Friday, August 31, 2007

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!

Tuesday, August 28, 2007

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!

Sunday, August 26, 2007

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.

Friday, August 24, 2007

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.

Wednesday, August 22, 2007

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!

Tuesday, August 21, 2007

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!

Monday, August 20, 2007

Family Reunions

During the 1950’s and 1960’s, children with disabilities were routinely sent to live in institutions. Most had some sort of developmental disability -- Down syndrome, retardation, cerebral palsy or autism. But some were also sent just because they seemed ‘slow’. And many had other secondary disabilities requiring wheelchairs or other mobility aides. As heartbreaking as that situation is to a parent like me who is raising children with even more significant disabilities, I can somewhat understand why those parents of the past made their decisions.

Parents in that other era did not have the supports available to them that are available to parents today. Also, pediatricians and other professionals were advising parents that institutionlization was the best choice for the child. We know differently now, but those early parents were operating without the knowledge we have. The bright light in this dark scenario is that many siblings of those children sent to institutions are now looking for and finding their family members.

The Arc, a national advocacy organization for people with intellectual and developmental disabilities, has created a new online family registry and search service, the FindFamily Registry, to help with such reunions. Read the CNN story about the FindFamily Registry, and the story of one man's search for his sister, Molly.

If you are someone who has lost touch with a loved one who was sent to live in a state institution for the developmentally disabled, I urge you to check out the FindFamily Registry. It's a free service from the advocacy and support groups ARC and ArcLink and may be the connection you need for your own family reunion.

Saturday, August 18, 2007

Princess Pink and Glam Girl

At some point in her life, every little girl needs to spend time with princesses. Brooke, the beautiful young girl I wrote about in July, got that opportunity today. Amy and I, while certainly not real princesses, did our very best to present a royal appearance and bring a smile to Brooke’s face. I think we succeeded.

Friday, August 17, 2007

Dreamcatchers Family Retreat

I wanted to share some photos from the Dreamcatchers Family Retreat held last week. Just a reminder, this is an annual retreat held for families in Virginia who have a family member with deafblindness. Our organization feels it is very important to provide one-on-one childcare for every child attending with their family - whether the child has deafblindness or not. By doing this, we free up the parents to benefit fully from the retreat - not to mention that childcare is a blast for kids and workers both!

Thursday, August 16, 2007

Bank Deposit

Ashley had dental surgery today – two teeth extracted. Everything went pretty well with one exception – the dentist had a tough time getting the extraction site to stop bleeding. After pressing gauze to her mouth for about an hour after the surgery, the bleeding had slowed enough that Amy and I decided to bring her home. However, the bleeding continued for another couple of hours at home.

She is doing fine now – still groggy from the anesthesia – but the excessive bleeding has me really worried about her upcoming brain surgery. Aren’t there things doctors can do to stop or slow bleeding? At least there is one comforting thought – her brother, Chip, and I both have the same blood type she does. I’m calling the doctor tomorrow to see if we can ‘bank’ some blood for Ashley’s surgery…

Thankful Thursday

Today I am thankful for:

  • The fact that in a week and a half, I get a week’s vacation

  • That I had Amy to help me today with Ashley – getting her to her surgery, offering support during the surgery, and helping me get Ashley home. I could not have gotten Ashley in the house without her help. I really, really need a ramp built….

  • Barbecued chicken and corn on the cob

  • That I was finally able to figure out and repair a nagging problem with my laptop computer

  • That in just two days, I will be visiting Lynnette and Brooke

  • That my house payment went down $75 for the next twelve months

  • That the Department of Education is asking parents of children receiving special education services what their opinion of those services are. Now, if there will just follow through with the survey results, I will be even more thankful.

  • That it has been so hot that our grass is not growing. Slow growing grass = less mowing!

  • That Rock won on Hell’s Kitchen. He was my favorite and he is from my home state!

  • That there have been no hurricanes threaten our area yet this year

Wednesday, August 15, 2007

Butterfly Summer

This has been the summer that my little caterpillar turned into a butterfly. My sweet Ashley, the child who in the past would get very anxious when venturing out in a crowd, now gets very bored staying home. On the weekends, she is adamant that we must “go car” as she signs in American Sign Language. And, one trip out a day is not enough. We must “go car” at least once in the morning and once in the afternoon.

