Thursday, July 31, 2008

Help for Dreamcatchers

For those of you who might live close to the Tidewater, Virginia area, I urge you to consider attending this show and fundraiser. All the families and children in my Dreamcatcher's support group will be forever grateful!

The show is sponsored by the Partnership for People with Disabilties at Virginia Commonwealth University, Old Dominion University Theatre, the Guide by Your Side project, and the Pathways to Possibilities Conference.

Thankful Thursday

Today, I am thankful...

  • for my gutted bathroom, the noise and the dust, and the construction supplies all around the house - because it means that very soon I will have a fully accessible bathroom for Ashley!

  • for everything bagels - my current vice

  • that on my day off (?) from work yesterday, I only had to work 3 hours from home - better than 8 hours, right?

  • for the very handsome yearbook pictures taken of Chip who will be a senior in high school this coming school year. It's so hard to believe. If I close my eyes I can still feel the weight of his tiny baby body in my arms.

  • for a large glass of iced cold water when I return from my nightly walk around the neighborhood

  • that my van repair only cost $52 yesterday

  • for friends like Sharon and her mom, Janice. Janice was just diagnosed with breast cancer, and in her inimitable fashion, is already talking about the 'boob job' she will be having.

  • for "summer sandwiches" - tomato, cucumbers, lettuce, and cheese on toasted italian bread

    and the final two thankful things come Amy...

  • for Deborah's ooey gooey buttercream frosted brownies

  • air conditioning!

Tuesday, July 29, 2008

Feeding Frenzy

Both Corey and Jessica have some strange obsessions with food, and I don’t know how to help them. I had hoped that enough time in a stable, loving home would let both of them know that food is something they don’t have to worry about. But still it seems that they do.

Corey’s and Jessica’s obsessions are similar. They both seem very worried that we will run out of food. If there is food left in a serving dish at a meal, they will both keep asking for more. Before they start asking, however, they will ‘keep an eye’ on the food – frequently glancing at it – almost as if they are afraid someone will take it away.

Both will also go into the kitchen when no one else is around, and they will take food to their rooms. They seem to be trying to hide the fact that they took the food. I will find the remnants of what they take hidden in strange places in their rooms – usually because I have been alerted by a strange smell. And, if we go out to eat, Corey will always order the biggest item on the menu, and he is very quick to ask for an appetizer or dessert.

For years – 8 years for Jessica and almost 4 for Corey – there has always been a lot of food in the house. They are never denied food, and we always have healthy (and sometimes not so healthy) snacks available. I understand that the trauma of their early lives has probably instilled these food fears in them, but I would really like to be able to help them move past the fear. I just don’t have any ideas…

Music to My Ears

I wouldn’t call my family the most musical of families. The kids have had to endure my bad singing since they were very little. Otherwise they would have had no lullabies sung to them at all. And forget the ABC song and Itsy Bitsy Spider. So they learned to love my off-key presentations.

Because of my lack of musicality, I did try to encourage my children to explore theirs. When Chip was 5 years old, I signed him up for violin lessons. I had read that an early introduction to music would help a child academically. I still believe that, but I never could tell with Chip because after just a few short months and one recital, he was done with the violin. He then moved on to the guitar, but that lost out to an IPod. At least Chip appreciates music even if he doesn’t want to actively participate in a musical endeavor.

Jessica sings very well and is taking chorus in high school. Corey goes to a performance-based camp for two weeks each summer, so I guess there is still hope for the two of them to commit to a more musical life. Ashley, on the other hand, loves to bang on our piano or play her small accordion while the dog howls along, but the skill is sorely lacking.

Because of my failures to instill music-making in my children, I read with interest both a post on another site for which I write twice a week, 5 Minutes for Special Needs, and a link to a post that my friend, Jane, sent me.

The post at 5MFSN relates what a positive experience music has been in the life of the author’s daughter with autism. As the author writes, “Children with autism have been shown to respond remarkably well to music therapy, making it a great tool to use at home and in the classroom. Research shows that listening to music can help brain function. Music with a strong beat can stimulate your brain to try and keep up with it, helping boost concentration and alertness. By contrast, listening to music with slower tempos can help relax you. These benefits continue even after you stop listening. Music therapy can help with stress management (something I find particularly beneficial), pain management, and recovery from illness or injury.”

