Dreading The Next

I think I’ve lived in a state of denial the past couple of years when it comes to thinking about Ashley’s post-school life. She is 16 and we do have some time, just a little time, to figure things out, but I am at the point of worrying now.

Research shows that employment for people who are deafblind and multiply disabled is not good. That same research shows most of those people end up just living at home or in a *facility*, unable to find work.

I hope to be around for a while yet, but I do still worry, and worry seems like too mild a word for my emotions on this subject, about what will happen with Ashley when I am no longer around. I don’t believe she will ever be able to live independently, and even if she could acquire those skills, would she be able to find a job to support herself? And, with my experience with *facilities*, I don’t believe there would be anything worse that could happen to her.

The school system is not doing a very good job of preparing Ashley for life after school. Yes, we have functional goals in her IEP, but the school’s investment ends when Ashley leaves school, and sometimes even sooner. There is a one size fits all mentality in the school when working on job skills. “let’s all go wipe down the table in the cafeteria” for example. I have yet to see a real interest in discovering what Ashley prefers to do, what tasks interest her, and what tasks drive her crazy. If her preferences are not factored into the training, it seems to me to be a total waste of time.

In Virginia, we do have a rehab services agency that purports to serve people with disabilities who want to find a job, and training for a job. That agency won’t become involved until the last year of school for the student, and at present, have shut their doors to all because they say they are out of money. It’s too late to wait until the last year of school. And my experience with this particular agency is that they will work with the more mild disabilities, but send them someone with multiple, less common disabilities and they throw up their hands.

So, any of you in a similar situation as mine, what have you done or what are you planning to do for the post-school years for your child with multiple or less common disabilities? Is your child going to stay in school for as long as possible? Have you found private agencies that serve adults with disabilities to be more proactive than government-run agencies? And, at what age did you start working on a plan for your child?

Are you as worried as I am?

We Shall See

Apparently I ruffled some feathers last week with all my calls and emails about school bus schedules. On Friday, I got a call from the head of transportation and one from the director of special ed. The special ed director even offered compensatory services for the time that Ronnie has missed by being at least 30 minutes late for school each morning.

After I arrived home from work, I got a phone call from the second in command of transportation. That gentleman said that beginning Tuesday, Ronnie would have a different bus and a different schedule. The new schedule has him being picked up at 8:17am.

Of course, the first bus had a promised schedule of 8:20 am so I guess I will have to wait and see if the new bus will actually be on time. I sure hope so...

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The weekend was difficult with all the 9-11 tributes. I watched hours of shows, almost as much as I watched when the events were originally unfolding. My grief and sadness was just a raw as it was then, and the tears just as plentiful.

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When I wasn't watching the 9-11 tributes, I was absorbed by my own little marathon of The Good Wife. I never watched the show when it was on TV, but several months ago, I started watching season one on Netflix. After just a couple of shows, I was hooked. I couldn't wait for season two to come out on DVD, which it did this weekend. Now I just have to get in 16 shows before season three starts this coming Sunday!!

The Clock Is Ticking

It’s the end of the first week back at school, and for the three of my children still in the public school system, almost everything has gone very well. But, the one thing that hasn’t gone well is very very not well.

In my town, high school starts at 8:45 am. The past two years, Ronnie and Ashley went to the same high school and were picked up by the same accessible bus. The bus driver knew my family well, and understood that as a single parent, getting to work on time was important. He changed his route schedule just a bit to pick Ronnie and Ashley up first. That allowed me to get to work on time. Not so this year….

The problems started the Friday before school was scheduled to start. As I always do, I called transportation to verify that I still had the correct bus numbers and schedules. Ronnie moved to a new high school this year, so I was dealing with two bus numbers and schedules.

When I called, the transportation office gave me the bus number and pickup time for Ashley – bus number 1980 and pickup at 8:16 am. That was going to be a problem by preventing me arriving at work by 8:30 am. But, I figured I would let the transportation issues settle in the first week, and then I would make my request for an earlier pickup.

