Happy Friday

I'm sorry for everything in my life I have ever complained about. This young man is an inspiration for me to be a better person and a better parent. Enjoy...

She and I

Seventeen years ago today a baby was born weighing just under two pounds. She entered the world just as she has lived her life – kicking, screaming, fighting, and determined to have her way. She endured liver biopsies, brain surgeries, eye and ear surgeries, monitors and enough medicines to fill several gallon sized containers. Then at age two, she found her way to me, the mother she was always meant to have.

We’ve struggled, she and I…so many medical issues about which I knew nothing…the closest brush with death that I hope never to experience again…the school battles and lawsuits…the insurance battles and lawsuits…and the general growing up in a crazy world issues (OMG, the teenage years….). But through it all our hearts have grown virtual connective tissue. We are of one heart now, she and I, one heart that must have its two parts intact to survive.

Her smiles as she opens her eyes and turns her face to me each morning turn the world into Technicolor. The touch of her hand on my face when she wants to make sure I understand what she is trying to tell me imparts a peaceful understanding and acceptance that everything is right and good. And when I look into her eyes, I see the wisdom, the truth, and the love that God has imprinted on her soul.

She is my beautiful daughter, one of the strongest loves of my life, the child I dreamed of when I was a child. I cannot imagine not having her in my life or my not being in hers. God willing, we will have many more years together, and when God decides that it is my time to leave this world, I sincerely hope she is just one breath away from joining me.

Happy birthday, my dear Ashley. Love, mama.

Special Exposure Wednesday

My tulips!!! (Thanks to my son, Chip, for the magnificent photos!)

Purple Day

Yesterday was Purple Day. Purple is perhaps the color I despise most. I don't know why, but whenever I have tried to wear something purple or to use purple in my home decorating, I feel like I have a constant creepy crawly itch all over, sort of like just realizing you have sat next to a tree full of chiggers.

But still I celebrated Purple Day yesterday.

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. This year, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!

So while I couldn't bring myself to actually wear purple (remember those chiggers), I did celebrate by holding my sweet Ashley just a little tighter and a little longer!

Ashley has had seizures all her life. When I first adopted her, she was having 2-3 a day. When she was just three years old, she had a status seizure and the only thing that kept her alive was life support for three weeks. Her doctors and I have been through many medications trying to get her seizures under control, but have never been completely successful. But things have definitely gotten better.

About the time Ashley hit puberty, her seizures changed a bit. Instead of grand mal type seizures, she changed to complex partial seizures. But the number of seizures went up to 6-8 a day. That was where she stayed for several years as we experimented with different medications, all of which had a lot of undesirable side effects. Also about this time, we discovered that she has three brain tumors. The doctors feel they are benign tumors and that they are not the source of her seizures. So, I have made the decision not to put her through brain surgery at this time.

Then as Ashley emerged from the puberty storm, her seizures changed yet again. While they are still complex partial seizures, they are shorter in duration and fewer and farther between. Now she may only have 2-3 a week. And, she can now tell when one is about to happen and can get herself into a safe position to avoid injury.

So all in all, things are much better. I hope that one day she will have no seizures, but at least things are manageable right now. Seizures will mean she would never be able to get a driver's license - well that and the fact that she is blind - but there is little else that she can't do.

So in honor of Purple Day, I resisted the urge to scratch and donned something purple. Purple Day or not Purple Day, she is one of the most important people in my life and I would do anything for her - even wear purple!

Here We Go Again

When Ashley was in elementary and middle school, I constantly had to prove her abilities. She was viewed as a child with many deficits rather than a child who learned differently. Because she didn't fit the mold of a typical student, she was labeled as significantly delayed, when actually the teachers and staff had just refused to acknowledge that her sensory disabilities meant she approached the world in a different way. Fortunately by the time she moved to high school, her teacher 'got it', and Ashley has and continues to flourish.

But now I am facing the same battles with Ronnie's new school and teachers.

As parents of children who receive special education services you know that once every three years a child has to be re-evaluated. It's called a triennial, and it has always baffled me as to why we must go through all the testing over and over when the disabilities remain the same. Ronnie is still just as deaf as he was three years ago. He still communicates in his mother tongue, ASL. And he has not miraculously tossed aside his wheelchair and begun to walk.

But that doesn't matter. The rules say the triennial must be done and done it is. And that's where my problems with Ronnie's current educational staff emerge.

One component that was administered was a speech and language evaluation. I get the language part if, and that's a big if, the evaluation is administered in ASL by a Deaf person. It wasn't. But the school feels it is fine because they used an interpreter for Ronnie. I won't go into all the reasons why that is not a good approach, because even more distressing than that is the fact that they also administered the speech component. Ronnie doesn't speak - at all. Like a lot of Deaf people, he makes sounds, and in fact can be quite loud sometimes, but he is not speaking words. Again, ASL is his mother tongue.

