An Open Letter from MomKwake…

To the neighbor, who returned my kindness of holding the door open when she was laden down with shopping, with the comment… “I am so sorry for you. THAT child!” Do you know that we had been having one of our ‘good’ days? Do you know that after I politely explained autism to you I went inside my apartment and cried…and cried…and cried some more? But do you know what PanKwake said to me when she overheard what happened? “Don’t worry, Mommy, just ignore it.” I smiled and explained that was not always easy and the Wise One replied, “When kids make fun of me, I turn it into compliments.” So stick that in your pipe and smoke it.

To the mean, lazy and incompetent pediatrician who told me that I “did not know what it was to have a special needs child.” The same woman that I overheard tell a colleague she could not be bothered with continuing education on autism…shame on you. How many children like PanKwake did you let down in your career?

To the woman at the bus stop who commented that my child was what was wrong with this country today. I did a fairly good job telling you the way of it when I told you that PanKwake had epilepsy and had seizures every night, that she woke up tired and then faced a too long day at school. Back then we did not have the right to use the A-bomb, but still I asked “what’s your excuse?”

To the Special Educational Needs Coordinators…the one who spent one hour with her and said… “She will catch up.” She has not, in fact she has fallen further behind her peers…you could have provided early interventions that might have changed that. To the one that saw her almost every day for a year and never once mentioned the A-word despite our pleas for answers about what was different with our daughter…shame on you too. And shame on the education system that fails thousands of children with autism…fails to diagnose them, fails to protect them from bullying, fails to help their families cope better.

To the woman to the street who said, “What’s a big girl like you doing in a buggy?” I remind you of what I said then…”Do you think that parents spend hundreds of pounds, use their energy to push their child even when their backs hurts and put up with rude comments like yours because our child is too lazy to walk? If you see an older child in a buggy, it is for a reason. So next time think before you open your big mouth.”

But lest you think the world is always such a bad place for us…THANK YOU TO…

The wonderful nursery manager who noticed that PanKwake was not like the other children. You honestly did your best to help us get the early interventions that might have helped. It is not your fault that the ‘experts’ would not listen to those who knew PanKwake best. If she could still come to your nursery, I would be happy…it is where she belongs still.

The epilepsy nurse who listened to me pour out the painful story of that pediatrician and simply said “sorry” you became our champion and we will miss you so much.

To the wonderful professionals of the Neuro Developmental Team and Children’s and Adolescent Mental Health Services…when we came to you, for the first time we felt listened to and respected. You deferred to us as the ‘experts’ on PanKwake. You have no idea how much that meant to us after everything that had come before…even though we have tried to tell you often.

To the little girl in the park who sacrificed time with her friends to play tag with PanKwake when no one else would…you are an angel, never lose that. And to your mother, job well done.

To PanKwake’s carers…you are such a blessing. Knowing that you will be here soon gives me strength to go on sometimes. And it is not just that I can trust you with her, but how much she genuinely looks forward to her time with you…that says a lot.

To all my friends who listen to me…laugh and cry, moan and complain, boast of all the little things that other parents just take for granted…thank you too.

Life like autism is a mixed bag of the worst…and the best. But it is what it is and we go on.

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