Next, I asked for Ronnie’s bus information. “Ronnie who?”, they said. Even though his IEP denotes special transportation with pickup and drop off at home, there was no record of that need. I tried to reason – I called the school teacher and principal – I got angry – and then I drew a line in the sand. Ronnie would not be at school the first day unless someone picked him up.

Perhaps as retribution for that line in the sand, on Monday (Labor Day) I got a call saying bus 300 would pick him up at 8:20 am. Again, that’s a problem for me getting to work on time, but again, I decided to let things ride for the first week.

Here’s how the first week went:

Tuesday – Ashley picked up at 8:30am, 14 minutes late. Ronnie picked up at 8:55 am, 35 minutes late and 10 minutes past the start of school. Once he arrived at the school, I estimate he was about 30 minutes late for school.

Wednesday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:50 am, 30 minutes late, and again, late for school.

Thursday – Ashley picked up at 8:25 am, 9 minutes late. Ronnie picked up at 8:45 am, 30 minutes late and again, late for school.

I’ve called and emailed and whined and begged and been professional all the while. The only response I get from transportation is that they are discussing to see if there are any other options.

Well, school district, here’s an option – you are not providing services as outlined in Ronnie’s IEP since he is late getting to school each day. I feel a state Department of Education complaint brewing, and compensatory time building.

The Beat Within

How about some awesome ASL-translated music for the dreary, rainy day? I think it's just what the doctor ordered!!

Special Exposure Wednesday

Being lazy the day before school starts...

A New Girl

I'm very interested to find out if Ashley's teacher and other school staff notice a difference in her now that school is back in session.

Ashley and I worked very hard over the summer to reduce and then eliminate two of her medicines, medicines she has been on for over 10 years. The side effects of those medicines include drowsiness, agitation, and a general malaise. I think the difference is pretty astounding, but am interested to see if others notice.

When Ashley met with her neurosurgeon last week, he noticed a difference. He believed she was more aware, more engaging, more in-tune with the world around her, and I agree completely. Of course, that comes with its own set of challenges!

Those teenage behaviors which can wear a mother down are more pronounced now. There is more emotion, more opinion, and yes, more drama. But there is also more understanding, more learning, and more 'presence'.

It is difficult at times but I love it!! Let's see what the school staff thinks :)

Earning the Tee-Shirt

We can now officially wear the "I survived Hurricane Irene" tee-shirt.



After 7 long days and even longer nights, our power was restored, and my life got better. I told you in my last post that I would be back as soon as the temperature inside my house was cooler than outside my house, and by Saturday morning, that was the case. It was then on to tackling the mountain of laundry that had been building all week, and now it is Sunday evening, and all the laundry is done!



The first few days after Irene stopped in for a visit were sort of an adventure. By day four, we were all cranky, hot and ready for life to get back to that which we call normal.



I know we did not have it anywhere near as rough as others. In fact, there are still about 10,000 people in my area who still at the end of day 9 do not have power. And then there is the tragedy of North Carolina's Outer Banks. They weren't wiped off the face of the map, but it was close.



I am very thankful for the generator that we have, even though it did die on day 6. Thankfully the generator repair folks were Johnny on the spot and got it fixed in a couple of hours. And, I am thankful that I had an air-conditioned office to go to each day. It was 8 hours of respite from the heat.



Now, Hurricane Katya is headed our way, but the hopes are that it will turn before it hits the East Coast. I sure hope the forecasters are correct because otherwise, I am packing up and heading far, far away...



Now on to the next challenge of our life - the start of school!!!

Need a Break

It's been a rough week and it doesn't look to be getting any better for the next few days. Hurricane Irene hit last Saturday and we have been without power since. Our power company now projects our power will be restored late Saturday night.



Four more days.....



I'm exhausted from not sleeping. I'm sick and I think Ashley is also. I'll find out when we go to the doctor this afternoon.



I'm tired of being hot, tired of not being able to do laundry, tired of our routines being tossed about and shaken up. It's not sitting well on any of us.



So, I need a break. I need to not do all my whining here. I need to just go away until it is all better. That will be when my power is back on....



See you again when the temperature inside my house is cooler than the temperature outside....

Special Exposure Wednesday

How do I love thee? Let me count the ways...



