watching your precious child

Fight so hard for their life.
The first few months are brutal,

You walk around like a zombie.

Endlessly wondering

“will my baby get to call me mommy?”
“don’t worry, it will get better”

Is something you can’t stand to hear.

It feels like everything is getting worse!

The end, it feels so near.
Then suddenly the days,

Seem to get a little brighter.

As you stare with loving eyes

At your precious little fighter.
You’ve never been so proud

Of one single little soul,

Gradually reaching milestones

And accomplishing their goals.
A heart moms journey

Is one that never ends.

Filled with support and compassion,

Of other heart mom friends.
We all love a little deeper,

And care a little more.

Reminding ourselves everyday,

Of how much we can be thankful for.
We were given this life for a reason,

And at times it can get rough.

But we use our kids as examples,

Of how to remain tough.
For us, strength is not a choice.

It’s a lifestyle we have to lead.

It’s what keeps us going,

And it’s what our heart child needs. 💙

Recovery 

I have been suffering from depression for only 2 years. But in my life it’s been a very long very difficult 2 years. For a while now after starting meds I’d started feeling better. The anxiety went away with just a little bit left over. It was refreshing to have that break from feeling it so much for so long.

I had counselling which I was quite sceptical about it actually helping. I’m actually surprised that just by talking things through about the diagnosis of my youngest son and his operation it opened myself up to healing. The counsellor listened and told me I blamed myself and I held myself responsible something I already knew. But I guess I was way too hard on myself and shut myself off from emotions because I was trying to be strong. 

I had my last session last week and every week we do a scoring system to see how depressed you are. The last 2 sessions my scores were dramatically lower then previous weeks. Last weeks being so low she’s told me I’m in recovery now. Music to my ears. Emotions poured out like relief has washed over me. I finally feel like the person I was before with stronger beliefs and stronger friendships. This is the end of my journey with depression now. On Thursday I go to see my gp with intentions of lowering my 20mg dose to 10mg to come off medication. Getting to tell the person at home start that supported from the start that I’m in recovery felt amazing. 

Without their support and the support of my friends I wouldn’t be where I am now. I had love and understanding when I needed it the most. Thank you all for reading this blog