Thankful Thursday - Forgetful Friday

I know, I know - I missed Thankful Thursday. Can I blame it on the fact that I have been on vacation all week?? Here's is this week's list, a day late...

• Digital cameras - I love being able to delete pictures that don't turn out unlike the old-fashioned way of developing all prints and then throwing away half of them.


• Fudge - one can't go to the beach without getting at least a pound of fudge. Myrtle Turtle is my favorite!


• Ashley's willingness to try new things. Sometimes, there is a little bit of a battle to convince her that she actually will have fun if she just trusts me, but the end result is priceless. Thursday she agreed to go on a jet boat and ended up having a blast!!


• Swimming pools - if you know someone who has a pool, make them your best friend - at least during the summer!


• That Amber was finally eliminated on Big Brother. I was so very tired of her constant crying


• Solarcaine - the ONLY thing that makes a sunburn bearable.


• Satellite radio - no matter where we drive, I can always listen to my 60's music and that is very important when on vacation


• That even though vacation has been wonderful, getting back into a structured routine with the start of school is just around the corner


• That Chip finally finished his second of three books on his summer reading list. So now there are two days left and one book to go - but who wants to rush?


• And most importantly, that I have a job that allows me to take a week of vacation every summer, that friends and family can enjoy that vacation together, and that everyone stayed healthy all week!

Beach Chickens

One of Ashley’s favorite things to do at the beach is to feed the seagulls. I’ve taught all my children from a very young age how to throw food to one seagull, and almost instantly 20 more will appear. We’ve fed them from hotel balconies – we’ve fed them while we were on the beach – we’ve fed them in the mall parking lot - and one of our all time favorites, we’ve fed them while riding the ferry from Hatteras Island to Ocracoke Island in North Carolina.

Depending on the location and how familiar the gulls are with people, we can sometimes get them to take the food right from our hands. I have found, however, that not all people enjoy a flock of gulls circling above their heads. My family has had lectures from others about how nasty the birds are and that we’d better be careful lest they try to attack us. Folks on last year’s ferry ride asked us to move to the back of the boat if we insisted on feeding the birds. Ummm, is liking seagulls akin to being African American in the 1950’s?

Even if we are the Rosa Parks family of the seagull set, I love to see the looks on my children’s faces when the birds swoop and dive trying to get their morsel of food. Ashley calls them “beach chickens”, and the other day at the beach, fed them a peanut butter and jelly sandwich and part of her chocolate cupcake. See, they’re learning about nature and about sharing all at the same time!

Who Is This Person?

I am more amazed each day at how Ashley has blossomed this summer. I know I have written about it before, but she just keeps shocking me more and more. We decided to take a day trip to the beach yesterday. We packed the van with enough stuff to last a week (the moms that read this will understand that comment) and headed east. We had not gotten very far when we crossed a river – not the beach, mind you – just a river. Ashley started to sign “swim please”. There’s the first shock. This child is totally blind in her left eye and has a acuity of 20/2000 (yes, two thousand) in her right eye. She can only focus at about one inch from that eye, yet she recognized water somehow and knew we were going to the beach to swim.

On the way there, we decided to stop at an historic family diner for lunch. The place was PACKED – not just crowded – PACKED. In the past, we would have avoided a crowd like that at all costs. It would have been way too much stimulation for my deafblind child, and after a few minutes, she would have had a meltdown of volcanic proportions. Yet today was different. We dodged the crowd, fought to get her wheelchair into the diner (not the most accessible of places), waiting about 10 minutes, and then had to weave through the entire place and dozens of people to get to our table.

In the past, waiting was not an option. If we could not immediately walk to our table and have food waiting, a meal out was just not going to happen. Several years ago, the folks at Shoney’s Restaurant figured this out, and when they saw my van pull into the handicapped parking space, would call back to the kitchen to get a grilled cheese sandwich started. By the time we were shown to our table, Ashley’s food was ready. But today was different.

We waited, we strolled to our table, and then Ashley began looking at the menu. She had to hold it one inch from her only good eye to see, but see she did. We all ordered at the same time – also an unusual occurrence, and then we waited patiently about 20 minutes for our food. We ate, we had desert, and still Ashley was happy and relaxed. She did insist on eating about half a bottle of ketchup, but hey, one success at a time!

Somedays I look at this young woman and feel like I don’t know her at all. But then, when she refuses to be wheeled out of the restaurant without holding my hand the whole time, my little girl is back and she needs her mommy. I am so very proud of the woman my little girl is becoming.

Language of Choice

For the past four years, teachers and administrators at Ashley’s schools have pushed her to use an augmentative communication device. One of her speech therapists at our local children’s hospital even agreed with that approach, and suggested we get a speech generating device for home. So I did. I made sure we got the same device with the same software that the school has tried to teach Ashley to use, and the school staff, the speech therapist and I all sat down and decided on which symbols to use on the device. And for four years, Ashley has rejected the device.