This girl, who in the past didn’t relate well to people she didn’t know, now acts as if she has never met a stranger. She will greet and speak (sign) to almost everyone whose path we cross. She will ask acquaintances to play video games with her, and will horseplay with all the other kids in the pool. This girl, who seemed to never notice the fact that we have a dog and two cats living in the same house with us, will now let the cats sleep with her and will feed the dog ever so gently from the dining room table. This girl, who used to prefer toys, loud, obnoxious toys, now will spend hours looking at books or watching her favorite shows on TV. To me, having to look at TV or a book with one good eye less than an inch from the screen or page would be exhausting. Ashley doesn’t seem to mind.

And her clothes – articles of clothing which in the past only had to feel like a teeshirt – now must be exactly the right color on exactly the right day and paired with exactly the right accessories. Now a bath is not complete without some sort of bath product that bubbles, changes colors, and smells good. Hair product has become a staple and hand lotion must be applied meticulously. In short, she has turned into such a girly girl!

Perhaps it’s puberty – perhaps it’s developmental progress – perhaps it’s just Ashley being Ashley. But, it sure is fun to watch my little butterfly testing her new-found wings!

Tuesday, August 14, 2007

School Supply List

I found the following post on a Special Ed Law blog and loved it! It is definitely worth reprinting. I just wonder if the things on the list would qualify for Virginia's tax-free school supply weekend?

School Supply Lists For Kids With Special Needs
by Lori Miller Fox

It’s that time of year again. Back to school. When parents all over the country, list in hand, ambush the stores in search of the perfect school supplies. Red, plastic, 8x12 pronged folder with pockets, green wide-ruled five-subject spiral notebook. Every subject has a specific pencil, every class a unique pen. But somehow those itemized lists never seem to apply to my son. Just seeing the word “Elmers” used to get me unglued, the word “ball point” would start me balling, and the word “scissors” would cut me to my very core. The only thing that seemed remotely useful was the mandatory box of Kleenex tissues to wipe away the tears, so I always bought an extra for my own supply closet.

After years of suffering in silence, I’ve put together my own, more functional list for kids with special needs, their families and the staff who “just don’t get them”.

  • Downward spiral notebook - a handy place for teachers and therapists to record a student’s regression and lack of progress.

  • Nap sack - a book bag which conveniently doubles as a cushion to be used by staff as a pillow when they’ve fallen asleep on the job.

  • Miscalculator - a battery-operated problem-solving device for staff with very low expectations.

  • Number twenty-two pencil - a writing tool used by special needs children who are not the school’s number one priority.

  • Moral compass - an instrument that should be used by school staff to measure their degree of guilt and irresponsibility when they are not doing what’s best for their students with special needs.

  • Organ-izer - a place to put a heart after the school system has ripped it out of a parent's chest.

  • Three-ring circus notebook - a binder used to display a student’s laughable work product.

  • Right-out - a bottle of liquid paper used to cover up a child’s legal rights.

  • Bull point pen - a writing tool used by staff to keep parents apprised of how “well” their child is supposedly doing at school.

  • Destruction paper - colorful paper used to pass off art projects made by an aid as a child’s own.

  • Eleven-inch ruler - a straight-edged instrument used with students that staff think don’t measure up.

  • Hanging files - a place where biased evaluations are kept until they can be compiled and used to hang a child out to dry.

  • Mask-on tape - a roll of adhesive strips used to cover the smirks on school staff members’ faces when professing their committment to your child’s education.

  • Pest-it notes - yellow sticky-back slips of paper that can be attached to notebooks and letters of detention on which can be written what a pest your child is at school.

  • Subjective dividers - Deep-seated misconceptions and beliefs housed inside the minds of ignorant school staff and administrators that separate children with special needs from their neurotypical peers.

  • Scruple remover - a device not needed by many school employees, as most of their scruples have already been removed.

  • Make-up-their-own-ruled paper - sheets on which school staff explain why they can’t accomodate your child, usually starting with ”that’s the way we’ve always done it.”

