Covid Christmas

So I’ve been very quiet of late. If you follow the Facebook Page you will know that i’m currently recovering from COVID. For months now COVID has and still does terrifies me. I’m the lady who loses sleep at the thought of getting a cough due to Reilly’s very severe phobia of coughing. As many of you will know we aren’t allowed to be unwell but COVID has literally had me on my knees.

I suppose my biggest observation and its something that I should do more often is presume confidence. For months i’ve said to Shane what if I get it, you get it, we get it. I’ve imagined every worst scenario there is to imagine, that part comes very easily to a catastrophiser such as myself. Back to presuming competence. I didn’t think Reilly could cope with me being unwell. I have no doubt the coughing has refreshed some already big issues he had but to be honest if I had somewhere to stay he would have kicked me out in a second and cracked on as per usual without a second thought I think but he’s still cracking on getting into mischief and he has managed.

I tested positive on 22nd December, lovely timing for Christmas and schools breaking up. What started as aches and pains became debilitating headaches and exhaustion like i’ve never experienced. The night before my test I slept on our sofa as I couldn’t get up the stairs. Then came the cough. I will take any amount of suffering to myself but to know with every hint of a cough Reilly would get so horribly physically upset so I shut myself away. I looked for ways of easing it for him and plugged in the hoover beside my bed along with the hairdryer. If I felt a bout coming on I would set them away and drown out some of the harsh noise for him downstairs. He’d still hear it though.

A positive to come from the experience is that Reilly has spent a lot of time with Shane, sleeping with him, playing, fighting, watching Attenborough. I now see how horrendous it is for Shane while I am the centre of the attention most of the time, Reilly would look in the room on me and tell me Car, Go NOW and want me out the house. The 10 days isolation for the household certainly was challenging. You try and explain to Reilly why he can’t get on the X8 bus see how far you get.

Christmas day was a washout. Reilly went through his presents like a piranha and retreated straight back up the stairs and with no taste, smell or appetite dinner was a write-off. Silly me decided I would be fit for New Years Eve and that we would rearrange for then. How wrong could I be. 9th January now and I’m still exhausted. My cough is subsiding at last and I have my appetite back so on the mend but by no means fixed. Reilly hasn’t been back to school yet, to be honest I don’t have the energy to get him ready and get him there but we have decided he will go back on Monday. His sleeping is OFF! For the last week while craving sleep Reilly has put in around 3 hours per night. Now that my cough is subsiding he doesn’t leave my side and by christ its so hard.

This got me thinking. How on earth are you coping with covid and an autistic child? I am lucky in that I have my friends, buddys etc who are available to go to the shops, pick up prescriptions, there for a chat but what about those without it. I cannot begin to imagine. I’m struggling. Thank god if Reilly did have it he wasn’t ill like I was. Everyday we have done the do you feel sore encouraging him to point and make us aware if there was something off.

If you need someone to talk to, help with shopping, appointments etc please get in tough about our buddy system via the facebook page. We have people who are already helping those in need and we have room to help more. My mental health has taken as much of a beasting as my physical health, its so important we try and keep it all in check.

So back to school on Monday. I’ve seen a lot of conflicting views on SEND schools and parents being deemed as irresponsible for sending their kids in. PLEASE don’t judge. Every single one of our kids are different and they all have their own needs which as parents we will go to the ends of the earth to fulfill.

Back to recovering and can’t wait to have a few hours alone next week to just breathe and sleep.

Lots of love and a healthy New Year to you all xx

The Mams

The last couple of weeks have been incredibly busy.  Preparing for an invite only performance of Life of Reilly at Northern Stage, preparation for the ball on 1st June at Hilton, pre production film meetings as well as the other 2 million things I do to keep us ticking over with Reilly is keeping me on my toes so to speak.

Tonight was final rehearsal before the show.  I went along with intentions of watching but ended up sat with ‘The Mams’.  We drink tea, they help me with any questions I have and offer their help, they also lend me an ear.  We have built up a little comradery.  They are supporting their daughters but also us in the quest to educate more people.

