Additional Needs
The Monster We Live With
by Carolyn Voisey
on 4th December, 2023
I Am THAT Mum Now
If there isn't wheelchair access I am appalled and generally refuse to enter the establishment.
I have also become like a hawk with my checking for blue badges in disabled parking bays.
I am a stickler for people doing the right thing... not the ignorant or lazy thing.
I don't think I would ever get into a conflict over it, but I would be enraged for the rest of the day about it.
Amy is at that size now where she is starting to exceed the limit for a standard baby changing table.
I guess the clue is in the word - she is no longer a baby - what I need is a toddler changing table.
A changing table that supports a child that has a strong extensor reflex, sporadic unpredictable dystonic movements, and sometimes a little bit of a temper!
I have noticed that most changing tables carry a weight limit of about 12kg or 26lbs.
I wonder if this is the absolute weight it can bear or if they set it a little lower to cover their backs for in the event of an accident.
I noticed the firefly Space to Change campaign a long while ago and have become an avid supporter of it.
We no longer exist in a world where a wheelchair user should have to struggle to access the community!
It seems a huge shame to me that so many families have to cut their days out short due to inadequate changing facilities.
I can see it from both sides though. If you look at it objectively... on one hand you're thinking... well a business would need a sufficient amount of money and space to cater to these people... these people who in their eyes are a minority and could possibly go elsewhere.
But through my eyes... the eyes of a person who wants their child to be able to go anywhere without having to panic about the inevitable nappy explosion... I want to know that provisions are in place for us.
In some ways, I suppose a lot of the world is blissfully unaware of our struggles.
It isn't until you are in our position that you start to see how hard it can be to simply go to the zoo, or even just the shops.
The amount of preparation, packing, lifting and assembling required can sometimes be enough to not ever want to leave the house. But this isn't an option.
At the moment our gastro issues are pretty complicated. For the last two years since Amy's fundoplication surgery failed (it is an anti-reflux procedure where the top of the stomach is wrapped partially around the bottom of the oesophagus).
We have since been for PH studies, surgical consults, gastro appointments at different hospitals, different formula and medication trials and so on.
It has left us in a situation whereby we don't know how her feed will be tolerated.
Sometimes she will retch violently and be sick; but mainly (TMI sorry) she will have an unpleasant nappy that may involve an outfit change and sometimes a bath.
At the moment the suspected culprit is gastroparesis, but we aren't sure. For now we are stuck on 24 hour pump feeds.
We are awaiting a GJ button trial (the gtube is placed by a radiographer into the intestine to bypass the stomach and hopefully aid better digestion).
Until this happens, days out are met with anxiety and uncertainty.
We take many spare outfits wherever we go and hope for the best.
Without this issue we still have sensory and mood issues and definitely equipment issues too... but wouldn't it be cool if we had one less thing to worry about?!
Everywhere Amy goes now (respite and nursery mainly) hoists are being used...all indicators pointing to the fact that our little girl is turning into a somewhat tall and hefty lump of cuteness.
I am delighted at how she thrives and grows but if my back had a voice it would be groaning and crying!
I have now a huge respect for those businesses who recognise our struggles and who have worked hard to ensure that EVERYONE is included and can take part in days out safely and with dignity.
For now we just about get by using the baby changing table... but I am dreading the day I start to unroll a yoga mat on the floor for a nappy change.
With this will have to come antibacterial sprays and wipes to ensure the most hygienic change possible but it does ache my heart to think how my back will feel doing these lifts and how unfair it is on my daughter.