The device we tried was big and unwieldy, about the size of a computer keyboard. But, we also tried smaller devices, devices Ashley could wear with a shoulder strap, or one she could put in her pocket. None were welcomed by Ashley and none were used. I’ve finally realized that Ashley was trying to tell us something these past four years, and I have finally gotten the message – she prefers sign language as her means of communication.

Although I have fought with my school district to always have someone who uses sign language available to Ashley in the classroom, that someone has frequently not been provided. So it makes sense that if the school could get Ashley to use the speech device, they would save themselves the cost of an experienced signing staff person. Sorry, but Ashley has made clear her feelings about that. So dare I say it – we don’t want that aug comm service that you, school district, are offering.

I’m sorry that it took me so long to accept Ashley’s wishes in this matter. As a parent of a child with significant disabilities, I want to always make sure that I provide any option I can that might make her life easier. What I wasn’t doing, however, was viewing her life from her perspective. Yes, it makes it easier for others if Ashley uses a speech generating device, but it makes it harder for her. With sign language, as with a non-deaf person’s voice, Ashley always has her communication at hand (excuse the pun). She doesn’t have to worry about replacing batteries or making sure she has the appropriate sheet of pictures loaded or whether she can even find her device. Her life is much easier if she doesn’t have to carry a keyboard-sized electronic device every where she goes.

So, my sweet Ashley, like I’ve always said, you are perfect in every way. Talking with your hands makes you even more special in my eyes. I do not view that as a disability, just a difference. It is not your responsibility to make sure you are taught appropriately by people who understand and speak your language – it is the school’s responsibility. Today and every day in your future, we will celebrate the beauty of your language of choice, and I’m sorry it took me so long to figure this out.

Thankful Thursday

Here is today's list of things for which I am thankful:

• Chinese food delivery


• That Brooke is improving each and every day and hopefully will be able to go home from the hospital soon


• Going for a walk in my neighborhood on an unusually cool August evening


• People, like Amy, who feel led to be foster parents


• Teenaged sons who can help with all the heavy chores around the house


• That the severe thunderstorms that rolled through our neighborhood twice this past week and knocked down almost a dozen trees didn’t take any of my trees


• Automatic car washes


• Cell phones with unlimited text messaging


• Large fabric stores – I’m like a kid in a candy store in them


• Big, fluffy white towels

Ryan's Mommy

A mother is likened unto a mountain spring that nourishes the tree at its root; But one who mothers another’s child is likened unto a water that rises into a cloud and goes a long distance to nourish a lone tree in the desert.

The Talmud

There’s a new mommy in town, and her name is Amy!! Yes, Amy – the person who has been like a daughter to me, and a big sister to all my kids. Four month old Ryan, the child of a drug-addicted mother who is on her way to either rehab or jail, will join his new foster mommy very soon. What a lucky little boy he will be!!

Amy decided a few months ago that she was ready to be a parent. And, being the incredible person that she is, she decided that she wanted to foster and/or adopt. It takes a really, really special person to become a foster parent, and the job is even more difficult if the new parent is a first-time parent. Knowing that the foster child may only be a temporary addition to the family can be heart wrenching and requires someone of great maturity to accept. To be able to give 100% of your love to a child, and then run the possibility of that child not staying is, in my opinion, one of the hardest situations for a parent to tackle. I have always thanked God that there are people who can handle that burden, and now I know one first hand – Amy!

The extra bonus in this situation is that I am now a “foster grandparent” of sorts, and Amy and I are trying to figure out what little Ryan will call me – Nana? Nanny? DeeDee?

God bless you, Amy, and little Ryan too!

Random Musings

Ashley is channeling Elvis and Stevie Wonder today. She is sorely in need of a haircut, something I can always figure out when her hair starts to look exactly like Elvis’s. And, this morning while waiting for the school bus, her rocking back and forth blindism was exactly like Stevie Wonder. She needs to take her accordion and our dog who ‘sings’ when she plays her accordion on the road and earn us some money with this act. We can call it Stevie Elvis and her Wonder Dog.




Let’s see – we’ve got a week and a half before school starts. I haven’t seen the job posted for Ashley’s new instructional assistant (who must be fluent in sign), and the school administrators are conveniently in meetings whenever I call to ask a status. You can bet I'm going to school that first day to see if ANYONE is using sign language to communicate with my deaf child.

Vacation is now 3 days and 22 hours away, but who’s counting!

Even though Ashley is receiving extended school year services through the end of this week, yesterday school transportation told me all bus drivers have to attend mandatory training and cannot transport Ashley to school. I called the head of transportation and asked for his assistance in beaming Ashley to school (think Star Trek). Lo and behold, a bus showed up for her this morning.

Ashley was finally able to eat a Cheeto this morning, the first time since her dental surgery last Thursday. Life is once again bearable…

Vacation is now 3 days 21 hours and 56 minutes away, but who’s counting!