“Our greatest glory is not in never failing, but in rising up every time we fail.” ~Ralph Waldo Emerson

Once again, summer “camp” for Pearlsky is not what it should be. There is a new “Special Education Coordinator” for the school district and she just started. We spoke the other night … I found out she has three kids, has been in the district as a special ed teacher for over a dozen years, and has a brother that was on an IEP. She seems to really understand and have empathy, we will see. After our long conversation, I wanted to clear up one thing that was said … so, hence, an email. I really need to get a life …

I put a good amount of thought into my voracious advocacy of Pearlsky as well as my responses to situations. In general, I have a good awareness of where I come from, who I am and how I am perceived. That is not ego, just self awareness. Most of the time I like what I see. Not always.

I was thinking about our conversation yesterday and just want to clarify one part. Normally I would not, but you do seem to care, and with what you shared, I believe you have empathy on many levels. So this email is not for anything other than sharing with you a bit more insight into life around here. Feel free to ignore …

You did not seem to agree when I was saying how I feel I failed Pearlsky with regards to the summer program. Obviously you cannot comment on how I feel, I assume the comment was that you do not believe I failed her. Please understand I fully understand the type of parent I am, the quality of parent, etc. I have a bizarrely popular blog strictly about Pearlsky and me and the stuff that goes on and get plenty of feedback. I am told often about my parenting skills from all sorts of people, from the hospital, school, neighbors, family, etc.

But, yes, I have failed her when it comes to the summer.

Try this … you mentioned you have three children. I assume they have various interests, baseball, art, swimming, (driving mom crazy …), whatever. Most parents put a lot of effort into summer stuff to keep the kids happy and busy. I helped an employee of mine a few months ago find the appropriate swimming camp for her son.

So, for argument’s sake, lets say you search for an art camp for one of your kids. You look around, ask around, and find a camp that will make her (?) happy and have lots of art things to do. You send her off and the first day she comes home … pale, lethargic, dehydrated. You ask what happened … she says no one fed her nor let her drink. Then you come to find out, all the other kids have art projects of the kind your daughter loves, but for reasons no one will tell you, your daughter is not allowed to do art. Do you send her the next day? Do you put her on that bus with a smile and tell her you love her?

So you send her the next day, they do feed her, but still no art, she needs to just sit there and hear about the others. Then the next week she comes home limping, not feeling well. Turns out, they don’t let her do stretching exercises or running. No one will tell you why. Still no art. No one will tell you why. Do you keep sending her? What do you say to her? Are you being a “good” parent in your own eyes?

Are you failing your daughter?

What if your daughter could not tell you this was all happening. You had to figure it out … and no one would tell you why they are doing this. AND YOU STILL SEND HER? And everyday you try to guess how she was left out, or neglected, or not. She cannot tell you, you try to look in her eyes and understand.

What if the first day of adult daycare the elderly parent you so carefully put into the program came home … etc.

Just like N is failing in running the program this year because he is leading the program, even though he is failing because the PT and OT “misled” him, the nursing staff “deceived” people, etc., I need to say that he is failing because it is HIS program. Those that need to support him are not. He is failing because he did not take Pearlsky on trips he claims to have planned specifically for her, he is failing because he did not provide her PT and OT, he is failing because he did not make sure she was fed. It is his program and he failed. “SD, how was the summer program for Pearlsky?”

In the same vein, I have failed Pearlsky.

I don’t have normal kids, probably never will. Right now I am solely responsible for two severely disabled ones. At home, it is Pearlsky and me. Maybe I see life differently, maybe I’m wrong … just doing the best I can with I what I have. I do not doubt my skills as a parent, and advocate, or a loving father … but with regards to Pearlsky’s summer, I failed her. And that hurts. Big time.

(no cc’s, feel free to share or not)

I am NOT saying I am a failure, etc. Purely, in regards to finding a proper summer program, I failed. Ultimately I am the one to put her on the bus in the mornings.


  1. By Claire


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