High and Low

She's a middle school teacher. Before that she worked for our state's TTAC, the Department of Education Training and Technical Assistance Center. TTAC's website says their staff will:

•Promote collaboration and teamwork with school teams families and community agencies, to build stronger educational communities.
•Promote access to educational opportunities for all children and youth with disabilities.
•Provide technical assistance that promotes evidence-based practices.
•Remain current in our knowledge of effective practices in the areas of education and technology.
•Deliver quality evidence-based training opportunities to meet the diverse needs of the adult learner.
•Foster a work environment that promotes healthy, human relationships.


The students in her classroom all have the label of severe disabilities. Some are deafblind, some with autism, some otherwise diagnosed.

Last week she directed one of the classroom aides to take the 'highs' to another classroom. It was clear that she meant the higher functioning students.

So now, besides having all the other labels assigned to them by the school district, these students have one of two other labels - High and Low.

You know what, Madame "Teacher", and I use that term loosely, I have a few labels for you....

Listen To The Real Experts

Catherine's cousin said, "People who are the experts on disability are not the doctors. It's the people with disabilities." Well said, Catherine... My state legislators need to view this video...

My Cat in the Closet

**originally posted January, 2009**

I wrote last week about embracing HOPE as my theme for 2009. One of the commentors on that post and one of my favorite bloggers, Michelle Morgan-Coole, at the blog, Free Falling, shared some very honest thoughts about what hope means to her.

She said ,” Sound strange, I know, but I have come to the conclusion that hope is bad for the soul. Just my own personal experience, born from living with the seizure monsters for the past 14 years, when everytime you dare begin to hope they might actually be gone (surely close to two years without or even six months must mean something?) they return with a vengance.”

For me, the opposite is true – hope is the only thing that keeps my soul alive. It would be so easy for me to resign myself to Ashley’s special medical needs. But had I done that when I first adopted her at age 2, her doctor’s predictions probably would have come true.

She wouldn’t be walking and running. She wouldn’t be communicating. She wouldn’t be eating. She would probably not be alive.

Hope was the force that propelled me through endless hours of therapy, doctor visits and hospital stays. Hope became my belief that Ashley was very capable of becoming more than anyone else ever believed she could become. Hope is what keeps me fighting school districts and insurance companies. Hope is the battle won for ESY (Extended School Year) services. Hope is the battle won for an accessible bathroom built at insurance expense.

Hope is what allows me to dream of her future, a future filled with love, marriage, a job, and maybe even children. Hope is the comfort in my heart that says she will be ok even after I am gone.

Continuing to nurture that hope is not easy. Like Michelle said, when the seizures keep coming, even after an extended seizure-free time – when the medical conditions don’t worsen but also don’t get better – when almost everyone we meet treats Ashley as less a being than she is – finding and holding on to hope is a struggle.

But like my cat who continues to run into the same closet day after day even though she keeps getting locked in accidentally, I have to keep believing and searching.

Hope is my cat in the closet…

Special Exposure Wednesday

Wheelchair basketball has ended for this season, but that doesn't mean Ronnie is just going to lie around and do nothing! He has moved on to a sport that requires a helmet and lots of padding, a sport in which it is ok to hit other people with sticks! Lacrosse!!! Just what a mother needs....

A Single File Existence

**originally posted in 2009**


I guess I never paid attention to this before.

Back in 2006, I wrote about some adult group home residents that I saw at one of our local malls. I wrote about their walk through the mall – “I saw the two women in charge leading the slow-moving group, and the four clients trudging slowly behind, not seeming the least bit interested in their surroundings. They were in almost a single file line, and at the end of the line was Jack, working desperately to pull his underwear from his behind where it had apparently gotten ‘stuck’.”

Then yesterday, while shopping at Walmart, I saw an older gentleman with Down Syndrome, probably in his 40’s, shopping with someone who appeared to be his mother. I’ve seen the two of them before out and about in some of the same neighborhood places I frequent. This gentleman followed his mother in single file through the store, and has done the same thing every time I see him.

