1. We Spend Far Too Much Time In Hospital.
We have hospital appointments in several different hospitals for my 2 disabled children, plus emergency A&E visits where my baby, more often than not, is admitted for the night. We have had so many hospital admissions, all the children’s nurses at the hospital recognise my baby. They know her bedtime routines, what brand of formula she likes to drink, the lovely people who bring round her food know exactly what she likes for breakfast and that she’d rather eat a cheese sandwich than a cooked meal for lunch.
2. Life Can Be So Isolating
I once had a conversation with some friends who all had children of similar age to my then 3 year old. They were all saying what their child’s latest achievement was. Little Violet had started rock climbing lessons, Philip was reading perfect sentences, while Olivia was starting hockey class. I fought back tears during that conversation as my contribution of “Callie ran for the first time today” was met with silence and then the conversation moved on to how Tarquin’s spelling was near perfect and how Peter could draw excellent trains. They just didn’t understand where we were in life, and as a consequence I ended up distancing myself from those friends and there were many that distanced themselves from me as they didn’t know what to say, or how to act around us.
3. I Am Judged For Everything I Do
I am judged for my 6 year old having an autistic meltdown in the middle of a supermarket. I am judged for not disciplining her when she shouts at me out of frustration. I am judged for encouraging her to try one more time with things she finds difficult, and helping her too much with things that other children her age find easy.
I am judged for helicoptering my 15 month old baby and also for not watching her closely enough. I am judged for continuing to give her a bottle and formula milk and for giving her a dummy. People don’t understand I need a way of soothing and keeping her calm in the strange hospital beds. As the parent of a disabled child I feel there is always so much more to be judged for.
4. There Are So Many Hoops To Jump!
Currently my 6 year old has been lost in a maze of red tape. She has a verbal diagnosis of autism but we don’t have the official written diagnosis. I’m waiting on her old pediatrician to send me a report so I can send it off to the team in our new area, so she can then be accepted onto the diagnostic pathway. It’s a real headache. I feel like we spend most of our waking day jumping through various hoops.
5. It’s A World Of Unknowns
I don’t know what’s going to happen in the future. I don’t know if my 6 year old will live independently or if my baby will grow out of her seizures like well-meaning friends keep telling me she will. I don’t even know if we will make it through the week without a seizure that will require a hospital admission or a meltdown so large it will throw our entire week off. I don’t know what the future will hold and for someone who likes planning, that really sucks!
Through all the downs the ups make it worth it. Seeing my child achieve something other parents just take for granted is a privilege. For example, last year Skippy John visited my daughter’s school, jumping is something that’s really difficult for her. Her coordination has never been great, she didn’t run until she was 3 and only jumped with both feet off the ground a handful of times. At the end of the day the parents were invited to watch what the children had achieved and I wasn’t expecting much. I thought maybe she might control the rope or just mess about on the side-lines but I sat shocked watching my little girl front and centre use a jump rope for the first time! I’m not ashamed to say, I was a complete mess! At the other end of the disability scale my baby is the happiest child around. Despite having so many blood tests done her veins collapsed when she was just 6 months old, she was still full of smiles for the nurses. Her attitude makes the dark days and the lack of sleep worth it. There have been countless times I have been astounded by what my children achieve and their attitudes to life.
Being the parent of a disabled child sucks. It really sucks. But it is so worth it.
Having four children including one with autism and another one with suspected epilepsy is exhausting by anyone’s standards. Given this fact, it is surprising how much Leoni manages to do in addition to the (not-so) simple task of raising her children. Over the last ten years, Leoni has worked as a child minder, a cake decorator and baker, and as a carer. Leoni and her husband recently relocated to the valleys of South Wales and now home educates her school age children while sharing her family life in her daily vlog