The difficulties of wanting to be but being unable to be social
It’s been quite some time since I’ve been able to sit and articulate what’s been going on in our lives. It’s nearing two years since I brought Music n What Not out of retirement and started redesigning and building this blog, and with what this space means to me it only feels right to share this side of life too.
It’s no secret I haven’t published any new blog posts for a long time, I also rejoined 3 Songs & Out as a Reviewer in January and still haven’t even submitted my first and only submission. You could argue that it’s completely unprofessional to be this honest and so disorganised, but if you’ve been here through the Music n What Not on Blogger and The Unlucky Coeliac days you know that being transparent and honest is what this platform is about, not just the music.
I am stuck in a weird place of wanting to be social but having no energy, wanting to check in and catch up with friends but having no physical time. I am in a cycle of being up to date and falling behind with University and I am only on my third assignment of my second year as a part time student. I am stuck in a position where I am trying to be the best me, best mom, best advocate, best wife, best friend I can be, whilst failing miserably at being a blogger, creating content and being a music reviewer.
The reason why is because we have spent the last year and a half dealing with things that as a parent you could only dream of being easy and smooth sailing. But as someone who has been aware of this side of the world for a while you can’t help but not be surprised at how ridiculous it actually is.
At two and half years old our son was flagged for an Autism assessment which required a referral from his health visitor and nursery to be completed. He had regressed massively in terms of his vocabulary, now being non-verbal/non-speaking and was undergoing tests with ENT to establish his hearing capabilities. Since this point we have faced endless delays and even what you could argue as push backs and some setbacks too.
At the time of writing this we still haven’t yet had his assessment for Autism, as his referral was lost and had to be resent in April 2023 (five months after it was originally sent). We asked multiple times for an Education Health Care Plan (EHCP) to be requested by our Area SENCO to which she refused each time and we ended up doing a parental request for one which was granted in December 2023. And the icing on the cake… Our son’s cohort for school is this September (2024) and at this point he has no school at all, with our local authority hoping to have one for January 2025.
We didn’t get to announce we got first choice in April, we don’t get to spend the summer holidays buying uniforms and preparing for his first day. We don’t even know when that will be. We finally saw our first choice specialist provision on the 24th May, and we received quite a negative tour that we are now contemplating complaining to the head teacher about. And all other specialist provisions are just not responding to us about going and visiting their setting.
We are being told that a certain type of school setting is best for our child by people who see pieces of paper that detail his needs. Six of those types (who see the same papers) have said we aren’t right for that child. We are arguing specialist provision, but you can’t get a place in those without a diagnosis which we still don’t have. So it’s a bit like arguing that your dog ate your homework with no proof, knowing that it’s an old silly excuse for not having your homework, despite your dog actually eating your homework.
I’m in a position where I can’t help but envy my friends whose children have school placements because they don’t have additional needs and get to go uniform shopping and prepare for September’s first day of school pictures and take them etc. I can’t help but dread seeing all the TikTok posts of “covid baby’s it’s your first day of school” because our son is a covid baby and he doesn’t have a school. I can’t help but feel like I am failing him as his advocate, when this is so far out of our control.
Juggling being a student, mom, advocate, wife, and trying to improve my health I am out of spoons* before I even get out of bed in the morning. And I feel awful that this means I am not seeing my friends or remembering to check in with them. That I am not seeing my Nan more often than I am and that I am only spending time with my brother whilst studying in a coffee shop (which he actually enjoys as he loves a coffee shop writing session). That I am constantly asking advice from my colleagues, because thank god I work for a disability charity with people who have disabled children/grandchildren, and also from my Mother in Law because she is a goddamn badass specialist in this field of work dealing with these types of things daily.
I really want to see more of my loved ones, and I really wish each time I did it wasn’t filled with more complexity relating to how my son’s journey into school and receiving his diagnosis is going. I understand it must be so difficult for them to be being told things that they maybe don’t understand as they don’t have children or don’t have children with additional needs or have relatives who themselves have or have children with additional needs. But the truth is, this is our reality and it really fucking sucks because we are battling with the local authority to protect our child’s mental health and wellbeing and he isn’t even four years old yet…
And now we come to the end of this long post and I myself can’t help but think so what’s the purpose of this post? Well, the main purpose is to ask you as my readers to continue to stick with me as I navigate this period of life and come back to Music N What Not when I can. But to show someone who may be going through the same thing that you are not alone. To highlight to those who aren’t in it that it can be incredibly challenging to be in this world as a parent to a child with additional needs so please give your friends, colleagues, family members a little more grace and don’t push them away because their time is different to yours.
As I close this post off I want to share some resources that have helped us massively, so if you are in a similar position and haven’t already please look at this!
https://www.birminghamsendiass.co.uk/about-1
https://www.empoweringsendfamilies.co.uk/
*Please research Chronic Illness Spoon Theory if you are a little lost with me here xo
Thank you for reading xo
Music n What Not 