Also yesterday, I drove past an apartment complex near my home, apartments where our local community service board assists adults with intellectual disabilities live as independently as possible. I often see some of the residents making their way to the Walgreens or the McDonalds on the corner. Every time I see them, no matter how large their group, they are walking in single file.

Why single file? Why not walking side by side, chatting, laughing or even arguing? Instead, their faces are frozen with no expressions – they never talk to each other – they just walk, one behind the other, to their destination and then back home again.

How did they learn this behavior? Is this what we have taught them is the only acceptable way to be a part of their community?

All this saddened me, and I plan to make sure my children know they don’t have to walk in single file. They can run and skip, they can link arms or hold hands, they can talk and laugh and yell sometimes. I don’t want my children, or for that matter, any other person with a disability, to have a single file life.

Tuberous

**originally posted in 2007**

One of the tools Ashley uses during her speech therapy sessions is a Mr. Potato Head toy. With all his different, colorful body parts, the opportunities for both receptive and expressive language are many. However, Ashley had her own agenda in last week’s therapy session with Mr. Potato Head.

Instead of putting Mr. P. together in the traditional fashion – you know, eyes where eyes are supposed to go, arms coming out of the side of his ‘body’, feet on the bottom, mouth on the lower front, etc., all Ashley wanted to do was stick different sets of eyes in every hole on the brown spud. She wanted no parts of arms, legs, hats, mouths, ears or mustaches. It was eyes everywhere.

Sometimes trying to figure out how her creative mind works is difficult. By channeling Mr. Potato Head into a vegetable with many eyes, was she making a statement about her own vision impairments? (For new reader, Ashley is totally blind in her left eye, and her clinical vision measurement in her right eye is 20/2000. She can focus at about an inch in front of that eye.) Does she wish she could stick in some more eyes – eyes which would help her see better? Or was she just making a joke – you know about potatoes having “eyes”? Either scenario is quite possible with Ash.

All the talk about Mr. Potato Head did make me start to look around the Internet to see if I could purchase just eyes for him. While I didn’t find anyone who was selling just the eyes, I found lots and lots of different accessory kits for the dapper spud, and I learned a lot about Mr. P’s life.

Did you know Mr. Potato Head has his own website? Check it out and find out everything you ever wanted to know about his origins. Also, Mr. Potato Head was the first toy ever advertised on TV – I didn’t know that. Mr. Potato Head has also been a drug smuggler, a racist statue, a balloon in a parade and the subject of a comic strip, and is the star of many YouTube videos. Here is just one…. And finally, I found a really good joke about the tuber:

Why is Mr. Potato Head the perfect man?

He’s tan, he’s cute and if he looks at another woman, you can rearrange his face

And here I was thinking Mr. Potato Head was JUST a toy…

A Short Break

I've decided I need a little break - time to refocus, time to relax, time to read and not write. Just a short break of a week or so. In the meantime, I will be recycling some of my old posts (can't believe I've been writing this blog for 6 years now!!!!) and perhaps sharing some new pictures. I sincerely hope you will stick around until I come back to my regular writing schedule!

My Crappy Life

This is my last post of the week talking about things that have made my life as a special needs parent a little easier.

My life is full of crap...but that is not a bad thing. It means every child's digestive system is doing what it is supposed to do. Believe me, having a non-crappy life is much, much worse than a crappy one.

It seems I am constantly mixing Miralax, buying glycerine for 'bowel management', searching for the plunger, cleaning the bathroom, making sure the bidet toilet seat is functioning, shopping for the best price for incontinence products, and going through wipes and toilet tissue at an alarming rate. But again, this isn't a bad thing.

What is a bad thing is expensive, small baby wipes. I go through a lot of them, but I always wondered if there was a better solution. And there is!

I found this product called Certainty Adult Washcloths. They are just like baby wipes but bigger, softer and stronger. And the price is comparable. I can always find them at Walgreens, and they are almost always on sale.

I use them for my crappy life. I use them to wipe sticky faces and hands. I even use them to get spills out of clothes and carpet. I always have a pack with my in each child's backpack, as well as strategically placed around the house.

So, if you have a child that is not a baby but who still can benefit from wipes, I wholeheartedly recommend this product. And just for the record, Walgreens did not ask me to review their product, and provided no product or compensation to me. But I am more than willing to let them help out with my crappy life anytime they would like!