But again, the school thinks all this is ok because they believe they have also measured his ASL skills - with a speech and language evaluation. Here are two examples why that was a disaster also:

Ronnie was shown a picture of tweezers and asked to sign what they were. He signed 'pickup - hair - ouch'. The speech therapist marked that as incorrect since he didn't know the word 'tweezer'. But what Ronnie signed is the sign for tweezer. If you want to see what I mean, go to the website www.aslpro.com, select main dictionary, and select the word tweezer.

The speech therapist also noted that a lot of Ronnie's signs were incorrect because they showed the action of the word, not the actual word. Again, go to aslpro.com and look up words such as wheelchair and basketball. Many, many ASL signs reflect the action of a noun, but the speech therapist didn't know that. I'm still baffled why the interpreter didn't enlighten the therapist.

So the result is that their evaluation puts Ronnie's language at the 3 year old level. And that is nothing short of preposterous.


Then to make things worse, the classroom teacher used the Kaufmann Test of Educational Achievement to measure Ronnie's educational level. Only there's one little problem. The Kaufmann has never been normed for students who are profoundly Deaf. So I head to the triennial meeting on Tuesday to again argue the point that unless a test has been normed for the student you are evaluating, all the results are invalid.

It reminds me of the time Ashley's teacher came away from Ashley's triennial with the statement, "Ashley is a visual and auditory learner.' ASHLEY IS DEAFBLIND!!!

Tuesday's meeting is probably going to be a little contentious because once again I am going to have to argue why standardized testing does not fit all students, especially students with sensory disabilities. I really thought we were past all that in my school district, but apparently not.

Elena Delle Donne

OK, get out your hankies. You're going to need them. I know this is a long video (11 minutes or so), but you NEED to watch it - REALLY!

Cameras Needed

The student is a 6th grader, and besides having autism, she had bruises on her arms and around her nose. Being non-verbal, the child couldn't tell anyone what happened to her, but that didn't matter - the school had cameras in the gym where the incident happened. And the incident happened because an instructional assistant assaulted the student.

Things like this just fuel my fears - fears over what happens to my child at school and on the bus - fears over what will happen when she is out of school, riding special transportation, and at a work site. These are the fears of my nightmares.

Although I am comfortable with Ashley's school environment now (she has the world's best teacher and we communicate daily), I do have major concerns about the bus transportation. And her school years in the past have been rough.

First there was the broken nose from falling up the school stairs when she was only 3 years old; then there was the split lip that required stitches that happened in the school hallway and 'nobody saw anything'; then there were the two broken front teeth that happened on the bus and "'we're so sorry, that camera wasn't working that day"; then the day she came home without her g-tube and "nothing happened here, we're sure of it" (until the next day when the g-tube was found on the playground); then the catscan that was needed because she tripped over a rug on top of carpet in the classroom and fractured her eye socket bone; then the cut to her head that required two staples caused by "Ashley did that to herself"; and then all the bruises to her arms and legs that look suspiciously like fingertips.

All schools need cameras in all classrooms and hallways and lunchrooms and offices and buses. Nothing short of that...

Special Exposure Wednesday

Spring abounds in my yard....

My sweet little peach tree is in bloom



As is my forsythia




And a whole bunch of these little periwinkle flowers




I love Spring - until the pollen shows up, that is.

Apps for Ashley

My gotta-have-the-latest-gadget son, Chip, got the new iPad 3 last week. While I am very happy for him, I am also thrilled (!) because it means Ashley gets his old one!! Yes, it is the first generation iPad, and yes it is a little slow and crashes sometimes, but still it is very exciting for her.

Ashley has been using an iPad at school for a year now, and loves it! The school staff was amazed at how quickly she picked up the techniques (finger swipe and such) as well as at the increased pace of her learning. Of course, I have been telling them since she was in 3rd grade that she needed a computer-based curriculum...

I've asked her teacher to let me know what apps Ashley uses at school so we can get the same ones for home. But, I am also interested in apps you may have found to be especially good for a child with special needs. Keep in mind that Ashley is severely visually impaired (blind in one eye, 20/2000 in the other) and severely hearing impaired (profound loss in one ear, severe in the other). She doesn't need any communication type apps, proloquo for example, because she indicated years ago that all she wants and needs for that are her hands for signing. She loves Tigger, SpongeBob and Elmo, and loves looking at people's (mostly children's) faces. She likes numbers and letters, and she likes movement, i.e. dancing letters and numbers. She's not a huge fan of coloring apps because she would rather create three dimensional artwork.

