I have been a parent of children with additional needs since their births – neurodiversity, mental health issues, medical needs, they didn’t just emerge on a random Sunday morning. No labels were tied to their tiny pink toes by the midwife, but the differences, different abilities, and disabilities have always been there. Signs and milestones met and not, things you see every day. Symptoms can dip, flare, fluctuate, coping can come in waves, and meltdowns hit like a freight train…but most parents will be living the same lives before and after diagnosis. Personally, I did feel a small shift, even if only in my own head. I can’t even say to what. A mixture of grief and relief. More leverage to open closed doors and access to support. As minimal as it is. I took on the mantle of a SEN and disabilities mum with the diagnoses, though the everyday complexities and challenges, that is the same as it ever was.
So, I guess with children aged 14 and 8 with years of experience, of exhaustion, of grit and knowledge under my belt, I find myself feeling like I have slithered down a serpent on the snakes and ladders board, back to the first line of numbers. Years and a decade mean that I have had to carve out an understanding of raising a child with Autism (words matter and we tend to use person-first language but also consider ‘is Autistic’ suitable). My son likes Neuro-spicy; it suits his current sensory seeking with hot sauce on everything edible. Yet, getting to grips with my daughter’s medical needs and physical disability that quite drastically escalated, even though I know first-hand the pain and complexity of many of her symptoms, has been hard. For a bucket load of reasons. It is the little things in everyday living, that other parents wouldn’t give a second thought to that are difficult. Practicalities. It has opened my eyes to the fact that whilst I have had to jump/kick down/have been blocked by hurdles with my son, there is so much in life, in society and the everyday that my daughter in her chair has to overcome. I wanted to share, because you may have some advice. Or reassurance. Or at least, you will read this and perhaps understand our perspective, because that’s important too.
There have been a couple of things happen lately that knocked my confidence, and Norah’s in a lesser way. We try and act as buffers wherever we can. A fortnight ago, we travelled to Cardiff for a birthday treat as this year a party, unlike past years, is now physically too much. It was a busy Saturday, and we didn’t manage to find disabled parking, so we drove in dizzy circles up to floor 5. The only way to get to the mall is the lifts. And above the push button, a sign that said please give priority to parents with prams and people with disabilities, or something of a similar vein. We pressed the button and the lifts were full of people, that would look at us with the chair waiting and say nothing. We couldn’t get in the lift, no one would make space, so we waited, ten minutes and multiple lifts go by, sometimes if there was only a little room, people waiting alongside us would pass us and go in. My partner and I were quietly thrown, and we are patient, but Norah noticed and was overwhelmed. Eventually, when we did get in, when doors opened at other floors, people would press in, with bags pushed in her face or bodies too close. The same issue up as with down, with a longer wait. Through the busy shops, people step in the way of the wheels, on their phones. With avoidance or angry looks when they walked into us. I hated it. Inside Build-A-Bear, the staff were kind, so she smiled again, filling a rabbit with cotton and choosing her very un-bunny-like clothing with sequins. And then lunch time, where restaurants should be accessible, so many places there was no space to push the chair through the busy aisles or under tables. So many spaces and places are not accessible. Having time to process our experience, should I have held my hand at the door and politely asked if anyone could make room? What stopped me? The consideration that others may have hidden disabilities and…. awkwardness, apprehension. Not being prepared. I want to model confidence and encourage Norah to advocate for her needs, and I felt like a failure. Moving between floors, getting lunch. It was difficult and no one saw.
There is so much to life with a chair that I should write about when there is time.
The physical and emotional positives and negatives. Another glimpse I want to share arrived with an email this morning. Confirmation of a holiday we booked 6 months ago for Easter, with a paragraph in red that the pool facilities are closed due to a leak. Had been for weeks. Just over 9 days’ notice. Now I think this would dishearten most families, as it is a rural stay, but I felt my throat fall through to my stomach. Norah can’t physically do the same as other children, so swimming was the main activity planned for her days. It was pivotal. The site said call the travel provider, the provider said it was the site’s responsibility to notify us, telephone ping pong, and I get that things go wrong. But the reality for us, we don’t have the funds for holidays, and this is our yearly respite, bi-yearly actually as we didn’t have a holiday last year together. They take so much planning to meet the needs of the family, so much preparation. Travel navigation. Rearranging the multitude of professional meetings and appointments. ASD parents will understand. Our options were to be refunded and miss out (the disappointment and the routine change would be catastrophic) or go and have our youngest spend most of the holiday sat in the accommodation. If I am honest, I am fed up with inequality, of people not comprehending how much harder life is with children with additional needs. These battles, alongside the constant caregiving demands, wear us all thin sometimes. So, being off kilter after nights of no sleep with Norah and a day filled with hospital appointments and painful tests, I cracked. And hysterically sobbed down the phone. A fair while later on the call, we managed to change the holiday to a site we have stayed at before (so know the layout, the accommodation etc) and with a pool. 4 hours in the opposite direction of the country but I l take that. Half an hour of heartbreak and we found a resolution and I am so grateful of the help coloured with a shade of frustration.
The focus of this story, venting, and maybe insight, a reminder that we struggle, don’t have all the answers, and little things are often bigger, more challenging things for children with disabilities.