A Very Simple Thing that Makes a Big Difference

When my children were babies, their diaper bags were permanently attached to my shoulder. I was prepared for almost any occurrence whenever we were out and about. But as my children have gotten older, and because they still need a lot of supplies whenever we leave home, diaper bags just seem way too juvenile. I know that Ronnie, for example, would not like to pull his catheters out of a diaper bag covered in cartoon trains. Nor would Ashley be thrilled with a bag featuring Dora the Explorer.

So my solution has been to move to a backpack.

Teens are often seen carrying backpacks. They fit very nicely on the handles of a wheelchair. They hold a lot of stuff just like diaper bags did, and using one does not mark my children as any more different then they already are.

Backpacks come in cool colors and some even have ‘wet’ compartments for storing wet clothing. Pulling something out of a backpack can be done discretely, and I believe they are so commonplace that people don’t even think twice if they see a teen going into the bathroom, for example, with one.

Of course, some of the places we go (theme parks, for example) do insist on looking into the backpacks, but I think they would do the same thing with a diaper bag. And as long as they don’t pull out Depends or catheters or syringes for the world to see, I don’t mind them looking through the bags.

Backpacks help identify my teens as peers to other teens, and they hold everything that is needed for any trip away from home. It’s an accommodation that we parents don’t often think twice about, but using one over a diaper bag makes a real difference to our older children!

Special Exposure Wednesday

My little peach tree is LOADED with baby peaches! Now if I can just keep the squirrels away....

Dutch Door

Ashley is a child that likes to explore. She is also very strong willed. If she doesn't want to do something, I am hard pressed to convince her otherwise. And staying in bed and in her room at night is just one example.

Left to her own devices, she would get up in the middle of the night, go help herself to something from the fridge, and then proceed to the family room to engage in some noisy pursuits. Since she is blind and deaf, I worry about her safety during those times.

When she was much younger, she had an enclosed bed. But once she learned to climb over the top and slide to the floor, I moved to using a baby gate at her bedroom door. That lasted maybe a year or two, and then she figured out how to unlock and escape. My latest attempt at keeping her safe in the middle of the night is a Dutch door.

Two years ago, I had a Dutch door installed in place of her regular bedroom door. When it is her bedtime, I keep the top part of the door open and close the bottom part. Doing it like that means I can still hear her if she needs me, but it also helps to keep her from wandering. I did have the lock placed on the outside of the door thinking she wouldn't figure that out and be able to unlock it herself. It took her all of 45 minutes to figure that out. So now, I have a slide lock placed at the bottom of the outside of the door. That solution has worked for two years now, but I never know when the little smarty pants will figure out how to open that.

But for now, I can sleep easily knowing she is safe in her room in the middle of the night!

I have heard that any door can be adapted to be a Dutch door, but because Ashley is such a strong little cookie, I opted for a solid wooden door. It wasn't cheap, but for two+ years of restful sleep, it was well worth the money!

Just another of those innovations we parents of children with special needs have to devise!!

Swash!

This week I am going to write about some of the things that have made my life as a mom to children with special needs a little easier. These will be the more obscure things - not wheelchairs, standers, hoyer lifts, etc - but things we might not think of right off the bat. And, if you have any products to share that have helped you and your children, please feel free to share!

In 2008 I wrote about one of my favorite things - my CleanButt Bidet toilet seat!

It was one of the features of my bathroom remodel, a remodel to make things easier for Ashley. And it worked so well that I have no idea how we existed prior to having it. But alas, four years later, the CleanButt was showing its age and I needed to replace it.

I searched far and wide on the Internet only to discover that the CleanButt company was no more...Even though I initially panicked, I did find that there are some other companies that make a similar product.

The product I chose was the Brondell Swash, and it is every bit as good as the CleanButt, and maybe even better. (Brondell has not asked me to review their product nor provided their product to me. I paid for it with my own hard earned money.)