  • Lead balloon pencil - tool used to write things about a child that don’t go over real well with the parents.

  • Low lighters - transparent markers used to emphasize the low points in your child’s academic career.

  • Never let ‘em see you sweatshirt - Mandatory parent dress code at all IEP meetings !

Monday, August 13, 2007

Never Let It Happen Again

The following story is not new, but I stumbled upon it again today. It is still every bit as relevant today as it was in 1993, and it is a story that should never be forgotten:

Tracy Latimer was a 12 year old girl with cerebral palsy who lived with her family on a farm near Wilkie, Saskachewan. On Oct 24, 1993, Tracy's father, Robert Latimer, decided that Tracy's life wasn't worth living. He placed Tracy in the cab of his truck and fed carbon monoxide into the cab. Initially he claimed that Tracy died in her sleep but later confessed that he killed her for merciful reasons. Robert Latimer was tried and convicted of second degree murder and received a sentence of 10 years in prison.

A Credo for Support was born from this story of Tracy Latimer. It is incredible in its written form, and even more powerful in this spoken form. The following is spoken by members of People First of San Luis Obispo…

A Credo for Support

Sunday, August 12, 2007

Including Everyone

This is the last post about the conference I attended last week, I promise. I just need help figuring out something, and I hope some of my readers will have ideas.

As I mentioned, childcare services were provided for the parents that attended the conference. Most of the parents who attended are members of our state-wide family support group for families with children who have deafblindness. This support group has a family retreat every year, and this year we decided to hold it in conjunction with the conference. At every retreat for the past eight years, we have provided childcare, and things have usually gone very well. We had a situation this year though that has thrown us for a loop, and we need to figure out how to solve it.

One of the children registered for childcare was a teenaged girl that we have only seen once before. However, several parents have been in contact with the girl’s mother this past year because of school problems. (I wrote about her in a post back in May - she is the daughter of Mom2 in that post.)The girl attended a residential school for the deaf and blind – the absolute worst school of this kind. She began at that school when she was much younger, yet still she has not been taught to communicate with a formal communication system. Without a formal communication system, this girl has resorted to aggressive and self-injurious behaviors to communicate. She was expelled from the residential school because of those behaviors, spent a while in a psychiatric facility, and hopefully within the next few weeks will be moving to another, much more appropriate out-of-state residential school. (The choice for residential services is her mother’s. It is not a choice I endorse.)

When the family registered for the retreat, we didn’t hesitate to agree to provide childcare. We (the childcare director and I) decided we would assign two people to be with the girl at all times, and these two people were extremely qualified. We also made plans for quiet time if necessary, and worked hard to provide other supports we thought she might need. Things went well for the first ½ day.

Since this girl has no formal communication, she wasn’t able to tell us that as the first day progressed, she was becoming more and more anxious. None of us knew her subtle signals, and because her mother didn’t drop in during the day to check on her, we failed this child. Right after lunch, as everyone was preparing to go swimming in the hotel pool, the girl became physically aggressive. In a matter of seconds, she became an extreme danger to herself as well as the other children. One of the aides assigned to her was a teacher who had been trained to deal with similar outbursts, and her training kicked in. However, three people were needed to physically restrain her and protect the other children. During this restraint, the girl bit one of the aides twice – a bite that tore muscle and may have caused permanent damage to the aide.

We had to tell the mother that we could no longer provide services for her child for this retreat, and that bothered me more than I can say. More than anyone, we need to be able to help other families. Any one of us could find ourselves in a similar situation, and after having been given up on by the many professionals with whom we deal, many of us feel the other families are our last hope for understanding and assistance. Yet we couldn’t provide that to this family.

So, I need ideas. I don’t want to exclude this family. I don’t want the family to feel like they are not welcome at future retreats. We need a plan for this family and for other families, mine included, should this situation arise again. Does anyone have suggestions…?

Saturday, August 11, 2007

Lost Opportunity

I attended a three day conference on deafblindness last week. Experts had been brought in from across the United States, and several sessions ran concurrently each day. The majority of the attendees were teachers, social workers, and case managers. A handful of parents also attended, and for those parents, childcare was provided during the day.

