Sunday, September 28, 2008

You Know You are The Parent...

Tammy, of Praying for Parker, put up a list of how you know you are the parent of a child with special needs here

I thought I'd put the rest of my list here, since as soon as I clicked Submit Comment over there, I thought of half a dozen more things to add.

You know you are the parent of a child with special needs when:

You are pulling a sled with your one year old, your three year old and your five year old, all giggling... the five year old is in the middle with the one year old held snugly in her lap, and the three year old behind her holding on tight to make sure they don't fall off...
and a stranger walks up to you and says, What darling twins you have! And the baby is adorable!

A new doctor asks you where you took your medical studies.

At appointments where a form wants you to list the medications your child is currently taking, you have your child pull out a file card, laminated in clear packing tape, that she carries on her person at all times, and ask the receptionist, "Can you make a copy of this to attach to the form? It'll take less time, and you'll be able to read it much easier than if I copy it out longhand." And you have them copy both sides because the other side has her name, and 'current as of...' with the most recent revised date.

Your child forgets to take her purse with her to her program one day. You spent all day half hysterical because what if there was an accident, and your child was not able to tell the paramedics about her special needs and what drugs NOT to give her? You decide to sign up for Medic Alert, and the relief you feel when you clasp the bracelet around daughter's wrist is all out of proportion to that small action.

You call your doctor on a weekend, and leave a message with the answering service. Twenty minutes later your phone rings. It's one of the partners, and he says, "Tell me what's up." You list the symptoms, cough productive of green sputum, temp of 99.2F, lethargy, whinyness and say you think your child needs an antibiotic before this progresses to bronchitis. The doctor asks you what antibiotic your child responds best to, and then after you tell him, says, "I'll call it right in."

You know the phone number of your pharmacy by heart. And know the phone number of your PCP office by heart too.

You call your primary care doctor, sounding worried, and the conversation goes like this:
Me, "I don't like the way her cough sounds. She needs to be seen today, can you get her in?"
Nurse, "How soon can you get here?"
Me, "We can be there in twenty-five minutes."
Nurse, "We'll squeeze you in. See you when you get here."
*note* Our primary care doctor has Sick Call in the afternoon, to take care of people who need to be seen the same day. You have to take whatever doctor is available, but that's ok because all the doctors in the practice know your child. Sometimes Sick Call is full and you have to wait until the next day, but if it's really urgent they'll squeeze you in.

Your child lies dying, much too young, and for a moment, amidst the terrible pain of it all, you mind is filled with thankfulness that the doctors were able to help her hold on until her sisters could get here from the opposite coast, and from another state far away, so your daughters can all be together again for a little while longer.


Tammy and Parker said...

Oh, yeah. You are one of us. A Mom who loves a child with special needs.

I can so relate to your post.


SeaSpray said...

What a moving post. She was blessed to have such a loving family and I am sure as you said... you were blessed by your precious daughter.

I worked for SCARC for a year back in 85/86. I worked as a residential assistant in a group home and then about 9 months later went to the office working as an assistant to the community service coordinator for our county.

I learned so much in both positions. I enjoyed my interactions in the group home as well as working out in the community with individual families.

I left because I decided I wanted to work in the hospital.

I think the most valuable life lesson I learned through that experience was how we healthy people take so much for granted. Also...that we underestimate the capabilities of our children.

I should post about this experience sometime as it may be beneficial to someone.

Thanks for stopping by my blog.

Welcome to the blogasphere! :)

Hope you don't mind but I am blogrolling you. :)

Ann of the Incredible Gift said...

Tammy - *hugs*

SeaSpray - Thank you very much for your comment. I would love to read about your experiences with SCARC both in the group home and in the community.

My daughter wanted to live in a group home, with her friends, but there was a long waiting list. Then, after visiting with her friends a few times at their homes, she decided she liked living with us.

I'll be visiting your blog to read more. Thanks for the welcome. I don't mind.