It is a fantasy to think that you can be happy constantly, some days really are sent to test us and I expect there are lots of people who have had an excess of these testing days during the pandemic. Happy isn’t appropriate in all situations, we have to understand which emotions are just healthy responses to life’s challenges. I believe our thoughts and emotions should mirror the world. When something bad happens, which the current climate is reflecting, we should be allowed to have negative thoughts and feelings about it because that’s how we understand the world.
I want to share with you all today a deeply personal email which I hope in some way manages to connect with one of my readers to maybe make them not feel so bad about feeling so bad.
Scarlett has never been the best of sleepers- the struggle is real with that one. It is something that many people who have a visual impairment have issues with, so it is not abnormal for your child to find getting a good full nights rest difficult. I explain issues surrounding sleep further here. Scarlett loves to bounce and can spend all night bouncing on her bed, I felt that if I replaced her bed with something not so bouncy then that would help to promote a bit more shut eye. So I got her a new full memory foam firm mattress to replace her very tired pocket sprung one, with the view that she would just think “Oh no more bounce, lets sleep then instead” oh how wrong was I.
As she was unable to get the feedback my little sensory seeker obtained through the copious amounts of bouncing, she sought out an alternative way. Her new ‘delightful’ behaviour is door kicking- and not just the odd one and two- it can be compared to a stampede of elephants- if you look up the definition of stampede it literally says “uncontrolled concerted running as an act of mass impulse among herd animals or a crowd of people”- it does sound like there’s a herd of Scarlett’s in her room and not running on the ground but against the door. The sheer strength of Scarlett is something to be marvelled at, but it can also be quite problematic when certain ‘behaviours’ come into play. This kicking can carry on right through the night till the small hours. Poor Sonny, my nine year old boy, has been really put through the proverbial mill with it, my heart breaks for my little boy at times like this, his behaviour is exemplary, and his young mind is having to comprehend what is happening and be empathetic towards it, when it can be difficult for me to understand as a grown woman. Levels of frustration have been at an all time high and I’m terrified of her hurting herself too as she just doesn’t register pain in the ‘normal’ sense.
On to the email:
So at around 4AM mid door kicking marathon I took it upon myself to contact the many people who are involved in Scarlett’s life just to make clear the levels of desperation I had reached.
“Sorry for the delay in responding and also for not returning the paperwork as agreed.
No things are not okay, Scarletts new habits developed as a result of a none bouncy mattress are completely destroying my mental health and well being. I’ve been here for 10 years now, I’ve done many many diaries for whatever professional has asked for one. I’ve dedicated a considerable amount of time too trying to unpick and understand whatever behaviour I’m trying to help Scarlett with.
I’m a very patient person, I always have time to try and work out issues and problems to give Scarlett the best possible life she can have. Scarlett is kicking the door now right through the night and its something I’m not really coping very well with.
Now I’m sure you’re aware that I get respite in the form of Scarletts dad, infact, I’ve literally had a full seven days where I could sleep… it doesn’t mean that now I’m not in literal tears writing this email trying to express how much I can’t cope with the relentless kicking of the door through the night… yes even after a week free from it.
I haven’t got anymore time to dedicate to try and work this issue out. These are the two things that Scarletts needs to fix this problem:
1. A safe space bed… I’ve trawled the internet for help and advice and this is the thing I need. Ive just been given a grant for a new which has proved massively detrimental. The OT from Seashell has said that is something that you can help with. Even if you can just help me with getting a loan version of the bed to completely ensure it was the right product then that would be a start. I’m sorry I dont want to do a diary or anything now, I’m completely spent. This is what she needs to keep herself safe and me sane and let me little boy rest too.
2. She needs to go back to school, alot of Scarlett behaviour issues were massively helped by starting school. I understand that under the current climate things are difficult in that department, but no ones told me anything. Theres no light at the end of the tunnel… nothing to aim or work towards. She just needs to be going back to school and some of this level of uncertainty stopped for both of our sakes.
I’m sorry if this sounds like a desperate cry for help, something which I’m really reluctant to do, but I need the two things listed above resolved without it taking weeks or sitting on yet another waiting list. I’m struggling to function now, my other child is suffering, my work is suffering. I’m holding my hands up here asking for help- not sympathetic conversations or an extra night respite- the two things I’ve listed above are what Scarlett needs.
Ive sat in my car tonight outside my home just to try and have a minutes break and calm down from the noise… you can hear if from outside the house in a shut car door. I’ll happily send you videos or you can come and do a sound test outside my home and see what noise is now happening and until what time.
I hate asking for help, I hate feeling like I’ve failed my daughter, I hate the thought of her hurting herself, I hate seeing my little boy tired.
I’ve cc’d in all the people who are involved with Scarlett in the hope that someone picks this issue up and can help her because I’m just about giving up. “
I really was in two minds about publishing the exact email as you can see it is very personal, and makes for pretty grim reading. 4am tearful emails are something that I would recommend you should avoid, acting in a period of heightened emotion rarely ends well, but I felt on this occasion that it was required. I expect most parents know the feeling that people only step in and help when crisis point is reached and to be able to demonstrate that normally results in some action being taken. It is an inherently flawed system but one in which our lives of raising children who have disabilities has to exist. It does sound like a big red flag of heading towards a nervous breakdown though… I am a tad dramatic and neurotic with an affinity of putting personal traumatic moments into lengthy bits of writing- emails, blogs, text messages.
I was just so completely and totally overcome with frustration, its a really difficult part of life to feel like you are unable to do the very best possible for your children- team that with sleep deprivation and it creates an troublesome predicament. It is a literal hole that you find yourself in and when you are in there and you have no tools to get out and you have exhausted all the different escape plans you really start to feel like there is no hope. I saw something on social media that perfectly articulated what I am trying to explain here.
I expect this is something we can all understand with all of our hearts. These holes happen, like little pockets of difficulties, and sometimes trying to get out of them results in them becoming deeper. It feels like all the places you can go to, to help you out of the hole are happy to help,but its going to take a whole lot of jumping through hoops on your part before they eventually pull you up.
Am I still in the hole?- well unfortunately indeed I am. Are there people working towards helping me get out of the hole?- indeed there is. Scarlett’s return to school today will hopefully start to help her, perhaps the sensory diet implemented by the OT, or maybe the very early starts, hopefully the increased amount of mental and physical stimulation will help her to seek out inner calm. The tiny baby steps towards normality will hopefully have a positive affect on the sleep element of her life- there is nothing more satisfying than a happy, calm, well rested child. In terms of Sonny, his time at school will give him some much needed respite from some of the strains we are faced with when we are both simultaneously providing care for Scarlett. He is such a kind thoughtful boy and I’m racked with guilt thinking he is taking far too much responsibility on his toes- I want him to be purely a child, I don’t want him to be kept awake through the night or have to see his mummy in irate mode. I don’t want him to think a stressful home environment is the norm- no matter how well you think you hide it they can see it. They can see it when you are unable to listen to their stories attentively or have to be three coffee’s deep to become fully engaged. It isn’t fair. Unfortunately the Safe Space bed requested in the email isn’t an option, its not something we can get funding for, so I really hope that the return to school is the magic wand all three of us need.
I’m going to pad this section out with cliches as the point of refection is still just over arms reach, so here goes:
- There is light at the end of the tunnel
- Patience is a virtue
- It may be stormy now, but it never rains forever
- Don’t worry about getting perfect, just keep getting better.
- Its about learning to dance in the rain.
I could list many motivational quotes here about pushing through tough times, they can serve a great purpose when you seem a little like you’re stuck in a hole.