The person in charge of childcare for the conference was incredible. She had recruited a very experienced staff of workers, and she had set up the perfect room for children with dual sensory impairments. She covered every base, and although I have attended many conferences like this in the past where childcare was also provided, this year was the best ever.

Something surprised me though. Not one of the professionals ever stopped by our childcare room. Not one of them asked to meet or interact with the children. Not one of them even asked any of the childcare workers how things were going. The childcare room was not tucked away out of sight. It was in clear view of the attendees, and during lunch breaks, everyone ate together – parents, children, childcare workers, and professionals. But the parents, children, and childcare workers sat at separate tables. Even during this relaxed break time, no professional asked to meet or interact with the children.

Does that seem strange to anyone other than me? Here were professionals attending a conference on deafblindness. They were being trained in many issues relating to the education of children with deafblindness. There were learning about the value of communication and inclusion. Yet these professionals were neither communicating nor including. Here was the perfect opportunity to learn more from a parent’s perspective – to observe the children and ask questions about real life situations – to put into practice what had just been discussed in the conference sessions. Yet the opportunity was passed by.

I was very disappointed, very disappointed indeed.

Wednesday, August 8, 2007

Thankful Thursday

For the majority of this week, I am attending a conference on deafblindness - dual sensory impairments. Today's list of those things for which I am thankful come from that conference. Today I am thankful for...

  • Air conditioning in the conference hotel. The temperature outside was 102 today!

  • All the wonderful childcare workers who have been helping with the kids whose families attend the conference. A lot of the children have very challenging behaviors, yet our wonderful childcare workers continue to return each year for this conference.

  • That at this conference, rather than in normal day-to-day life, being different is a good thing, a thing that is celebrated!

  • A chance to rejuvenate, a chance for hope to be reborn

  • That Ashley sang the 'woof woof' in the Doggie in the Window song at EXACTLY the right moment - pretty cool for a kid that is deaf

  • That Amy, Toni, Stephanie and Renee brought Ashley home and put her to bed so I could stay and network with other parents.

  • That I learn something new everytime I attend a conference like this, something I can use to make a difference in my child's life and the life of many other children with deafblindness

  • Free lunch and dinner for my family, and especially not having to cook

  • That so many of our childcare workers are excited about learning sign language!

  • That Ashley has turned into a social butterfly this summer. She is comfortable with so many new people, loves to 'work' the crowd, and doesn't lose her cool as much in strange places.

Tuesday, August 7, 2007

"I'm Melting....."

One of my favorite bloggers is Joel at NTs are Weird – An Autistic’s View of the World. When I have spare time, I like to browse through his older posts, and yesterday, I found one I particularly liked. Joel does an excellent job of describing the causes of meltdowns and shutdowns. Although Joel talks about meltdowns and shutdowns from the perspective of a person with autism, I believe his words apply to people with other disabilities as well. I especially liked this passage:

To understand the cause of a meltdown/shutdown, we have to look a bit further than the behaviorists typically look. They’ll see a kid, who after being called a “retard”, punches the tormentor in the mouth, causing him to lose his two front teeth. They then assume that being called a retard was the motivation for the behavior, further determining that the result therefore was totally out of proportion to the insult.

Well, that’s well and good, but it isn’t the way we work. Often, the little insults, problems, and stresses will build up over time, until the point where one - even something very minor - will be just enough to make it too much to handle.

He has really nailed it on that description, especially as it applies to children in school. I have requested numerous times that a functional behavior assessment be conducted for Ashley. Ashley can display negative, self injurious behavior at times. She can have meltdowns, and can ‘stim’ to beat the band. My requests for the assessment are grudgingly met, and usually conducted and conclusions drawn in the course of an hour. My school district employees do exactly what Joel described – they reach a conclusion before they have enough information.
So, as we face the start of a new school year, and Ashley will have a new teacher, a new aide, and more-than-likely new peers in her class, I need to figure out how to introduce everyone to this concept. I have to convince them to not take things at face value, and to understand that Ashley is not consciously choosing to have a meltdown. Maybe I should just send the link to Joel’s blog entry to them!

