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Sometimes I feel guilty that my son is not “worse”

12 Sep

This may sound odd.  It sounds odd to me at least, and I am the one writing it.  Sometimes, when in the presence of other special needs parents, I feel guilty that my son is making good progress.  I feel guilty that my son’s condition is different to theirs.

I suppose this is maybe how people with normally developing children feel when they are around me – although, based on the constant boasting about their child’s most recent achievements, I have never gained this impression.  I may be wrong.  Maybe that is why people say a little too often just how cute Harry is, or how well he’s doing…

For more than a year, my son has been attending a local playgroup run by a special needs school.  It is a fantastic and diverse group – which makes it wonderful, as every child has things they can do well, and things they have trouble with.  Although I don’t compare Harry to other kids, it is difficult not to notice some very obvious differences, especially when around groups of normally developing children.  A pink frangipani in a sea of white roses, whilst beautiful, is very noticeable, as is a child who doesn’t walk or speak, amongst his peers who do.

When asked at playgroup how Harry is progressing, in general, I am thrilled to say he is doing very well.  However, parents have a tendency to ask about issues your children have in common, which can dull the elation and stir feelings of guilt.  For example, the mother of a little boy with a severe epilepsy disorder (Dravet syndrome) will ask how Harry’s going with his seizures, the mother of a little boy with eating and sensory issues will ask how Harry’s progressing with his eating (as he has issues with this), the mother of a little boy with autism learning sign language asks how Harry’s communication and signing is going.  When answering these wonderful ladies, a pang of guilt overtakes my pride and I feel terrible when I reply saying that Harry has remained seizure free for nearly three months, he’s improving with his eating, and he has learned two new signs since playgroup last week.

I know how it feels when your child isn’t progressing, and I don’t want to boast that my child is doing well when another child is regressing.  I do not feel sorry or pity for these ladies.  I do feel for them though.  I feel compassion. I feel empathy.  More than anything I feel proud.  Proud of their hard work with their children, proud to know them, and proud that they are doing their best to hold it together, day after day – that in itself is a huge and daunting task.  When you are struggling emotionally with your child’s diagnosis, delayed development, fears for their future, sleepless nights, gruelling therapy schedules, and all the rest – and on top of this have to stand up and be an advocate for your child day after day – it is tough.

Maybe it is not guilt that I feel after all.

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1 Comment

Posted by on September 12, 2012 in Uncategorized

 

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One response to “Sometimes I feel guilty that my son is not “worse”

  1. Carolyn

    April 17, 2014 at 9:50 pm

    Yes, yes, yes!! I get this so much! In the Down syndrome groups I am in, one of the key differences between Samara and around 70-80% of others is that she does not have a heart condition. (The actual statistic is 60% of children with DS will have a heart defect, but I think more of those who do have this problem are likely to seek out support groups). And so, I feel guilty that Samara does not have a heart defect! Never mind that she has a degenerative lung condition that is only slightly more common in the DS population compared to the rest of the world. Never mind that her hearing levels are much worse than the “common” hearing losses experienced by kids with DS. never mind that her feeding issues and aspirations/choking, are considered life threatening, and she may have to go to being tube fed. Never mind that there is a possible that her awkward gait, and constantly tripping over her feet may indicate a mild form of CP (she was 9 weeks early). I STILL feel guilty that she doesn’t have a heart condition!

     

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