Sunday, June 29, 2008

So this is the second post for today, not very common for me but I felt it was important enough to take the time to share. I know that a lot of people read our site and my good friend from Flagstaff, AZ told me (she is a post labor nurse) that her nurse colleagues have been using my entries to train their staff to be more sensitive to parents in crisis situations. For this reason, I do feel a certain need to help people understand our world and what it entails, what it means to go through this experience.

For that reason, I wanted to include recent experiences from other micro-preemie moms about what they have gone through with their now toddler babies. I do this to help you understand that in a case where you meet a parent with a child that appears to have a disability, the best thing to do when you don't know the situation is to NOT say anything at all. Discretion is always best, saying nothing about the disability is always best, by all means drawing attention to their differences is inappropriate. I know this seems silly but I cannot tell you of how many insensitive situations a lot of my fellow micro-preemie moms find themselves in where others are saying the incomprehensible.

Here are the most recent postings that circulated through our Yahoo! group (I have not included the child's names for obvious reasons):

I had a very unpleasant day at my daughter's swim class. She has pretty bad sensory issues and when she is overwhelmed she sort of moans and rocks instead of your typical toddler scream-fest. The class was to be limited to 6 kids and indeed it was. Six kids in our group along with 6 kids in each of the other gazillion groups in the pool. After about 5 minutes she started to moan and was clearly getting distraught because of the cacophony of sound, not because of the water which she enjoys. The woman next to me with her 2 year old says in her Carmella Soprano accent "Oh, I'm sorry, she's retarded that's too bad." I was pretty well shocked and asked her what she was talking about and she replied "well I've only ever
heard retarded kids make that kind of noise and act that way.
I took my son to Payless on Thursday to find some shoes to fit over his new SMO's (feet braces). The sales lady came up to see if I needed any help, which I did. I assumed she'd be familiar with their products and might have some ideas on what shoes would work for us.

So I showed her his braces and asked if they had any shoes that were wide or stretchy that might work.

Her response made my jaw drop to the floor: "I'm sorry but we don't
sell shoes for kids like him." I definitely let her off too easily because we were in a hurry. I said "You don't sell shoes for toddler boys??".

She happened to be pregnant and all I could think is she should be so lucky to have a "kid like him" because he is an amazing little boy.

I was going to complain to the manager, but she WAS the manager! I normally really like Payless and don't blame the company, this person just happened to be quite ignorant.

She was uncomfortable and just pointed us to the children's aisle where I had to dig through every box and try to fit shoes on him and I was not real successful finding a pair that will work.
I just wish people would think before they spoke, and be more sensitive to all sorts of difference. In a philosophical vein, reflecting on all the stuff that various members here have had to go through this past week, this world would be so much of a better place if it didn't promote so thoroughly the concept of blending in and masking differences and turning out cookie-cutter sameness, anyway. It's one of the zillion reasons I enjoy Sesame Street so much. They really do a good job there of teaching kids that all kids are kids---kids with wheelchairs, walkers, and those who walk; kids with glasses, hearing aids, lisps, who sign, etc; monsters are friendly, and not creatures to be afraid of, and just as sensitive as people; and that kids with all kinds of families, and those who are black and white and asian and all the colors in between play together.. I just don't know whether those lessons get lost because they're not reinforced at home (by some of the people you all have met this week who probably have kids), or on the playground, or in school and church or in the non-PBS awful TV that kids are allowed to watch. Anyway, sometimes I prefer my virtual Sesame world to the real world out there. But that doesn't stop me from hoping that the world could be a better place; it's just hard to make every moment a teachable moment (not to mention exhausting).
These are just a few situations of many, many that we share with each other every day on my Yahoo! group. I hope by sharing you will have the opportunity to reflect and think about what you would do in this situation or what you would say.

In saying all this, it would be unfair and unkind for me not to acknowledge all those in our lives who understand how life is difficult right now and who treat our boys with a great deal of love and respect, despite their challenges and differences. To the many of you, we applaud your compassion and hope that others will learn from it.

Love, Shane and Michelle

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