You have kept the lights burning bright since the hurricane ravaged my town. You have allowed me to run fans to keep the heat at bay. Because of you, I can cook with my crockpot, my wok, and my electric griddle. You help me iron my clothes and dry my hair. You even wash my dishes.



Sure, you can be loud and obnoxious. My neighbors say the sound bothers them, but I think what really bothers them is that they don't have one of your family members.



You have kept me somewhat sane for 5 days now and who knows how many more are to come...



Thank you, my generator, from the bottom of my heart!

I Didn't Forget

I haven't forgotten to post today, but I am just delaying my post.



Ashley's appointment with the neurosurgeon is today. We will get the results of her recent brain MRI. So I've decided to delay my post until I have (hopefully) good news to share...



Stop back by this afternoon please...



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Here's the post-doctor update, and it's a good one!!



There has been no change in Ashley's three brain tumors. The neurosurgeon has watched her closely over the last 5 years and done too many MRI studies to count, and each and everyone was exactly the same.



The verdict? We can now wait 3-4 years for another study, unless of course I notice any changes like weakness, headaches, loss of function, etc.



To say that I am thrilled is an understatement. The MRIs were so very difficult for Ashley and the use of anesthesia was always scary for me.



The doctor did scan her cervical spine this past time, and he also noticed nothing of concern there. He did say she has a bit of arthritis, but if she's not complaining, then neither am I!!



It's a good day. Now if we could just get our power back on post hurricane Irene, it would be a great day!

Whew!

What a weekend! Hurricane Irene came for a visit, and turned our town upside down. As of last report, still almost a million people in Virginia alone are without power. We are one of those, but fortunately my generator is chugging away. It provides everything but laundry facilities and air conditioning.



The power company said it would be 1 to 2 weeks before all power is restored....



Here are some pictures for your viewing pleasure, and so you can breath a sigh of relief if you were not in Irene's path!



My neighbor to the right is a school teacher. She may be a great teacher, but she is not the best hurricane planner. I mean, who leaves plastic lawn chairs and empty trash cans sitting in the driveway when winds are projected to be 75 miles an hour.











She was also one of the folks who had tree damage. And, her tree decided to take out our fence!







Our neighbor on the other side had a tree that split and fell across power lines. I guess it's not dangerous since THERE IS NO POWER!







In our yard we just had a lot of branches fall - nothing major.







And I am very proud of my little peach tree for standing its ground! There were times when it was bent almost horizontal to the ground, but it didn't give up!







As it turned out, my immediate neighbors and I had it pretty easy. Check out this tree that fell across the road leading out of our neighborhood!







And because I felt a tiny bit guilty being the only house on the street with a generator, I decided to share our good fortune with all our neighbors the next morning!







I'm very glad it is over, and hope that no more hurricanes come our way this season!!

Bring Them Together

A week ago, I wrote about a father who beheaded his son with disabilities. The father said the constant and ongoing care made him look at his son as an object rather than a person. Today in the news is the story of a mother who dropped her baby from a parking garage. The baby had an orthopedic condition that was correctible, but the mother was overwhelmed by the way the child looked. And, my blog is full of other similar stories.



In each of the cases, the offending parent is usually prosecuted and convicted. But I really wonder – does it have to get to that point? What if the parents had support early on, support that would help them learn coping techniques, support from someone who has ‘been there, done that.’



Obviously something is not working in our society when it comes to caring for a child with disabilities.



Many, many parents, probably even most parents, when confronted with raising a child with disabilities, will buckle down, educate themselves, and become even better parents than initially thought possible. The provide love and encouragement, care and consistency. They provide a future for their child.



And then there are the parents who do not.



I wonder if bringing the two together could make a difference. Would having a parent in a similar situation, a parent who has developed coping techniques, who has learned to bury the dark thoughts, who has become an advocate for their child, a parent who could serve as a role model for the new and/or overwhelmed parent begin to save lives?



I was lucky. I found a group of supportive parents who could be there for me. Parents who could help me navigate the systems which so often lack the understanding and compassion we and our children need. But in the beginning I did feel an intense isolation. I believed no one understood what my life was like, and I believed that everyone was judging me. It took action on my part to find my circle of parents, and I wonder if the overwhelmed parents are even capable of taking that action.