Monday, August 6, 2007

Paying the Piper

There are so many things about the CNN story linked below that I just don't understand.

I've been through the adoption process three times now. It was grueling, and not an easy thing to accomplish. How did Mrs. Leekin get through the adoption process 9 times without at least one social worker noticing that things were amiss? The story tells how Mrs. Leekin used adoptions as a way to make money. How in the world can that happen? I am further in debt now that when I had only my one birth child, and I do receive subsidies for my other three. I realized early on that the subsidies help, but they in no way cover all the expenses for raising a child properly. Maybe the key word here is 'properly'.

Swim With Me

Ashley loves fish, always has. Perhaps she has extrasensory perception and knew long before British scientists that fish could actually one day help the blind to see. Check out this article from Yahoo News:

Saturday, August 4, 2007

Here Stuff, There Stuff, Everywhere Stuff

My 14 year old son, Corey, has been gone the last two weeks working for the Youth Conservation Corps. He’s got one more week before he comes home, and as a surprise for him, I decided to clean his room from top to bottom. I admit that it was as much for me as for him, but still I think he will appreciate it. During the cleaning process, however, I discovered some unusual things.

Corey never throws anything away – anything – packaging, newspaper comics, candy wrappers, water bottles, even the broken recorder from 4th grade (he’s now in high school). Every school paper from the two years he has lived with our family was stuffed into a cabinet in his room. Doodlings from when he wasn’t paying attention in class were there also. And then there were lots of little unidentifiable things – pieces of other things I imagine. Is all this hording just laziness or some emotional damage from his past?

Corey spent the first eight years of his life living on the streets of Baltimore with his drug-addicted, prostitute birth mother. I’m sure he had very little he could call his own during that time. He had to be able to carry all his possessions around with him at all times. Is that why now he doesn’t want to part with anything?

I don’t understand this, but I sure would like to. I don’t even know where to start doing research. Is this a question for our pediatrician, or should I get an appointment with a psychologist or psychiatrist? It hasn’t been a huge problem yet, and now I will know to do a thorough cleaning every so often, but I worry about when he graduates and moves out on his own.

Am I making too much of this?

Friday, August 3, 2007

Blooming Things

As I sat on my front porch last night enjoying an unusually pleasant August breeze, I really looked at my yard and all the plants growing in it. I noticed that many of the plants and flowers had flourished despite the near drought conditions we have experienced this summer. Perhaps it was because I watered and fed and clipped and snipped and generally did everything I could to help them endure the stress of the hot summer. It dawned on me at that moment that was exactly what I do for my children.

I make sure my children have plenty of food and water, and I make sure it is the right kind of food to help them grow healthy and strong. I snip and clip their environment to make it safe as well as fun. I make sure they get the right amount of sunshine and also darkness for rest. I even mist them occasionally in the sprinkler! While the hot, dry summer stresses my plants, the many doctor and therapy visits, the segregation by schools and recreation programs, the stares and hurtful comments stress my kids. I do all I can to reduce the stress for my plants by tending to their needs, and I do all I can to reduce the stress for my kids by fighting the battles for appropriate educations, appropriate medical services, and inclusion in society.

Ashley is my honeysuckle vine. She grows wildly and moves around to wherever she would like to be. Trying to contain her is wasted effort. Like the vine with its brilliant red blossoms, Ashley’s smile and laugh announce her presence to the world.

Jessica is my rubekia flowers (black eyed susans). She will stay in one spot for quite a while but ever so slowly will move out of her perimeter. Like the flowers, she is bright and showy, announcing to the world her happiness.

Corey is my cactus plant. He grows ever so slowly and can at times be quite prickly. But like the cactus to a stranded desert traveler, his inside holds nourishment for the soul. Getting to that center is often difficult though.

Chip is the huge red maple that shades the front of our house. He is steady and grounded, strong but ready at a moment’s notice for fun, as is the tree which welcomes a climbing child. Different seasons bring different visions of his color and personality.

I am so blessed that I have been given the opportunity to nurture my special children and to watch them grow and bloom. The beautiful, strong flowers and plants in my yard stand as representatives to the value of tending things wild – be they honeysuckle vines or children!

