One of the things I quickly learned about becoming a parent is that it isn’t a glamorous role…a special needs parent and carer even less so.
From the days of having crowds of doctors and nurses asking to check how my c-section scar was healing I thought “Yep, my body, life and thoughts are an open book now”.
This is the case everyday in our appointments, therapies and phone calls where I have to state every problem we encounter, how to fix it, how we need help to fix it.
The system can save children like my daughter at birth, but they can’t necessarily continue to support them how they should – another thing I am quickly learning.
Well, they can, but it isn’t without a big fight and perseverance on our part.
I think part of it is understaffed departments, lack of funding, and perhaps an increase in children with additional needs.
You see everything seems to be about waiting lists, grants, money, permission from the people above (who even are they?! How do I get their job?).
When being assessed for new seating and waiting 3 months with not a word from anyone, the people responsible for the aforementioned seating are probably at home, with their children…who can sit fully unassisted.
They don’t see you in a heap on the floor in your front room because your back hurts so much from carrying your deadweight child up and down the stairs as they extend dangerously and you twist your back to try and prevent them bashing their head on a wall.
They don’t deal with a child’s very strong extension reflex that you could liken to a fish out of water thrashing to escape.
Seating is essential.
Equipment is essential.
It is an extension of my child – it is what she needs in order to maintain a fantastic quality of life and to prevent things such as scoliosis and hip displacement.
They don’t see you up at midnight and 4am to do an overnight pump feed change a long with meds and a nappy change as not to entirely soak the bedding (which inevitably happens literally everyday anyway hence why we own so many cot sheets!).
They don’t see you frantically making phone calls in the twenty minutes your daughter is allowing the TV to fully occupy her (and even so you appear by her constantly to wipe away dribble, help her cough, reposition her, untangle her from her giving set etc)…they don’t see your frustration when you get “user busy” displayed on your screen 12 times in a row, or how you leave a voicemail knowing that when they return your call you won’t be able to answer.
You set aside this phone call/admin time specifically to resolve issues and tick things off a list, awaiting a call back only contributes to your anxiety and makes your day even busier.
When you are leaving countless voicemails with pediatric secretaries you know that in a lot of cases they will go home to their “typical” lives not needing to acknowledge that the problems they see in clinic every 4 months is your life 24/7, we don’t get to go home from this, there is no break.
Our house has become an emporium of physio equipment, a warehouse of tube feeding supplies, a wonderland of sensory equipment and noisy toys.
You may ascertain from the tone of this post that I am feeling a little delicate, a little bit fed up, let’s be honest – burnt out.
One of the things I have always had is “generalised anxiety disorder” and this is a special needs parents nightmare – you see, I like to know when things will happen, I like to be able to control the situation, I like to have it in my diary.
I like to think of every possible outcome for everything, I like to be independent.
If things aren’t how they need to be I wont sleep, I will be weak, dizzy, shaky, over emotional, irrational and snappy.
This is not what I need and most certainly not what my daughter needs.
Tomorrow we have a TAC meeting (team and child), it will be our 4th one in amy’s little life.
At the end of the last meeting we had come up with a brilliant list of things that needed doing and I remember feeling so relieved and pleased that action was to be taken on the many things keeping me up at night.
6 weeks on, it's the day before the TAC meeting and not one of the needs have been met.
We need help applying for social housing – our house is simply un-adaptable.
We need a bed for Amy that she won’t get stuck in and need constant repositioning throughout the night.
We need bath straps for her bath lift that haven’t fallen apart so we can safely bathe her without hurting our backs.
We still haven’t had a ph study done to determine whether or not Amy needs major surgery.
It is enough that my anxiety symptoms are through the roof.
Recently the pharmacist from our GP phoned to let me know that Amy’s melatonin would now be issued by the hospital and not them.
The reason? Can you guess? Yep. Money.
Liquid melatonin is very expensive, they made a few mistakes with it too that cost them dearly (£180 to be precise).
They convinced me that it would be beneficial to the patient and assured me there would be no blips in getting it ordered.
I have since exchanged approximately 15 phone calls with the hospital just to find out how to order it.
It has taken 2 weeks but next week I get to go and collect a 6 month supply of melatonin.
I had a very similar experience with Amy’s prescription formula.
There are days I think I can’t do this anymore, but then you give yourself a little pep talk, sip your coffee, and you tell yourself “come on, you have no choice, this little person needs you to fight their corner” and you get back up on your feet and continue fighting.
Be it not for rude secretaries, inefficient professionals, funding, grants, miscommunications, waiting lists – this would be the greatest job in the world!
Notice by the way how I have barely mentioned appointments?
The admin involved for our children is enough for one full time job, and that’s without considering the appointments, being an actual parent and also being yourself.
These days, come night time we are too tired to indulge in any hobbies, we go to bed early.
It’s such a shame because the bulk of my exhaustion stems from my responsibilities involving admin.
It’s not just feed prep, drawing up meds, general chores, appointments, lifting Amy etc, it’s the mental toll it takes trying to be a secretary/chief admin of the household.
I also want to dedicate it to those few professionals that will work with you (not for you, not against you) and will do what they can to go out of their way and make your lives easier.
I also dedicate it to the people we do this for; our children.
Without them where would we be?
I am grateful to Amy for giving me this role (much as I whinge!) because it has taught me that if you care about something enough, you will do whatever it takes in spite of exhaustion, tears, everything.
Keep at it everyone, you’re doing great.
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