Next Time, Ask

Last Saturday I attended something billed as a ‘Summer Institute’ for families of children who are deaf or hearing impaired. This ‘institute’ was held from 9am to 4pm at one of our local parks and was touted to have consultants from our state Department of Education, our state’s deafblind project, the Department of Rehabilitative Services, Resources for Independent Living, and other similar groups.

The day was arranged and sponsored by a local group called the Parent-Child-Advocate Program. It’s a group headed by a psychologist who is not deaf but who claims to offer assistance to ‘diverse’ populations. I attended a sign language class recently with this doctor’s intern and I must admit, she was quite taken with her signing ability. Unfortunately, the teacher and the rest of the class were not.

So, this whole thing baffled me a bit. I didn’t understand its structure or intent. And what I found at the ‘Summer Institute’ did nothing to clear up my confusion.

The meeting was held in an old carriage house. The facility was barely accessible and every noise echoed horribly. After just a few minutes in the room, Ashley couldn’t take it any longer. I also noticed that only one of the presenting groups had a representative present. The other groups had set up tables and left printed material but no person was present.

I felt uncomfortable, and Ashley was even more uncomfortable than I. The only bathroom facilities weren’t even close to wheelchair accessible, and I don’t believe the organizers (the doctor’s staff) took into account that not all deaf children are mobile.

Hopefully, this was just another of those organizations that has a good idea but doesn’t know how to implement the idea. I do have a suggestion for them – next time, ask the people you are targeting as attendees. Ask parents what works and what doesn’t work for their children. Ask both the children and the adults who are deaf what they have found will work for them. And then implement those ideas.

Please do not assume you know what will work. You are not deaf – you are not hearing impaired. None of you as far as I could tell had mobility issues or were vision impaired. If you really want to provide something of value, you must know your target audience.

And if the goal was to drum up business for the good doctor (his website lists him as a ‘life coach’), be upfront about it.

If you wondered why Ashley and I left after just 45 minutes, now you know. I hope you care.

Surfing - The Good and The Bad

While I surfed the web this weekend, I found two stories I wanted to share. One is very good news, and one if very bad news. First the good news:

From the HumanWare website - HumanWare, in partnership with the Washington State Office of Deaf and Hard of Hearing (ODHH), has developed a new deafblind communication system. The DeafBlind Communicator (DBC) is the result of collaboration between deafblind individuals and focus groups, professionals from both the deaf and blind communities, and HumanWare’s engineering and marketing teams. The basic DBC provides three types of communication for deafblind users: face-to-face, TTY, and SMS Texting.

Check out their website and find out more about this remarkable device that opens the door to the world a little wider for people who are deafblind.

Now the bad news:

Apparently the life of a child born addicted isn't worth much. The child's parents abused and neglected her after birth, resulting in the child's deafblindness, broken bones, and cerebral palsy. Although the parents were arrested and taken to court, the father received a 4 1/2 year sentence and the mother a 3 year sentence.

Read more about this horrible story here...I wish I could bring the little girl home with me.

Paging Dr. McYummy

Ashley and her MRI films were seen today by her neurosurgeon, affectionately known as Dr. McYummy. He is such a handsome man with piercing blue eyes and the most wonderful bedside manner. He seems to care - he definitely listens to my concerns - and he seems to like Ashley a lot. I wish I could say that about all her doctors.

Ashley's brain tumors had not changed at all since the MRI 6 months ago. So, at the doctor's advice, we are going to go for a year until the next MRI. It's a little scary, but I am going to give it a try.

There's both good and bad about that decision though. The good is that Ashley won't have to be sedated and won't have to go through the hospital procedure as often. The bad is that we won't see Dr. McYummy as often :(

P.S. That's Dr. McYummy in the picture above looking at Ashley's brain.

Thankful Thursday

Today's Thankful Thursday post is late, and that's because Ashley had an MRI under anesthesia today. We had to be at the hospital early, but still waited several hours before the actual procedure. If there is one thing that Ashley doesn't do well, it's waiting.

So today I am thankful that the MRI is over, and that Ashley probably won't remember the battle we had getting her to lie down on the stretcher for anesthesia.

I am thankful for the wonderful recovery room nurses. Since Ashley has these MRIs every six months, the nurses remember her, and know how important it is to keep me posted on how Ashley is doing. They make sure to call me to recovery just before she completely wakes up so my face can be the first one she sees.

I am thankful for my son, Chip, who has gone with us to the last two MRIs. It's comforting to have him by my side, and his muscle is ever so helpful for lifting wheelchairs and a certain reluctant 14 year old girl.

And, I am thankful that Ashley was back to her normal self within an hour of arriving home. It's amazing how therapeutic some macaroni and cheese can be!

Our visit with the neurosurgeon is tomorrow, and I am thankful we don't have to wait long to know the results of the MRI. If the three tumors in Ashley's brain are still not growing, then we may be able to go to once a year MRIs.

And most importantly, I'm thankful for the most amazing and beautiful 14 year old girl there ever was!

Special Exposure Wednesday

Even a girl with a vision impairment so significant that she can only see about an inch from one eye is still lured by the teenage-pull of texting!





Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Great New Resource

The Center for Education Research Partnerships at the National Technical Institute for the Deaf, a college of Rochester Institute of Technology, has launched a website intended as a source of unbiased information for parents, teachers, and other professionals who work with deaf children.

About 90 percent of deaf children have hearing parents, "so many times those parents feel overwhelmed and at a loss to find resources to answer questions they may have," said a press release from the center.

The information is presented in a Q&A format and covers a lot of ground, from acceptance of cochlear implants in the deaf community, to issues of social development. But the site will be even better when there are more questions archived there. The people answering the questions are experts in this field, so anyone interested in this topic should definitely take advantage of this resource.

Cart Before The Horse?

Let's see, It's June 1st and there are only a few days of school left. By now, Ashley's IEP team should have met and developed both an ESY IEP and the IEP for next school year. Ashley is transitioning to high school, and as a team, we need to discuss the options for which high school she will attend. We have had no meeting and no meeting dates are set yet, but....

In the mail yesterday, I received a letter from one of the high schools which would be a possibility for Ashley to attend next year. Seems that high school already has her listed as a student for the 2009-2010 school year, and they have already assigned her to classes.

Silly me, I thought we might need to have her IEP developed - you know, goals and objectives and a placement decision - before that letter was sent.