A Moving Tribute

Do you ever wonder if your child with a disability understands and appreciates all that you do for them? Do they comprehend, even at a young age, the battles we fight, the tears we cry, the sleepless nights, and the joys that they have brought into our lives? I'm not sure of the answers to those questions for my children, but when I see a story like the one linked below, it gives me hope.

He's Immobile But His Story Has The Power To Move

Lance Carr's story is in the news today, and he will appear in person on the Today show this Thursday. If you are able to watch, I think it will be time well spent. I know that just reading the story made my heart smile...

Spreading The Word

Yesterday, the support organization of which I am President, Dreamcatchers (Families Whose Lives Are Touched by Deafblindness), collaborated with another Virginia support organization, VAAPVI (Virginia Association for Parents of the Visually Impaired), for a family fun day at the University of Richmond. And although the turnout was less than expected, the setting was ideal and I think everyone who attended had a great time.

Ashley's intervener, the lovely Miss Amy, helped set up and man the Dreamcatcher tables. We had our great (donated) banner, some new brochures, and pictures of both our past annual family retreats and of Chancellor, one of our adorable Dreamcatcher children who was called back to Heaven earlier this year.



The King Family (Brian, Emily and the handsome young Noah), also one of our Dreamcatcher families, joined us to help out and spread the Dreamcatcher message to all the families and professionals in attendance. (And no, the red-headed person is NOT part of their family!)



And Noah and Ashley also managed to work in some fun for themselves! Noah enjoyed showing his Dad how to hammer nails to build a birdhouse, and Ashley made sure the fire engine had correctly spelled 'Dial 911'.



Ashley's favorite, however, was not the face painting, the balloon toss, the free food, or the clowns. Nope - her day was complete when she found the orange traffic cones!

Today I am Very Sad...

and at times like this, it's really hard to understand and accept that there is a master plan.

Four Children With Special Needs Die After Their Bus Crashes

No Child Left Behind? Really?

There have been 19 days of school so far this new school year. And for all 19 of those days Ashley has not had the support called for by her IEP.

Ashley’s IEP calls for the services of an instructional assistant who is ‘sufficiently proficient in sign and speech so as to provide a language role model.’ The IEP states she should be receiving those services for 6.75 hours each school day. The school day is exactly 6.75 hours long.

Since providing such services has always been a point of contention in past school years, I checked with Ashley’s school staff prior to the start of this current school year. I was told, of course, that they had not been able to find anyone to fill the position, and that the classroom assistant in Ashley’s class would fill in until someone was hired. The classroom assistant is ‘sufficiently proficient’, and I am more than pleased when she works with Ashley. So, what’s the problem?

The problem is the classroom assistant is entitled to a lunch break every day. So, for 30 minutes each day, Ashley is without communication support. The classroom assistant is also entitled to sick leave. So, for one full day this month, Ashley was without communication support. And, the classroom assistant must attend weekly physical therapy sessions outside the school building for an injury she sustained last year in the classroom. So, for two hours each week (in addition to the lunch break and the sick day), Ashley is without communication support. None of this is the fault of the classroom assistant. She is doing everything she possibly can to assist Ashley, but the school district has rules that must be followed (lunch breaks, sick time, etc).

Ashley is profoundly deaf in her right ear, and has a severe loss in her left ear. She is totally blind in her left eye, and has a clinical measurement in her right eye of 20/2000. She communicates with sign language and prefers that whoever signs to her does so directly in front of her ‘good’ eye. She doesn’t use a communication board because she has chosen not to. She doesn’t speak because she has never been able to hear well enough to learn to speak. Sign language is her preferred and only means of communication. None of this is news to my school district. Ashley is currently in the eighth grade and has been receiving services from this same school district since she was two years old.

At the start of the second week of school, after attempting to resolve the issue with my school district and getting nowhere, I filed a complaint with my state Department of Education. At that point, a very long timeline goes into effect due to all the administrative aspects of the complaint investigation and resolution. Monday, September 29th, the school district is required to file a response to my complaint – unless of course they don’t and then they are given another 7 business days. The actual investigation by the Department of Education may then take up to 50 more days – for a total of 60 days – unless ‘exceptional circumstances’ exist and then they get more time. If the school district is found to not be in compliance, they have 30 business days to file a corrective action plan, unless they don’t file. Then the Superintendent for the Department of Education is notified and gets involved. Then….who knows. That’s where the documentation stops.

So, do you think this will get resolved this school year? Here’s a hint – I’m getting more than a little perturbed and I have my attorney’s phone number on speed dial.

Thankful Thursday

On this cool, rainy day, I am thankful...

• for big umbrellas


• for homemade chicken soup


• for Puffs tissues with lotion. I've got a sinus infection and these things are wonderful


• that Dancing With the Stars is back on TV and that Maks is one of the professional dancers


• for the three straight hours of sleep I got last night. Ashley's Melatonin may be starting to work!


• that tomorrow is opening day for the movie Nights In Rodanthe. I love Richard Gere and Rodanthe (Outer Banks of North Carolina) is one of my favorite places in the world!


• for the emails I got from Ashley's birthmother this past week


• that hot cocoa season is right around the corner


• for curbside recycling


• for the help that my friend, Jackie, provided this week for our Dreamcatchers Family Support Group

Special Exposure Wednesday

Ashley loved meeting the leopard gecko that one of her teachers brought to school!

Can't We Be Friends?

I heard from Ashley’s birthmother again last week. After finally making contact with her a couple of years ago, I get emails about every 4-6 months asking how Ashley is doing. Here is a post I wrote a while back after speaking with her about an upcoming surgery for Ashley. While most of the people who are aware of the circumstances surrounding Ashley’s birth don’t understand why I would even entertain a conversation with her birth mother, I do feel it is important for several reasons.

First, I want to have as complete a picture of Ashley’s life, and that includes her life before I met her at 18 months old, as I can. I want to be able to answer her questions should she have any about her birth and her birthmother. I need to know if anything happened to Ashley in those first 18 months of life that could possibly have a lifelong impact on her.

Secondly, I would really like to have some family medical history. Ashley’s birthmother has been reluctant to share that information with me about her family, and has refused to provide contact information for the birthfather. But, I’m still hopeful that one day she may be willing to share such information. Yes, Ashley has a lot of medical conditions already – most related to her premature birth and her birthmother’s abuse of alcohol during pregnancy, but is there more? Did heart disease or diabetes run in the family? What has been the average life span of the members of Ashley’s birth family? Has there been mental illness diagnosed? I don’t want these answers to judge, but only to help Ashley prepare for her future.

And finally, although this is selfish of me, I would like Ashley’s birthmother to know Ashley – to see what a happy, loving child she is – to know that Ashley is the love of my life and that I will always do what is in her best interest. I would like for the birthmother to agree that Ashley is better off now, and maybe with that knowledge, move forward to silence her own demons once and for all.

Ashley brightens the life of everyone who meets her, and I think her birthmother could use a little of that brightness – both now and in the future.