Category Archives: Development

Prime Minister

Antoni asks me out of the blue: Do you know what “Prime Minister” is?
me: well, do YOU know  what “Prime Minister” is?
A: I know.
me: so, what is it?
A: It is too difficult, you would not understand.
me: Well, maybe you can try.
A: No, I would be 15 years old by the time I’m finished explaining it to you.

10 min later, Antoni randomly comes up to me  and says: well, first is voting and …

1% for Antoni in 2016

This post is available only in Polish.…

Mum’s musings

It has been six years since Antoni was born and this blog was started. In the beginning, the blog was to thank those who supported and helped us. We did not have much time for individual contact with each of you, but wanted you to know what is going on.

After six years Antoni does not have the peg anymore, sleeps well through most nights (and so do we); he speaks and communicates his needs (to some extend), he walks, …

independence, already?

On Wednesday afternoon I was standing by the side of the road, impatiently waiting for the arrival of the school bus … I was envisioning Antoni running straight into my arms telling how much he has missed me … but instead I received casual “hello” and we proceeded to review the content of his backpack … what a disappointment … mom’s services are no longer required?

Antoni had been away for 3 days on school residential trip. He is the …

who is bilingual

2016-04-16-klasa0B-8 Although being born with Kabuki Syndrome brings a lot of challenges, you can read the recent assessment here, we think he is doing quite well by managing two schools. Antoni is attending UK Special Education School during the week and Polish Saturday School

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Psychological Assessment

Below is Antoni’s psychological assessment, which we have recently received in Poland. It is very accurately reflecting Antoni’s current abilities.

General information:

Antoni is 5 years and 9 months old, he is fluently bilingual. Antoni was diagnosed with Kabuki syndrome, which symptoms include, among others: the characteristic dysmorphic facial features and hands, excessive joint flexibility, reduced muscle tone, hearing loss in the low to moderate, myopia and astigmatism, gastro-oesophageal reflux, loss of lordosis, growth hormone deficiency, hypoglycemia, hypospadias, hypogammaglobulinemia and …

I am sorry. This is rubbish.

At home we try to speak Polish with Antoni and usually he plays along. Sometimes he would talk to himself in English during play, or use English word if he does not know the Polish equivalent.

We are playing with Antoni (conversation in Polish): I draw shapes on paper and apply glue; Antoni sticks pieces of colourful tissue paper inside the shapes. The tissue sticks to his hands and clothes. Antoni tries to remove the glue and tissue off his …

Question Time

Antoni is going through the question period. He averages about 400 a day by Daddy’s account. Most of

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them starts with “Why”. …

Christmas, Santa and dilemmas

The statementing process continues.

We have received some feedback/reports from professionals involved in Antoni’s care. I think the most difficult to read was the report from Educational Psychologist. The EP has performed the BAS3 (British Ability Scales, Third Edition) test which tests the level of intellectual functioning. Antoni overall score was very low (0.3 percentile). We were cautioned that the tests for children younger than 5 are volatile, hence the results might not reflect his true potential. Still, we were …


It is again the time of the year when we are due for the review of Antoni’s Statement of Special Educational Needs. We can probably identify with many other parents of children with special needs who get goose bumps when they hear word STATEMENT.

Despite great support that Enfield Parent Partnership has provided to us it was one of the most challenging battles we had to fight for Antoni.

So here we are again, a year later from the initial …

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