The Brondell is sturdier, it looks nicer, and it was cheaper. There are more expensive models, but I opted for the one without the blow dryer. The one I got does have heated water, and cusomizable positions and water strength. The directions that came with it for installing it were simple to understand and very complete. Because we already had the electrical outlet behind the toilet, Chip was easily able to get it installed in about 30 minutes. (Brondell does make a model that doesn't require the electrical outlet, but the water isn't heated.)

I wholeheartedly recommend this product for anyone caring for a person with a disability - young or old. It has made life so much easier for me, and so much more respectful for my two kids with disabilities.

Happy Friday!

I do a lot of laundry in my house. At least two loads every weekday evening, and too many loads to count on the weekends. That means I end up with a whole lot of dryer lint. And because I have always felt that I should do something other than just throw it away, I started searching the Internet. Here is what I found! Now if I just had as much time as I have dryer lint....

Sad

Today I am sad about something. It may seem like a small thing, but still today it bothered me.

Ashley will never be able to see a real rainbow.




Rainbows have always thrilled me. It's like a special surprise at the end of a rain storm. When I see one, I feel lucky somehow, like someone has given me an unexpected gift.

I know she can see small pictures of a rainbow but never the real thing - never the surprise, the joy, the unexpected smile that appears along with the lovely display of colors.

It makes me sad....

Special Exposure Wednesday

Our little corner of the world has been taken over by inchworms. They hang by thin threads and sway back and forth in the wind. The wind up in the strangest places like your hair, the kid's backpacks, and the dog's ear. But there is some good news - we have the fattest birds around!

Paging Doctor Wonderful

Ashley had her 6 month visit with her neurologist last week. His bedside manner could be described as anything but good, but we have been seeing him since the day after I brought her home at age 2. There are other pediatric neurologists in town some of whom I have heard are very good. And, they probably wouldn't scare Ashley like her doctor did when he decided to dye his gray hair jet black. They probably also wouldn't question everything I suggested or viewed my comments with the slightest disdane, and their offices might be a tad more accessible for wheelchairs.

But we have ever switched doctors - never even considered it. Why?

Because I trust Ashley's neurologist. He was at her beside the Christmas Eve I almost lost her to a status seizure. He always calls me back if a seizure crisis happens, and now 15 years after we first visited his office, Ashley has almost no seizures, and the medications she takes are one without too many negative side effects.

He has done a fine job of keeping my daughter alive even if he hasn't been all warm and fuzzy. I'll take alive over that any day. But all these thoughts and that visit last week made me start wondering. How do we parents of children with complicated medical issues decide which doctor's hands we choose to place our children's lives?

Yes, there are often insurance issues that dictate a smaller number of available doctors, but outside of that, what is important to you when choosing a pediatrician or a specialist?

When it came to choosing a pediatrician, I looked for a group, rather than a doctor in a single practice, and I looked for the maximum hours the group was available for sick visits. The pediatrician group I chose has 'sick' hours seven days a week.

For specialists, I originally chose doctors based on their hospital affiliations and on recommendations from other parents of children with special needs. I have been very, very blessed to find a great group of specialists, doctors I will be sad to leave when Ashley matures and must move away from pediatric specialists.

I am very satisfied with all the professionals that provide care to my children, and very satisfied with the hospitals in my area. I dread having to start over again when my children get older, but am hopeful that those same parents who offered advice when my children were young, will also offer advice as my children turn to adulthood.

How about you? Are you satisfied with your children's doctors? How did you decide which doctors to use? And, do you have any plans yet for when your child is older?

Your Thoughts?

This past Friday evening, I did my weekly grocery shopping at WalMart. I know, I know...Friday evening at Wally World? I must be crazy. But I saw something there and wanted your opinion.

As I walked up and down the grocery aisles, I noticed a family - 4 children - two older teens, one girl that looked to be aorund 8 years old, and a boy who appeared to be about 12 or 13 years old. The group was being herded along by one of the mothers you just know rules the roost in her family, one of those "Don't you sass me, boy!" type of women. The children were following along behind her, not a one of them doing anything they shouldn't. But apparently one of them had done something he shouldn't.

The boy who looked to be 12 or 13 years old was wearing a sign, an 8 1/2 by 11 piece of paper that had the message "I like to steal" written in bold marker. It was pinned to his shirt just below his chin. His eyes were cast downward, and he moved with leaden feet.