I don’t know who could connect the two. I don’t know who could set up a mentorship program that provided support when it was instantly and desperately needed. But I think it is an idea that should be tried.



I’m tired of reading about children who die – children who could have long happy lives.

Is That Locust I Hear?

So, did you get to experience the great shake, rattle and roll this week? Just 35 miles from my home, a rare and unexpected earthquake struck. It was a 5.9 on the Richter Scale, and I realize that to folks on the West Coast that is no big deal. But to us here on the East Coast, it was like one of the biggest deals ever.



I was at work when the rumbling started. Never having experienced an earthquake, my co-workers and I were a little stunned at first, wondering just what was going on. And silly me, my first response was to reach up and keep my computer monitor from dancing off the edge of my desk. Then about 200 of the 400 workers in my building ran outside.



Who knew running outside was not the thing to do???



Who knew that standing on the top of an underground parking deck was not the thing to do??



Who knew that cell phone service would more than likely be disrupted?



I felt like I did on 9/11, all I wanted was to hear my children’s voices and know they were ok. But I couldn’t because no calls were going through. It is a horrible, horrible feeling to be in the middle of something major and not be able to know how my children are. I just wanted to go back into my office building so I could try calling on the land line, but the Capitol Police Officer stationed at the door refused to let us back in.



Finally, after about 45 minutes, we were told we could re-enter the building. I went straight to the phone, called home, and got the news that everyone, although a little frightened, was ok. Ashley even thought it was fun and spent the rest of the evening bouncing on her chair to simulate the shaking!



So, we’ve had the wildfire burning in the Great Dismal Swamp causing all of us respiratory problems. We’ve dealt with an earthquake, and we are battening the hatches for Hurricane Irene which is headed our way. I really expect to see locust next…..

Special Exposure Wednesday

My sweet Ashley trying to wake up after her MRI under anesthesia....

This and That

I so despise sitting in a hospital surgical waiting room. Worry hangs in the air like smoke from a camp fire on a cold, windless Winter night. No one smiles, but there is a lot of finger drumming, foot tapping, leg shaking, and wary eye darting. Everyone waits for the call that will make their heart breath a deep sigh of relief.



Ashley wasn't having surgery last Friday, but she was under anesthesia for an MRI of her three brain tumors. Anesthesia and kids with significant special needs, including breathing issues, do not a good mix make.



While I watched the hospital pastor approach one of the most anxious families, I knew from experience that the news wasn't going to be good. I've been there, and I just wanted to scream at the priest and tell him to go away, all the while wanting him to just pray as hard as he ever had in his life.



Today, my call came and it was good news. Ashley was in recovery and I could come hold her while she woke. The cloud of worry over my head dissolved as if it had been rained upon...



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Ronnie absolutely refuses to practice walking with his braces and crutches. About a year ago, he said he wanted to learn to walk. Although he didn't like to slow down his life to go to physical therapy, he was cooperative when he got there. He worked very hard, and was able to take a few difficult steps.



But now he has decided he does not want to walk.



I think it is because the learning is difficult, and even the result, should he learn to walk, would be more difficult than just wheeling himself around in a chair.



So, should I force him to keep going to therapy, knowing all the while he won't practice? Or should we stop? It could be viewed that he has accepted himself as a wheelchair user and he is comfortable with that versus someone who has to work very hard just to be a walker like most of the world.



I'm going to speak to the therapist, but I am leaning towards supporting his acceptance as a wheelchair user.



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Ashley always has been a picky eater. Actually, picky is too mild a word. She was fed through a G-tube for many years, but then became a proud graduate of the Children's Hospital Feeding Program. What that meant is that she would tolerate soft foods in her mouth. Her diet was made up of mac and cheese, mashed potatoes, pudding, applesauce, chicken nuggets, and Le Suer baby peas (HAD to be Le Suer).



Through the years, I have tried introducing new foods, and ever so slowly she has added to her menu plan. She now will eat raw spinach, scrambled eggs, chicken salad, tuna salad, and cupcakes. But she still has a long way to go.



