Sad to See it End

This is the first year that I have been sad to see school end for Ashley. Really..can you believe I just made that statement???



Ashley's teacher is wonderful. She is the first teacher that has ever - EVER - taken a real interest in learning how to effectively teach Ashley. That teacher has also decided to pursue a Masters degree in Reading and Literacy with a focus on students with deafblindness.

Whoa! Sounds almost like the Twilight Zone, or like maybe I am caught in a dream.

The changes in Ashley have been monumental because of this teacher. And, the high school Ashley attends is very inclusive. Yesterday, the PTA gave out tee-shirts to the kids that had the words, "J.R. Tucker, Henrico Countyis Best Kept Secret." And it really is that.

So thank you, Mrs. Marsh. Thank you to all the teachers and staff who have made a difference in Ashley's life. Thank you to the clinic nurse and staff for taking such good care of my daughter this school year. Thank you to the administration for the support you show your teachers and staff, and for knowing personally who Ashley is. I know in a large school that it must be difficult to know all the students, but somehow you make it happen. Thank you to the bus drivers and aides. And thank you, other students, who called Ashley your friend.

We will miss you all, but look forward to September!

Breaking Out the #2 Pencil

This seems to be the season of surveys.

I’ve gotten one from our state’s program that supports students with deafblindness. They wanted to know what they could do to help youth between the ages of birth and 21 who happen to have deafblindness. That survey took me about 20 minutes to complete, and I’m betting my answers won’t be well-received.

A second survey arrived, this one from my community service board. The community service boards provides case management and other elusive services to people with intellectual disabilities. That one took me about 15 minutes, and again I’m betting my answers won’t be well received.

Then came the survey from my oldest daughter’s day support program. Of all the organizations that purport to provide support to one of my children, the day support program does seem the most interested in the clients’ and client family opinions. Over the years I have noticed positive changes.

Finally, my school district sent home a satisfaction survey. Each one of my children who are still in the public school system (4 of them) brought home the same ‘circle the most appropriate answer’ four page survey. Parents were told to return the survey within 15 days, but starting on day 5, we got phone calls, notes from teachers, and brain-washed comments from our children about returning the survey. I imagine a computer will read the responses and spit out data interpretations.

I appreciate that all these organizations are asking for my opinion, but I wish it were a little less structured. How about sitting down with me, or calling me on the phone so we can just chat?

An organization that provides post-adoption support services for my family conducted their satisfaction survey that way one evening this week, and I had a much better feeling about the whole process. Talking to a real person – a person whose name I recognized – was much better than filling in circles with a number 2 pencil.

I’ll just wait and see which, if any, of the organizations does actually make some changes….

I Am The Mother

If you are fresh out of college with a degree in education, social work, medicine or something similar, please do not pretend to understand my child’s needs better than I understand them.

If you have been a practicing professional for many years, and your practice has included children with special needs, I am interested in your advice and opinions. However, the ultimate decision on how to raise my child rests with me.

Just because you have a cousin who has a child with Autism, you do not know what is best for my child with Autism.

If you have raised no children of your own, don’t act like you know how to raise mine.

Unless you plan to support my child as an adult, you have no say in the choices my child and I make concerning his/her future.

It’s kind of you to try to understand the worry, the guilt, and the all consuming love I have for my child with significant special needs, but you really and truly cannot understand. Please do not judge me based on your limited understanding.

Just walk beside me – hold my hand when I need to feel someone’s touch – hug me when I am down – cry with me when I am overwhelmed with worry.

Don’t lecture – don’t judge – don’t pretend.

Rejoice with me in my child’s every accomplishment, no matter how insignificant it may seem to you.

Respect the choices and the decisions I make. Respect me. Respect my child.

I promise I will do no less for you.