So what do you think? Apparently this child had tried shoplifting and had been caught. His mother felt wearing the sign through the store was appropriate punishment. What do you think? Would you do this to one of your children caught shoplifting? Do you think the punishment fit the crime? Do you think wearing the sign would make the child think twice the next time he might have the urge to help himself to something that was not his?

Just wondering....

Coming Home

Finally, a decision was made yesterday. Ronnie will be coming back to our neighborhood school for the next school year.



At the end of last year during Ronnie's IEP meeting, I was sold a bill of goods. I was told that the new zone program for hearing impaired students would provide Ronnie more of a Deaf culture experience. That didn't come to be....and Ronnie missed his friends at his old school. I won't list all the issues and reasons why I wanted him to transition back, but I will say that he was very happy at yesterday's meeting when the decision was made.

He will now attend the school from which his two brothers graduated and the school where his sister still attends. The staff at the school is very excited to have him back, and he has been texting his friends to tell them the good news.

Sometimes what looks like a good approach actually isn't. However, when one looks at the 'whole' student, not just the disability, the right approach is clear.

The Future Is Now

Judge Gibney, please sign the Department of Justice agreement and help Virginia to move to a community based system of care. The agreement is important because it would transform Virginia’s system of care for people with intellectual and developmental disabilities (ID/DD) from one that is reliant on large segregated institutions to one that is focused on integrated, community-based services. What happens to people with disabilities in institutions is unspeakable! I don't want to read anymore reports like this one excerpted from the Virginia Office for Protection and Advocacy Amicus Curiae brief:

In 2007

• A training center staff member used sticks and other objects to beat at least four residents on several occasions


• A staff member fed marshmallows to a resident whose chart called for him to eat only fine, chopped, pea-sized food. The resident aspirated the marshmallows, went into respiratory arrest and suffered cerebral anoxia. He died after being removed from life support


• A resident with a documented history of swallowing inedible itesm was left unsupervised and died after swallowing several objects, including latex gloves

In 2008

• Several staff members terrorized a resident by threatening to cut off his genitals. The abuse was so pervasive they eventually did not have to verbally threaten the resident; they just held up two fingers and made a scissoring motion


• Staff members repeatedly used a wheelchair and seatbelt to restrain a resident who was able to walk as punishment or for their convenience. The resident attempted to escape the restraints and suffered injuries, including a fracture.


• A resident with a long history of swallowing inedible items was left unsupervised and swallowed 19 different objects, requiring surgery


• A resident was scalded and suffered second degree burns on his feet, hands and buttocks when a staff member bathed him in a tub with a malfuntioning water heater. The staff member did not touch the water before putting the resident in.

In 2009

• Staff members slapped a resident, forcibly removed his clothing and told him to perform oral sex on another resident


• A resident suffered multiple injuries, including a broken leg, after a staff member shook her and threq her to the ground


• Staff members failed to follow a resident's treatment plan, which called for him to wear specialized shoes. The resident suffered blood deprivation to his feet, was diagnosed with Ischemic Necrosis and was to have two toes amputated. While awaiting surgery, he was transferred to another state facility, where he choked on food, suffered cardiac arrest and died

In 2010

• A resident suffered second degree burns to her buttocks and lower back. Staff members did not notice the burns for approximately two hours. The resident was not sent to the hospital until the next day, despite having visibly blistered and sloughing skin


• A resident suffered first and second degree burns to her left arm, abdomen and thigh. Even though the resident's chart called for her to be bathed in a tub, the staff member used a shower spray, which supplied up to 167 degree water


• A resident was left unsupervised and fled his cottage through fire doors that had been left open. The resident was injured when his wheelchair overturned


• A resident was hospitalized for 10 days after staff members gave him the wrong medication


• A resident suffered at least 50 injuries over a four year period. None were reported to VOPA despite state law requiring reports of all such incidents.