So, given all that, what are you recommendations for some iPad apps??!!

The Mutilation Continues

Back in 2007, I wrote about Ashley a young girl from Seattle who had decisions made for her that forever altered the course of her life. The pictures to the right, courtesy of The Guardian, show Ashley in 2007 and again in 2011.

A Tale of Two Ashleys

A Tale of Two Ashleys, Continued

A Year After the Mutilation

As I wrote back then, "She had no say in whether or not she wanted her uterus removed, her breast buds and milk glands removed and massive doses of hormones injected into her. She had no say as to whether she wanted to remain a child for the rest of her life or wanted to grow and mature like every other young girl. As her siblings grow, she will forever remain a young child. She will watch her parents grow old and will perhaps wonder why everyone around her changes but she does not. All of these decisions were made for her by her parents, parents who decided these things were in her best interest."

The debates were many and heated, and they live on today. They live on because parents are quietly also doing the same thing to their children. Both boys and girls. The parents hope no one finds out, but The Guardian in the UK did, and their articles are listed below. I urge you all to read them and express your opinions on this matter.

Rise of The Ashley Treatment Continues

Ashley Treatment on the Rise Amid Concerns from Disability Rights Groups

Signmark

I love ASL videos and found these while looking around for some new music. Signmark (that's his name) is a Deaf rapper.....Enjoy!

Amazing

Life support was removed from Corey's birthmother on Tuesday of this week, but apparently she didn't need it anyway. She is still alive!

I don't know how she went from no discernable brain activity last Friday to shaking her head up and down and side to side in response to yes/no questions.

Actually, it reminds me of my ex-husband. People who one would expect to not live very long given their addictive life styles seem to live much longer than anyone would ever have thought.

Corey seems to have relaxed a bit, but there are still no good expectations for his birthmother's future. But who knows, she's already surprised everyone....

I'm sure Corey would appreciate your continued prayers.

Let Me Share With You

Just because our children have different needs and abilities does not mean we don't like to talk and brag about them. We can't usually talk about the after school activities, the football games, the parties, the sleepovers, or the dances our children attend. We don't often talk about the shopping trips with our daughters or our trips to the movies or the local theme park. And, we don't often talk about the future - what colleges are children are applying for, the type of husband or wife we hope our child will choose, or the number of grandchildren we long for.

Rather, the subjects on which we can speak involve g-tubes and traches, therapy visits and doctor appointments, impacted bowels and catheter sizes, special needs trusts, school struggles and court cases.

In other words, we speak about things most people aren't interested in hearing.

It may make them uncomfortable. I know my co-worker doesn't want to hear why I have to scrub my bathroom three times a week. They may not know what to say or how to contribute to our stories. They may even think we complain too much or make too big a deal out of things.

With a few rare exceptions, they don't 'get it.' They can't imagine living the life we special needs parents live, and they can't imagine having a child for whom end-of-life planning happens before the child is 5 years old.

But it doesn't lessen our need to talk and share. What can I do to make these non-special-needs parents and caregivers be comfortable when hearing about my life and the life of my children?

Not Enough Seating

Here is a question for those of you who have a wheelchair user in your family. When you go to performances or plays or sports games, how is the handicapped seating handled?

My general impression from the venues we have visited is that a wheelchair user is allowed one companion seat. If our party includes more than just those two people, we have to get seats in some other section. For example, the last time we went to the circus at our city's coliseum, I got two handicapped seats for Ronnie and Ashley, two companion seats for me and Chip, and Corey had to go to another section.

I just really don't think groups of people should have to be separated like that just by virtue of some of the group being wheelchair users.

It's not like the handicapped seats are prime seats. From my family's visit to several different venues, the handicapped seating areas are about in the middle of all the seats. By using those seats, we are not taking special seats away from someone else, and usually we end up paying extra for the handicapped seating.

And just last week, I heard from a mom who was told that no one could sit with her child who was assigned a handicapped seat. No arrangements had been made for companion seating. This child was so excited to see the Lion King show from Broadway, but unfortunately couldn't stay due to the seating issues.

How have you handled this on your outings? Have you found that complaining to management makes a difference? Do you try to work things out in advance of the event, and still have problems when you arrive? If you have found a way around this type of rule, I would love to hear about it!

TGIF - Take 2

Heather shared this link in a comment yesterday, and I believe it is well worth sharing with all of you...

The Wolves, the pig and the retarded bunny

TGIF!

This little video says it all....

Tablecloth Manners

I've spent many years teaching my children table manners, and for the most part, they get it. We've had to make some adjustments for specific disabilities, but I can say that most of the time they chew with their mouths closed, they know the difference between a fork and a knife, and they've learned what a napkin is for.