We got on talking tonight about sleep.  I started to recount the days when Reilly was little and by surprise it made me very emotional.  I can look back now and see how far we have come.  Reilly was around 4 years old when my health visitor drove past me in the street with Reilly and turned around to come back.  I looked horrific.  I was barely functioning on around 3 hours sleep.  I told her I felt like I would die or have a nervous breakdown if I didn’t get some help.  Prior to this  Reilly didn’t just not sleep,  he screamed most of the night.  Inconsolable real tears and we didn’t know why.  He couldn’t tell us.  Was he in pain?, had he a nightmare?, was he frightened?, We had no idea.  Nights turned into months and even into years and we coped best we could.  Shane trying to sleep as he was up so early for work but spending much of the night as back up for me and taking his turn at swaying Reilly looking at the stars, something we would do for hours on end.  Ellis my middle son near moved in with my parents just to get some sleep.

At the time I felt like a massive failure.  One child I didn’t understand and the other didn’t want to be in the same house.  I was lucky that I didn’t have to go to a 9-5 job,  if I did I’d have surely been sacked.  I tried catch up when I could but chances were few and far between.  There is only so much your body will take before its says enough is enough.  I was at this point.  

A day after my chance run in with my health visitor  I picked up a prescription for melatonin – melatonin is naturally produced by the body to regulate the sleep-wake cycle. Its levels begin to rise shortly after nightfall, promoting sleep.  I was terrified to give him it,  Was I drugging him? Was I copping out? What would people think of me?  All the normal what if’s.  I can put my hand on my heart and tell you that without that run in I was indeed headed for a breakdown.

We’ve moved forward in so many ways.  Not thought about that grey area of my life for a long time.

We struggle but we’ve got this. Talking helps.  I’m lucky I have Alison & Kelly who have been there and bought the slightly different t-shirt but always on hand for advice.

To The Mams as I lovingly refer to them thankyou ladies for the support for The Life of Reilly and for me.  Appreciated more than you know. x

 

Kids in Crisis – my worries

I’ll go first.

Anxiety.  Depression. OCD.

I lovingly refer to them as my mental threesome.  Every single day I deal with an aspect of these 3, usually a combination of all 3 together as they all thrive off each other, one gives the other a leg up so to speak.  I hate it.  I’m jealous of people who have never been afflicted.  There is only one thing more terrifying than me suffering from mental health issues and that’s my children suffering too.

Panorama this week was Kids in Crisis.  Children with mental health problems unable to access the right help at the right time.  It broke my heart, not just for the children but also their desperate families.

You can watch it here Kids in Crisis – Panorama

We all worry about our kids well-being,  that’s our jobs as parents but knowing the scales are tipped in Reilly’s favour makes me sick to my stomach.  He’s already earmarked just by being autistic, for many autistic people  mental health problems go hand in hand such as anxiety, OCD and depression.

US study  found autistic people die at an average age of just 36.

36!

Why? well there are many factors that contribute to this.  Suicide being prevalent and also death by injury, drowning is a massive factor.  Autistic people are more likely to suffer from diabetes, heart disease, gastro problems, lack of sleep, bullying etc to name a few.

So where parents like myself go for help for our kids?

CAMHS Child and Adolescent Mental Health Services is the NHS service that assesses and treats young people with emotional, behavioural or mental health difficulties.   Kids in Crisis looked at the horrific waiting times that children have to wait to be seen.  The service is overstretched and rejecting more children than ever.  How sick does a child have to be before they get help?  suicide ideation, self harm, numerous suicide attempts?   Apparently so.  I have been in contact with people who have said they have had a brilliant experience with CAMHS but they are few and far between.  The reality is there are families in despair waiting for their children to be deemed ill enough to receive help.

Early help and intervention is crucial.  Years spent on waiting lists exasperates some conditions.  Conditions are allowed to escalate to breaking point where the child has become very ill indeed sometimes making numerous attempts on their lives.  Children trying to take their own lives.

A broken leg would attract instant help, why not our mental health?

These are my worries for the future and millions more families just like ours.  Mental health needs more investment NOW.  Speak up, speak out.  Not just for more investment –  1% of the current NHS budget just isn’t enough, but talking about mental health is a way to make kids feel like they aren’t alone.

Funding in the North East is being cut left, right and centre.  Counselling services in schools now considered a strain on a stretched school budget but at what price?.

How can we expect children to talk about mental health when everyone around them remain so guarded.

https://youngminds.org.uk/find-help/

https://act.youngminds.org.uk/join-our-fight-new-era-young-peoples-mental-health