Good morning lovelies, today I wanted to talk and open up about something I have only ever briefly mentioned on her before. I feel a little vulnerable talking about this and though I fear I am opening myself up to opinions and criticism and that maybe this is a topic I should keep private, I can’t help but feel a pull to write and share this ongoing experience from my perspective of a mother. Reading other people’s life stories and experiences has always really helped me in the past, so much so, it helped me to identify that me, my mum and my sister were living an abusive life with my dad and though that’s a story for another time, Reading about someone else’s abuse story helped us recognise what was happening at home and ultimately lead us to eventually getting out of that life and beginning a new one. And though my blog really doesn’t have a big reach at all, I still feel it is important to put it out there and share our story because when people are struggling it can be an incredibly lonely experience, even if you’re fortunate enough to have people around that support you, it can still feel like no one quite understands. But when you read that other people are going through the same or a similar experience, it can make ones world feel a little less lonely. Not because you’re happy that someone else is suffering but because you are reassured that you are not alone.
Today I wanted to talk about Nova-Rose and the journey I expected we would be having as parents vs the reality. Nova-Rose is a couple months away from turning three, she is non verbal, still not potty trained and eats only toast and bananas. Nova-Rose from when she was born was ahead of her game, she was standing up against the sofa at five months, taking her first steps at eight months and properly walking by ten months and that wasn’t because we were those parents that pushed for early milestones, we didn’t care about that but obviously we encouraged what was naturally coming through within her. Nova-Rose ate a varied diet with avocado, banana, beetroot and apple and I would cut up our adult meals at dinner time and she would happily eat it all! Peanut butter sandwiches, ice cream, chocolate and crisps were also amongst her favourite foods. She would even drink celery juice in the morning with me and snack on little oranges. Nova-Rose in her first year would dance, clap, high five and even tried to sing along to songs that she liked and watching her develop like this was so gratifying as a parent. I put in a huge amount of effort when I was pregnant, I did my best to eat healthy and stay on track with what I would consume because I knew she would only benefit from the nutrients I put into my body. And as you have already read I didn’t just resort to feeding her meals that were always easy to prepare, I took the time to create nutritious meals and it seemed like this was always paying off as her progression was undeniably evident.
After she turned one in the beginning of 2020 we had some challenges to face, she was due her vaccines and covid was about to cause worldwide problems. First we had to delay her vaccines because she wasn’t well and its best to vaccinate little ones when they’re fit and well! Then it got delayed again due to covid lockdowns. Eventually in the summer of 2020 we had her booked in for her vaccinations and if I’m honest I was quite relived that we had been able to avoid them up until that point because I am someone who questions these kind of things, like how necessary are they? What is being injected into my child’s body? And she’s already had vaccines shoved into her little body within weeks of being born, how much more does she need! I am not slating the MMR vaccines and yes, one could argue that they are life saving or so we are told but why shouldn’t I question it at the very least! I think as a mum its my responsibility to question these things. Just before we put her in the car to take Nova-Rose to the nurse to have her injections, I remember this overwhelming feeling like I shouldn’t be doing this, I should keep her home safe and away from these jabs. But I was also plagued by the narrative that if I didn’t get her vaccinated then she could get really sick! So we took her, she cried, she was unwell for a couple of days after and that was that. In a way I was relived that the uncertainty and indecisiveness of it all was finally over.
Since last year we have watched our daughter regress, she slowly stopped eating all the foods that she once loved, to the point that now, she will only eat toast or banana that I blend up. She has never said a word, though she is a very vocal little girl, she doesn’t have a vocabulary of any kind and it appears as though she rarely understands anything we are saying and so communication is pretty much non existent! Thankfully I am quite in tune with her wants and needs and so For the most part we get by but it takes an extreme amount of patience and concentration to be able to intuit what she is needing from me throughout the day. Maybe this doesn’t help her progression but she gets so frustrated when people don’t understand her, I need to be someone that she can rely on to meet her needs.
It’s so emotionally taxing to have a non verbal child, not to mention mentally challenging. When I see videos of little ones online having their little conversations with their mums and dads or little ones out and about and down the park speaking in their cute voices, calling out ”mummy” or ”daddy” it physically aches in my stomach! I would love to know and hear from my little girl what she’s thinking and what shes feeling. When we’re out and kind strangers bend down to say hello to her and she doesn’t even acknowledge them and they just look a bit bewildered, only makes me feel obligated to explain that she’s non-verbal. I know it might not seem like a big deal and honestly in the grand scheme of things, it really isn’t but sometimes it can trigger anxiety within me.