For some unknown reason, there is one place she will always try new foods.



The kids and I often go to a restaurant named Positive Vibe Cafe. The Cafe was born from a marvelous idea (read it here), and the food is spectacular. Earlier this summer, she tried key lime pie there. And this past Saturday, Chip convinced her to try fried calamari. After placing a ring of squid on each finger, she then proceeded to gobble them down (the squid, not her fingers). The waitress was so excited that she asked the chef to make a few more for her!!



I wonder if the owner would rent out a room for us to live in??



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I found the storm trooper helmet hidden behind the toilet. Ronnie had been in the bathtub, so I wasn't surprised. But I couldn't find the storm trooper anywhere. I asked Ronnie after he had finished his bath and was in his room, and he just shrugged. But it was a slightly guilty shrug, and I soon found out why.



The storm trooper has decided to go for a ride down our toilet.



For the record, storm trooper do much better in space than in the sewer system...

More Alike Than Different

Love, love, love this video, and just had to share it with you...

The Worst Day

Today is the worst day so far this year...



Ashley and I will be at the hospital early this morning for her annual MRI under anesthesia. Ashley has three brain tumors. We've been watching them for four years now. At first, the MRIs were every six months. Then, because the doctor was seeing no change, we went to an annual schedule. And, if today's MRI continues to show no negative change in the tumors, I will have to make the decision whether or not I want to go to an 18 month schedule.



The MRIs are so very, very hard for Ashley and for me. She gets extremely anxious the minute we pull into the hospital parking lot. And then it goes downhill from there....I'm not going to go into the details because I don't want to think about them right now.



I just want it all to be over. I want to see Ashley's eyes open and a smile touch her lips. I want the tumors to have magically disappeared.



Your thoughts and prayers would be most welcome today...

Tears

The child’s father said that he took care of his son for many years and that he just started to look at him as no longer his son, but rather just an inanimate object.



The child was seven years old and had cerebral palsy as well as some other unspecified disabilities. He was fed through a G-tube and was unable to speak.



The child’s father took a hacksaw and decapitated his son and then purposely left his son’s head in a position that his wife would discover. Before the wife, who was out running errands, returned, a volunteer firefighter drove by and spotted the boy’s head by the side of a city street. When the police arrived, the child’s father was standing on the porch and told the police that it was just a crash test dummy and that he had done it as a joke. The police found the rest of the child’s body in a white trash bag nearby.



The boy’s name was Jori.



His father, in my humble opinion, should rot in hell.



I’m so sorry, Jori. I wish you could have been my little boy.



Louisiana Child Killing

Special Exposure Wednesday

My oregano plant started as a three inch little sprout. Now two years later, it is shrub size. It's taking over my garden way too much so I decided to just let it go to seed this year before I pull it up. The bees LOVE the flowers! When I asked Chip to pull it up for me, he said "No way!" I guess we will have to wait for cold weather when the bees head south for the Winter!

Signing in a Hearing World

When we were returning from our trip to Williamsburg this past Saturday, we decided to stop for lunch at the Candle Light Restaurant. It is an out-of-the-way little place that is frequented more by locals than tourists, and on previous trips we were impressed by the home-style quality of the food.



Although the building had been remodeled a bit (and made more accessible!), the owner and staff were the same as was the menu. A server came by and took our orders, and right after that another person stopped at our table and asked about our drinks. I mentioned that the server had taken the orders, but this person said she would get the drinks.



I noticed something in her speech, a quality to her voice that seemed both familiar and different at the same time. I couldn't quite put my finger on it. But the next time she stopped by our table, I figured it out!



She had apparently seen all of us signing to each other, so when she returned to the table, she also signed. She was Deaf or hard-of-hearing and the quality I heard in her voice was that of a person who leans to speak without fully being able to hear.



Ronnie was thrilled! He loves to come across people who sign, people with whom he can easily communicate. I love to see him get so excited, but it also is a bit sad.



That which most of us take for granted - the ability to converse with others - doesn't come easily to someone who is Deaf and lives in a hearing world. I wonder if it bothers him, or if he is just accustomed to it...???