Wednesday, August 1, 2007

Myths, Part 2

As a follow up to yesterday's post about the myths surrounding deafness, today I am writing about the myths that exist about people with blindness or visual impairments. My desire and need to write these two posts grew out of the frustration Ashley faces on a daily basis from dealing with people who don't understand, or refuse to believe she is blind. She does compensate very, very well for her blindness, and I can understand why some people would assume she can see better than she does. But blind she is - she has accepted that and would really like others to accept it.

MYTH: Blindness is a tragedy. For people who suffer from blindness, life has lost all meaning.
With proper training and opportunity, the average person who is blind or visually impaired can compete in terms of equality with the average person who is sighted. In other words, the person who is blind or visually impaired can be as happy and lead as full a life as anybody else.

MYTH: People who are blind or visually impaired are helpless and require supervision in their daily activities for safety’s sake.
People who are blind or visually impaired are by and large much more independent than others give them credit for. Many are mobile and independent. Many view their blindness as a mere physical nuisance and not a disability.

MYTH: All people who are blind or visually impaired see nothing at all. Being blind means having no vision at all. People who are blind or visually impaired are always in total darkness, seeing nothing at all.
Only about 10-15% of people who are blind or visually impaired “see” total darkness. The majority of people who are considered blind have some sight, rather than no sight at all. That is, they have some residual vision, whether it is light perception, color perception, or form perception.

MYTH: A person’s other senses become more acute after the onset of blindness or visual impairment. People who are blind or visually impaired have “super” hearing.
Blindness does not entail compensatory powers. Although one may learn to pay greater attention to one’s hearing or other senses, those other senses do not actually organically improve.

MYTH: People who are blind or visually impaired often possess a sixth sense and are psychic or able to foresee the future. All people who are blind or visually impaired are musically gifted.
For people who are blind or visually impaired, there are no miraculous new powers awakening, no strange new perceptions, no brave new worlds to explore.

MYTH: All people who are blind or visually impaired wear dark glasses.
The need for any type of low vision aid (e.g. glasses, magnifier, etc.) is contingent upon the individual situation and preferences of the person who is blind or visually impaired.

MYTH: All people who are blind or visually impaired know Braille.
Only about 5% of people who are blind or visually impaired use Braille. Most use large print, magnification, “talking” devices, and volunteer readers.

MYTH: All people who are blind or visually impaired use a cane.
Less than 2% of Americans who are blind or visually impaired use a cane for orientation and mobility.

MYTH: Dog guides know where to go and how to get there without handlers telling them.
The handlers know where they are going not the dog guides.

MYTH: Dog guides let their master know when the traffic light has turned to green.
Dog guides cannot tell red lights from green lights in traffic. Rather, the person who is blind or visually impaired listens to the flow of traffic, determines when it is safe to cros, and then signals the dog to go forward. However, if a car is coming, the dog is taught to refuse to obey the command.

And just for the record, Ashley is totally blind (sees darkness) in her left eye, has an acuity of 20/2000 in her right eye meaning she can focus at about one inch from that eye, has no depth perception, can see colors and forms, is learning to use a cane, is learning Braille, does not have any magical or musical powers, and is quite happy with her life as it is.

Thanks to the National Federation of the Blind for today’s myth buster information.

Thankful Thursday - A Day Early

Because I am in court all day tomorrow continuing the fight for Ashley's right to appropriate services from her insurance carrier, I am sharing Thankful Thursday a day early this week. This week's list...

  • Lighter rush hour traffic in the summer, probably because of people taking vacations

  • Bacon, lettuce and tomato sandwiches with homemade lemonade with fresh mint from my herb garden

  • Hand sanitizer

  • Freshly starched shirts from the cleaners

  • This week’s bus driver and bus aide for Ashley. They ‘get it’.

  • That I can still wear shorts, a tank top and flip flops without scaring babies and small children

  • Summer rain showers

  • The goldfinches and hummingbirds that have taken up residence in my yard this summer

  • Watching my two cats wrestle and turn into one big ball of multicolored fur

  • Chinese food, especially Kung Pao Chicken