This blog post was written quite a while back (probably about a year ago maybe), during a time when we were really struggling with some of the challenges Ori was having with her health. Quickly thrown together in the Notes app of my phone, then forgotten about until now, I was reluctant to share it. I hate saying anything negative about additional needs parenting (there are enough challenges for those like Oriana already), and didn’t want to post it at the time… but also no parent’s life is smooth sailing through all seasons and I don’t want to be dismissive of the isolation that you can feel when looking after a child whose needs can be quite different to their typical peers. If you have read through my other blog posts, you will know that I usually have a much more positive tone, but in the spirit of honesty and vulnerability I will also share some of the equally valid feelings I have on other days.
(Also, just to update you - we are in a much better place since Oriana had her surgery and winter is giving way to spring; Oriana’s health already seems to be better! You can read updates on her last year here, and surgery updates here, for reassurance!)
Buffer:
verb
lessen or moderate the impact of (something)
Bridge:
Noun
something intended to reconcile or connect two seemingly incompatible things.
verb
make (a difference between two groups) smaller or less significant.
It is exhausting - I get so little “off” time.
As long as I’m with Ori, I’m alert.
Some of these things are probably “me” problems:
My fight or flight response runs a little too close to the surface for life to be relaxing,
I'm happiest when taking action & getting things done (this was once described as a “coping mechanism”),
My brain is always searching for information & I think of hundreds of questions a day that I want a search engine to answer for me.
…So maybe I should try & go against the grain of who I am & learn to “take the scenic route”, but I haven’t found life as a parent of a child with additional needs quite that simple?
As with any child, routine makes our life easier. But on the occasions that a high temperature/sudden bout of vomiting/a concerning wheeze on her chest interrupt our schedule, & tip our week upside down, it is exhausting:
She doesn’t acknowledge or respond to physical sensations in the way other children may. So if she hurts herself she may not cry until a while after, & then she won’t be able to explain to me what happened or what hurts.
I keep an eye on her so I can see what may have happened if I find her crying.
She doesn’t always understand (or can’t communicate the difference between) being hungry/ poorly/ needing the toilet/ physically having hurt her stomach,
I need to be tuned into her enough to know what it is that she needs & then meet that need.
If we try & walk together she will want to pull away from my hand & go in the opposite direction of where we should be heading, even if that means into danger.
She won’t follow instructions such as “stop” or “wait for me”.
Instead I need to remain physically close or hold her, always assessing what our surroundings are like.
Her little legs become so tired after only a short distance, meaning I can’t venture out without our large pushchair & planning “wheel friendly” routes.
Whilst I see other children her age walk for miles, independently exploring fields & hills, I am her access to the world & she needs me close by. She can’t navigate the steps & curbs well - she needs me to hold her hand & help her balance.
I stay by her side to help her try & catch up with her peers.
When she sleeps at night I remain on alert; hearing her gasps for air, coughing & choking, restless in the other room. I take it all in amongst my disrupted sleep, my dreams often vivid & anxious.
Over the days & weeks I monitor her weight, energy, breathing, immune responses & keep a constant mental log of what is improving/getting worse. I then have to fight to be heard & validate this to health professionals who tell me this is “normal”. I stay up late at night researching ways to support her health and development, as professional resources have long waiting lists and often feel like they don't have time for us.
At every meal time she needs her food fed to her as feeding herself is too much, & we walk a fine line between wanting to give her nutritious dinners vs. just getting her to eat at all - even if it is the same thing she has had for the four nights previous & is nothing more than beans & a waffle. Any calories are better than no calories surely, and a happy meal time is better than a child who becomes averse to eating? …Or have I now made it impossible to ever move past beans & waffles? Another thing for me to research on the forums & internet searches when she goes to bed tonight…
I keep a constant eye on her as she plays, to see if her congestion means her face needs cleaning yet - it’s rarely more than 15 minutes before it does. I stay close by during playtime with her friends, to prompt her to use the toilet as it’s likely she won’t think to ask.
I can’t relax into thinking “if she needs something she will tell me” - I have to think of her physical needs at least 3x more than I think of my own.
When adults or children approach her, I stay close by to help her understand their questions; sometimes signing, sometimes changing the wording to be just key phrases she will understand. Then I help her answer back by modelling a response or explaining her sign - because I want her to be included & seen & understood, so I stay close by & alert for interactions from others.
I keep an eye on her curriculum, and then try to prioritise supporting this learning at home. I know it takes her longer to pick up some things, but I don't want her to be left behind because I am too tired to put in the extra effort at the end of her little day. Again, I stay up late researching how to differentiate activities in a way that she will get, finding educational games, and printing and laminating phonics and flashcards. I don't want to let her down.
And then whilst my body is on high alert from all these things (constantly scanning for the next thing I can do to bridge the gap for her between where she is & where everyone else can be found, in a state of needing to move quickly to react & keep her safe), it is juxtaposed against her requiring more patience;
a long wait for her to think & then answer me,
a slower pace as we try to move from A to B with her low muscle tone,
more time given to stop her activity & move onto the thing she has been told we need to do next,
more time repeating the same things over & over as they are harder for her to pick up,
more time cleaning up accidents as she struggles to understand what her body is trying to tell her.
And inside me there is this screeching of brakes as I try to meet her at her pace, whilst my mind & heart rate are racing from flying around the room making things accessible & safe.
And amongst it all I am grateful for her. I wouldn’t have a day without her.
I think she is the most beautiful, perfect little thing.
But having to be both her buffer & her bridge; slow life down for her whilst trying to catch up with everyone else… it is exhausting.
And having the energy to explain all this to someone who hasn’t lived this way requires energy I rarely have.
This isn’t “just a phase”, or if it is, it is not a short term one.
This is the life of parenting a child with additional needs.
This is with the support of my family, a great specialist preschool, an inclusive church, an understanding employer… & it is still draining & isolating at times.
There are people I know with far less support, & with far more challenging needs of their children. And that is why for so long I didn’t want to articulate how I felt.
But my experience is still a valid one, & one I know other parents in my situation will relate to, & it may help parents looking in on families like ours to understand why life can just cost us so much sometimes.
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