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.