Ugh. I want to be kind here. I know people mean well.
But, I’m sick of being patronized. I’m sick of people coming into my home and instructing me on how to do things that have nothing to do with May or, are simply, none of their business.
Yesterday, two social workers came to my flat to check May’s special chair. They made all kinds of adjustments to it that were very helpful. But, along the way, they made a multitude of other, unsolicited, suggestions.
This was their first visit. They knew nothing about May. They even tried to get her attention visually and when May didn’t respond, one said those famous last words that made me immediately lose all respect for her, “Ah, bless.”
“Ah, bless,” is just another way of saying, “Oh, you poor little girl who can’t…” What they should have been saying is, “Oh, wait! That’s right! May can’t see. Maybe waving my hands from across the room won’t get the attention of an almost blind child.” Except, they would have had to read her file to learn that bit of information.
Then, while adjusting May’s chair, one of them had the audacity to suggest, “You need to make sure you clean this chair more frequently.” I looked at the chair. I could not see a spec of food on it. Afterwards, I noticed a drip of blueberry yogurt from the day before had dribbled down one of the bars in the back.
Now, I ask you, parents of children under-3, disabled or not, how clean are your high chairs? If there is not a dribble or splatter of some kind, lodged somewhere on your chair, you are a better parent, or at least a cleaner parent, than I.
The difference being, complete strangers don’t come into your home and tell you to clean it more.
Later, I pointed out to them that I was moving* because I thought they may need our new address. “To a ground floor flat?” she assumed (that’s first floor to any Americans, and first is second floor).
When I said, “No, a first floor flat,” the two social workers exchanged knowing glances and I found myself sputtering excuses to them about how difficult it was to find a flat and how restricted our search was and how long we’d been searching…
Why am I making excuses to two total strangers about where I choose to live?
Finally, and this is a request to anyone working with my family, my husband is a good father. A very good father who is as capable of looking after my daughter as I am. When he comes home from work and finds you in his flat, holding his daughter and you are a complete stranger to him, you might try to introduce yourself to him.
What these two social workers did, which is what almost every other therapist and doctor and care worker does, is ignore him. They actually carried on a conversation with each other, barely glanced at him and when he spoke they ignored him completely. He is sick of it and so am I.
I am only grateful that May is older now. When she first came home from the hospital, I had three or more of these visits a week, as opposed to three a month. Good riddance.
*Yes, you read correctly. After three months of searching, we found a new flat. I’ll post on that later.
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Ugh is right. I am so sick of professionals not reading Sebastian’s file before we meet them. I totally chewed out his resident neurologist and it definitly helped, he went and read the file before completing our appointment. Happy to read you found a flat, we have to move in November, it will be a challenge. Good luck!
As Seinfeld said: “Other people – they’re the worst.”
It’s one of the worst aspects of having a disabled child: having to deal – constantly – with other people. Particularly when they’re of the type you describe.
That said, I despise everyone we have to deal with over Maggie’s care, however nice or competent they are. I wish they’d all just f**k off.
Good luck with the sleep experiments, by the way. I think we’re going to have to join you. I’ve been up with Maggie since 11.30pm. It’s now 3.30am and she’s still up there, not sleeping. I wish this was atypical. It isn’t. I’ll be keeping an eye on your endeavours with interest…
I am a Social Worker by trade – all I can say is this is not acceptable. The fact that so many act this way is a constant source of irritation to me, the stories I could share! I know that you have enough on your plate to deal with but should you want to add another thing and take them to task you would be perfectly within your rights. It is appalling, they should of course include your Husband and keep to the task in hand. If anyone saw my highchair my daughter would probably be subject to child protection for gross neglect! Sorry your family have to put up with all of this.
Thanks for this Abs – nice to hear from a social worker who is irritated by this as well.
Ugh! Eleven years later and I still get this. My son has cp and optical atrophy (aswell as a list of other stuff). They still ask him to look at things. One bright spark drew a tiny smiley face for him and was beaming at his own brilliance! Also complete strangers in the street telling me he’s a gift from god and bestowing me with their wisdom..ugh!! Ps I love reading about May and her wonderful progress. Shes stunning well done.
We’ve had 13 years of this too, you have my empathy and sympathy. I have to justify everything i do to professionals, and strangers a like, it really gets me down.
Love visiting your blog btw, Jo xx
Stacie, this makes me crazy and angry. How dare they come in not knowing May and having at least looked at the damn chart. That is their job at the very least in my opinion. Sorry this happened to you and your husband. How rude they are. Can’t wait to hear about your new place.
Stacie,
I have a three year old. Most of my house is filthy, and it probably would be anyway. These people are idiots.
Eils
x
My daughter’s 18 months and try as I might (and sometimes I don’t actually try that hard…) the house is always a mess. I think it comes with the territory. I don’t even want to think what comments they’d make about her high chair. I wipe the tray down after each meal, but I’m sure there are spatters galore on the sides. It’s inevitable!