• A staff member took residents' money and bought himself clothing and alcohol

In 2011

• A staff member, tasked to buy clothing and necessities for a resident, spent almost $500 of the resident's money to buy himself clothing and cologne


• A resident, who had standing orders to always be supervised due to a heart condition, was abondoned on a toilet in a locked unit for over an hour while staff and other residents went on a community outing


• Staff members placed a resident on a toilet chair that was not properly secured to the wall andm issing its lap bar. The resident fell and suffered a head injury


• Eleven residents were placed on a training center van for an alleged community outing. Instead, staff members left the van to conduct personal business, including buying lunch at a KFC restaurant. No food was provided to the residents on the van


• In an assult captured on video, a staff member hit an elderly resident so hard that he flew 6-8 feet across the room and crashed to the floor. Other staff members falsely stated that the resident had made sexual advances toward the assailant.

In 2012

• A training center had all of a resident's teeth extracted because it was more convenient than providing him with regular dental care and examinations


• A resident suffered internal bleeding, hernias, severe bruising and swelling in the groin, penis and scrotum after staff members lifted him by his support belt


• A resident suffered a head injury when she fell from her wheelchair after staff members did not properly attach her seat belt

Special Exposure Wednesday

Cooper is always so tired when he comes home from doggie daycare. All he needs is his blankie and naptime starts!

Standing Firm for What He Wants

I'd gotten spoiled the last few years. All my IEP meetings were at the same school with the same school staff, and everyone understood 'the rules.' But this year, Ronnie moved to a different school and the play book was tossed out the window.

Today I sat in an IEP meeting with an entirely new group of school staff. Obviously missing was someone from Central Office, and that would prove to be a problem - more on that later.

I received the draft copy of Ronnie's IEP late last Friday afternoon, and the meeting was scheduled for 1pm Monday. That is not enough time for me to digest what the school was offering. Several times, the teacher asked if I had time to review the proposed document, and every time the answer was no - I have a life and other children. I need time....

But the meeting was held, and from the very start, it took a turn for the worse. Remember those triennial scores from the tests not normed for a deaf students - those scores I had them put a disclaimer in Ronnie's file about - well lo and behold, those very same scores showed up in the Present Level of Performance section of the IEP. I suggested a rewrite and the rewrite was accepted. But why would the team think the scores would be acceptable in an IEP when I vehemently opposed them in the triennial report???

From there we moved to the goals and objectives. Ronnie's teacher, sweet and well-meaning as she may be, just doesn't know how to write a measurable objective. So all my suggested rewrites for those were also accepted. Along the way both the chair of special ed for the school and the teacher kept saying I needed to be a teacher. I reminded them that my expertise came as a result of many years and too many IEPs to count. Should have stood as a warning, don't you think???

Finally, we were at the placement discussion. Everyone except Ronnie and I assumed Ronnie would stay at his current school next year. I started on my speech about why that was not what either of us wanted. The school team's response started at shocked and then moved to being defensive and finally to telling me they couldn't make a change like that. Someone from Central Office would have to talk to me about that.

Well, if someone from Central Office had been at the meeting like they were supposed to be we could have settled the issue and perhaps had a signed IEP. As it stands now, there is no signed IEP and I don't know when there will be one.

Perhaps the saddest moment for the teacher and staff came when I suggested the interpreter ask Ronnie why he wanted to go back to his previous school. I didn't want them to think Ronnie was answering a certain way just to please me, and that's why I wanted the question to come from someone else. Ronnie said all his friends were at his previous school, that he hadn't made any friends at the current school, and he just wanted to go back. When further quizzed as to whether the staff at the current school could do anything to change his mind, he politely signed, 'no.'

That was a good example of self-advocacy in my opinion, but it was sad to see his current teacher get teary-eyed at the response. Ronnie is a very easy person to fall in love with, and I'm sure his teacher has. But both Ronnie and I know that he has to make decisions that are in his best interest. And today he did that.

I am very proud of him...

Favorite Things!

Ashley celebrated her birthday Saturday with some of her favorite things...

Shopping for plants for our garden...



Counting the big round lights at the store...



Eating Elmo cupcakes...



And smelling the beautiful flowers her brother, Chip, bought her...



And of course, a lot of shopping for new clothes!! All in all, a very good 17th birthday celebration!