I think with all parents, even confident ones, we all have a tendency to question ourselves on whether we’re doing a good job or not and I guess that isn’t always a bad thing because though I feel it is important to have faith and trust in yourself as a parent, it also isn’t a bad thing to be open to looking at yourself and asking yourself some difficult questions and to be open to new ideas that might be a benefit to your parenting style which in turn will benefit your child. But when dealing with a child who is so clearly going through regression in many areas and is non verbal, it can be so easy to slip into an emotional battleground inside my head, feeling like it can only be something i’ve done wrong or maybe it’s something I’m not doing enough. I have been made to feel at times that because I’m so intuitive with my daughter’s needs that this could be the reason shes not developing in the way “she should”! There are times where I feel like a failure as a mum and I must say this, I am sincerely not looking for sympathy or reassurance when I write this, I Say it because I want anyone who is going through something similar, to know that they’re not alone during the times they think or feel this too. But just because we feel this way it doesn’t make it true! It means that we care and it means that we want the best for our child.
What frustrates me in this scenario is that here we are questioning ourselves, when there is a very real possibility that our children who regress past “ normal” regression standards, who are non verbal and/or who are showing signs of potentially being on the autistic spectrum are dealing with the effects of the MMR vaccination! Now I knowI open myself up to all sorts of criticism for saying this and especially in these intense times but when it comes to baby vaccines I do not consider myself and anti-vac because ultimately I would rather deal with these disorders then have my little one be at risk of something more life threatening. That said, I find it perplexing that the doctors, nurses and healthcare workers are not more forth coming with the information that these immunisations can cause these regressions and go on to autism because then maybe parents could be more prepared for these possible changes and outcomes and be less likely to feel bad about themselves, like its our fault and down to our parenting that our children are not progressing in the same way that other children seem to be.
Only now is there documentation admitting that these vaccinations can cause regression and autism, which of course i’m grateful for but generally this isn’t known by the masses and this awareness has to be changed and I think its only right that new parents are better informed by health care professionals. I also want to express that I can’t say for sure this is the reason why Nova-Rose has regressed, this might have been something that was always on the cards and I can only say that this comes from an instinct I have had and that is partly due to the small diary I kept with few notes in the first couple of years after having Nova-Rose. Everything I wrote down prior to the immunisations was that of positive progression and after the vaccinations was when she began to regress with her food, her social skills and just in general. I am in no way trying to discourage anyone from vaccinating their babies because there is a lot to be weighed up, I simply wanted to share a different perspective, a perspective from my own experience and a perspective that I know I am not alone in.
Having a non verbal child with other regressions isn’t easy for a parent, I look forward to the day she first calls me mummy. When I will finally hear her say ”I love you too” it fill my eyes with tears just thinking about it. it hasn’t happened yet but I have to have every faith that one day it will. It might come across that i’m complaining about Nova-Rose’s regressions or like i’m not grateful for her but let me tell you this, that certainly isn’t the case and couldn’t be further from the truth. I am so incredibly grateful for our daughter, in her difficulties she has taught me patience, unwavering patience. She has reminded me that there is no space for me to project my expectation and my ideals onto her, I am here to be her mum not her dictator. Everyday I am amazed by her strength, it must be so hard to be in world where you are not yet able to express what you are wanting and needing from the people around you.
Despite Nova-Rose’s challenges and regressions, I am happy and grateful to say that she now gives me and other family members eye contact, something which she didn’t do before. She now acknowledges her cousins with who are more like brothers to her, as for months she just would act as though they weren’t there and now she will run and hug them as soon as she sees them. She will give me kisses and cuddles, the kind of returned affection I longed for not too long ago. Nova-Rose now enjoys outings, as for almost a year should would cry whenever we went out, admittedly she would be better in her pram but she would chew on her pram straps to soothe herself. It was very hard to see her discomfort when we were out and though in some ways it’s still a working progress, we have made progress and that for us, is something to undoubtedly hold on to. I am so proud of Nova and I absolutely love watching her explore the world she lives in, she loves the outdoors, being by water, popping bubbles with her face and is so wonderfully inquisitive by all the new and intriguing things that surround her.
Whilst we have spoken about getting some professional help, for right now, we are just giving her time to see if she will continue to progress at her rate in her own time. I I feel if and when we do get some help, it’s likely going to be private as I am so skeptical about going to a healthcare worker due to past experience. I feel their knowledge is limited in these areas or at least in this part of the country. They, in my experience are condescending and a little regimental in their approach when dealing with children who are having difficulties in this sector.
If you are going through a similar situation I hope you remember that you are a good mum/dad and all that our children need from us as parents is our devotion to loving them, remaining patient with them and remembering to have some trust in ourselves and also to trust in them that it will all be okay. If you need outside professional help, that’s okay too but always keep in mind that it is you that knows your child better then anyone and to always listen to your intuition even if it goes against what the “professionals” are saying.
Thank you so much for taking the time to read this and please feel free to share it with anyone who might benefit from reading this too. Also, if you think you have any helpful information that you can share with me, I would be happy and grateful to receive it.
Sending you love, light and strength this Thursday,