I know that for some table manners may not seem like a big thing when you've got a child with significant disbilities. But it is something that is important to me, and I believe will be important to my children in the future.

This weekend, it was time to start stepping things up. I decided that since they had done a good job with the basics, we would start working on "tablecloth manners." So I bought a washable tablecloth and off we went.

In my mind, we would start to concentrate on how to get into one's chair without pulling the tablecloth off the table, how to use real glass glasses, how to pass food from left to right, how to tell the difference between a salad fork and a dinner fork, and what to do with one's napkin at the end of the meal. From there, we would work on more formal table settings and more polished manners.

Sounds good, right?

Well hopefully we will get there one day, but for starters, I washed my new tablecloth three times in two days! It's a good thing I don't make them dress up for dinner :)

Special Exposure Wednesday

PUPPY PLAYTIME!!

The Call - Continued

All the tests which have been done on Corey's birthmother indicate that all brain activity has stopped. There is no hope left. It is just a matter of timing at this point - when to remove life support.

Corey is not doing well. I'm hoping he can go to Baltimore tomorrow. He needs to say goodbye and to tell her he loves her one last time.

Their life together was tumultuous at best, but very horrible at its worst. Still she is the woman who gave birth to him, the woman that, despite the demons that plagued her, loved him. She couldn't parent him, but she couldn't ever forget him either.

They will be forever bound, and I want him to know that. He is the fine person he is today due in part to the life they shared. Please include Corey in your prayers tonight.

The Call

My son, Corey, got the call that probably wasn't a surprise, but it was still painful.

His birthmother, a woman that for most of her adult years has been a drug addict and an alcoholic, overdosed on Sunday. She is unresponsive and the doctors say there is significant brain damage. That's all we know right now.

Corey's Aunt headed to Baltimore, and depending on what his Aunt and the doctors suggest, Corey may also be headed there soon.

Although I know in my heart that Corey feels a stong bond with us, his adoptive family, the pain of possibly losing a birth parent is devastating. I want to make it better for him, want to take away the hurt, but I can't.

But Corey is strong and has grown into a fine man. He will make it through whatever happens. I have no doubts about that. But that small child that lives inside us all will always have a tough time when it comes to something this serious.

Please keep Corey and his birthmother in your prayers...

Friday Surfing and Tubing

During my weekly web surfing and YouTubing, I found the following three things of interest...

Ashley would LOVE one of these rooms!



This next video bills itself as the most inspirational video you will ever see. And that is so true!



And finally check out this link to a new reality show featuring women in wheelchairs...Cool!

TGIF, everyone!

Wanting a Bigger World

Life can be pretty isolating when one has a disability. And by extension, mine has become that way because I have children with disabilities. While many disabling conditions have their own 'groups', the Autism Society for example, I have yet to find a group made up of children with Spina Bifida who are also profoundly Deaf, or children who are deafblind, have seizure disorder, ADHD, and feeding problems. And if one doesn't fit in a "group", other than the group called disability, options for socialization are even further reduced.

In some ways it's not bad to be isolated. My children and I don't have to endure the stares, the looks of disgust, the stepping aside as if what my children have is catching, the 'awwws' of pity, or the ignorant comments and questions (I don't mind non-ignorant comments or questions). There's a warm comfort to be found within the walls of our home where we are all just people, family members, valuable human beings. But every so often, the isolation is stifling and I long for a bigger world than that to be found in our personal 2400 square feet.

Last night was one of those times. I wouldn't say I was depressed, but I was a little bit sad. I miss the impulsive moments of jumping in the car to head to the beach boardwalk or the night out to try out a unique new restaurant. Nothing can be impulsive and spur of the moment anymore. We have to know if a place is wheelchair accessible, if there is kid friendly food available, or if there are medical facilities close by. We even have to decide if we think the other patrons at our outing will be accepting of our differences.

Please don't infer that anything I have said means I regret my decisions to build my family with children who have significant disabilities. Because there is absolutely no regret, and in fact, I want more children with disabilities. I just wish the world was more accommodating, and that we could all be a part of the whole and not just savor our slice of the pie.

To quell my sadness last night, and to feel once again the magnitude of the world, I stepped out onto our deck. It was dark and the stars were out. The only sounds were the sounds of neighbors going about their evening routines, the birds settling in for the night, and the barks of family pets wanting their dinner. I closed my eyes and imagined I was standing on the shore, hearing the waves crash and feeling the salty wind touch my cheek. I took a little 'trip' to the beach and it was wonderful. My sadness lifted for the moment...