Sally’s* young son Hamish* is not quite a child in a million – he’s more like one in four million.
Hamish has a rare chromosome disorder, 49 XXXXY syndrome. “He’s the only boy in New Zealand with it that we’ve found,” Sally told RNZ podcast Are We There Yet?
The syndrome causes intellectual disabilities as well as feeding difficulties that required him to be tube fed for over a year.
“He seemed to be a baby for so long.”
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Even now feeding is challenging and his balance and attention span have also been affected.
The initial diagnosis caused Sally to become severely depressed.
“The world did crumble and I isolated myself. I needed to deal with the diagnosis on our own before we shared it with friends.”
With help from Maternal Mental Health Services, Sally recovered and she believes access to counselling would be valuable for all parents of a disabled child.
However daily life continues to be challenging and Sally and her husband now try to keep routines as simple as possible.
“He’s not very good at transitioning from one place to another. It can take 20 minutes to get out of a building and into a car. Life is just slower with him.”
Clinical psychologist Catherine Gallagher said parents might fantasise about how their child would be during a pregnancy but the reality was always a bit tougher.
She said parents of a disabled child might need to grieve for the path they expected to take but it was important that they viewed their child realistically.
“To accurately look at who you have in front of you, means that you are then able to see them for what they are and not focus on what they’re not. This is really important for a child’s sense of self.”
Gallagher had seen many children with huge disabilities who enjoyed healthy self-esteem, “because their parents have found a way to get their heads around ‘Who have we got in front of us and how can we best facilitate this child having a good life ?'”
Likewise she had seen clients without disabilities who were “acing the world” but had “self-esteem the size of a gnat” “because they keep expecting more and they feel that who they are in the world is contingent on how well they do.”
Understanding and accepting a child’s particular needs allowed parents to cater for them more…
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