Friday, November 16, 2007

Response to a reader...

This post is aimed specifically at addressing some thoughts brought to my attention through a recent comment on this blog.
“i notice the ommission of any contact with an ASL specialist or a Deaf individual - just wondering if u forgot to mention that or if this expertise is not considered a part of your warrior plan?”

(Referring to the sidebar)

The battle plan so to speak is a dynamic document, one that is always changing to reflect the barriers Ethan has overcome. ASL has been an integral part of the plan from day one. I don't mention it in the sidebar, for no particular reason other than we don't have any "experts" working with him in that area. Unless you count "Signing Time" dvd's, which are life-changing for some of the kids that I know.

We don’t have any contact on a regular basis with a specialist or a Deaf person. We used to have an ASL interpreter (who became our friend) visit our home once a week to teach us, but she has been traveling most of the past year and was just home briefly before leaving to travel more. We live in a very small and geographically isolated area and have to drive significant distances for nearly all of Ethan’s services. There simply aren’t deaf people here. We’ve only heard of one other deaf person and he is now a sophomore at NITD. His parents are hearing and we’ve yet to meet them – even though I hope to someday learn from them as they raised their son with sign.

Ethan signs quite a bit (his vocab is nearing 200 words now) and actually has an affinity for ASL. We absolutely encourage it and are inspired by it. Currently he’s fascinated with the alphabet and can sign several letters. He attends to signing much more than he attends to voice at this time. And he is guiding this ship believe me. We’re all for continuing to learn and use as much ASL as possible and would love to see him embrace deaf culture someday if given the chance. (We’ll likely have to move at some point down the road…) I’ve written about ASL a handful of times if you check the archives.

"i was amazed to see some of the special ed teachers actually cry at IEP meetings - they were worried about his future because he is different - i looked across the table at them - saw their CARE for my son but also saw that it was very PATERNALISTIC and wrapped in PITY - he doesnt need PITY - he just needs a fair shake at things"

Your son has teacher's that are so invested in him that they shed actual tears at a meeting? Do you know how rare that is? Praise be to God!

“i wish u all the best in your quest and i hope at some point u will feel it is less of a battle and more of a journey - i imagine it is very tiring and exhausting otherwise and u r in it for the long haul”

You are absolutely on the money with this observation. I think my terminology lately is just representative of what mode I’m in on the space/time contnuum of parenting a “special needs” child. As you know from your own experience, it's especially intense in the early stages while you are getting those labels identified. We’re not in love with the labels either, but they are the only way to guarantee services or funding. I’m realizing that it most certainly is a journey and that your presence of mind and mental attitude shapes the reality for not only you, but your child as well. I’m in “battle” mode at the moment because I’m facing another new label, and you know how defensive that makes a parent feel. It’s a process; there are stages and I'm moving through them.

“enjoy ur ethan - he is precious”

This is good advice – and I totally do. Peace to you, too.


flutter said...

He is precious, and so are you.

Hetha said...

(blushing) Awww shucks.

Sarah said...

What an amazing little boy. He is just beautiful! Did I mention how lucky he is to have you as his mother!

As for the doctors, that must be awsome to know they care so much!

patti durr said...

thanks for having written this response

re: the teacher shedding tears for my son - it was amazing in a sad way because the teacher felt it was her duty to normalize my son. he really didnt and doesnt need tears from anyone - just needs acceptance

we each walk to our own beat

i dont think im communicating well here what im trying to express. I always feel moved by others emotions especially when they raise tears. it was just that they were in response to my own son's future when in fact it is not tear worthy but worthy of joy and jubiliation even with all the challenges involved

thanks for sharing all u r doing with ethan and his use of ASL - hopefully at some point an ASL specialist can be part of his program - im not saying u the parents are not providing this. clearly u r going out of ur way to do so. its just that the system often focuses on the deficit model - fixing what is broken instead of accenuating what the child does have

wish u all the best and yes, u r very precious too

it is so nice to see how much u love ur ethan

re: warrior mode - it does pay off to be on top of things

im definitely sending u good thoughts on this journey as i know this juncture is a challenging one

again thanks for creating the post

much peace to u and ur family


Eileen said...

Hi Heather! I found this post interesting and I am glad you responded to some questions/comments that you received. I think you have opened up a lot of needed conversation for parents/relative/hearing vs. non-hearing people. These are such important issues, with so many unknowns. I hope you are printing out and binding all of your posts/comments, as well as documenting what you have been through and learned through each stage. I just think it is incredible information and could be used to help so many people.

Is this picture of Ethan after his most recent surgery? He looks so good!!! He looks like the picture of health, and of course as adorable as ever.

One thing I do know for sure, Heather, I am in awe of the way your parent your son. You are an Amazing person and mother.

Jeannette said...

(I so hear you)

Kyla said...

What flutter said, exactly.

Kellan said...

He couldn't be anymore precious, Hetha - you are truly blessed!! He has troubles, no doubt, and it is surly difficult for him and you - but he is the most obvious BLESSING and is touching so many lives.

Thanks for coming over and leaving the nice Anniversary wish. Have a good weekend and see you soon. Kellan.

slouching mom said...

You are strong and capable.

Bright, too.

An unbeatable triad!

(And Ethan? He's beautiful.)

Beck said...

Ethan IS a lovely little guy. It sounds like you're doing a WONDERFUL job with him!

Emily said...

Tag, you're it! Check out the details of the meme on my blog.