Soon after reading that post, Jane sent me a link to an organization in my area that is offering music training for children with special needs. Jane’s son has participated in the past, and loved it. The Da Capo Institute describes themselves as more than a music school. Rather, they consider that they are part of an emergent musical community. Their website contained a list of their guiding principles, designed after the first letters of their name:

  • Develop the whole person through opportunities for self-expression, discipline, creativity, and teamwork.

  • Achieve excellence through challenging experiences.

  • Create, build, and strengthen new and existing communities through the common language of music.

  • Appreciate all types of music.

  • Provide an opportunity for everyone, where all are valued as individuals.

  • Outfit individuals with the power to share music and impact their world

Another statement from their website, I believe, sums up the power of music in anyone’s life, but especially that of a child with special needs:

Music creates a backdrop of self-examination, determination, joy, and acceptance that fosters the positive development of a student with autism. Through music, we can be ourselves; there is no right or wrong! We can each achieve excellence at our own rate, given our own set of circumstances and be affirmed by a community.

Perhaps it’s time for me to re-examine my family’s musical experiences, or lack thereof. How about your family? Does music play an important role for you?

Monday, July 28, 2008

Simon Says

Dear Ashley,

I’ve grown accustomed to having my sleep interrupted by your nightly desire for a party. Why your party urgings strike at 3:00 a.m., I’ll never know. But until last night, I’ve never had my dreams interrupted by party fever, merely my sleep.

Last night, Simon Baker (who played the hotshot lawyer, Nick Fallin on the TV show The Guardian) and I were sitting on the front steps of my Boston row house – you know, the one we watched on HGTV yesterday as a million dollar renovation was completed. Just as Simon and I were deep into discussion about something going on at my neighbor’s row house, you started blinking the hall light on and off to get my attention. Damn, Simon was going to have to wait.

I quickly got out of bed, went to your room and put on my best mean mommy face (hard to do well at 3am), and told you to get back into bed. I then tried to quickly get back into my bed without waking completely so that I could hopefully summon Simon back for the continuation of my dream. Alas it was not to be. Simon had left and the only thing I could think about was that my alarm was going to go off in just an hour and a half.

So, my dear Ashley, if you see Simon in your dreams, please tell him to come back to mine. He and I still haven’t figured out what to do about my neighbor's 15 dogs, 2 potbelly pigs, and the parrot – especially the loud, screeching parrot.


Friday, July 25, 2008

Doing It Right

About a year ago, I posted a blog about Walgreens Drug Stores and their commitment to hiring people with disabilities. In that earlier blog, I wrote, “I do have to wonder if Walgreens would be making such a strong effort were it not for the fact that the son of the senior vice president had autism. Would the company have been so progressive if no one at the top had a life touched by disability? When we move to the next level, when companies do something similar because it is the right thing to do and not just a response to a personal involvement, then real progress will have been made.”.

I attended a training session earlier this week, the subject of which was making the workplace accessible for people with many different kinds of disabilities. During the training session, Walgreens was presented as a company that was ‘doing the right thing.’ Specific examples were cited and interviews with Walgreen’s employees were presented as evidence.

Now I’m convinced that Walgreens’ efforts are sincere and not just a response to the experiences of one senior vice president. After hearing the interviews of employees, I sense a real commitment throughout the entire organization. It’s amazing to witness the cultural change in the organization, and the words I heard were more than just words – they are solid beliefs in the ability of every person to contribute to the whole.

I’m including the original link I shared on the Walgreen’s story. Please take a few moments to view the two video clips included with the story. If today is a day that you need reaffirmation that there is still ‘good’ in this society of ours, you will find it in this story.

Thursday, July 24, 2008

Thankful Thursday

Today I am thankful...

  • that Amy (pictured to the right) is back from vacation!

  • that the peppers and tomatoes in my garden are almost ready to pick

  • that Amy is back from vacation!

  • for old friends who call out of the blue and brighten a blah day

  • that Amy is back from vacation!

  • for the new blogging friends I have met through my writing at 5 Minutes For Special Needs

  • that Amy is back from vacation!

  • for the rare cool summer night when I can open my bedroom windows and smell the honeysuckle

  • that Amy is back from vacation!

  • that demolition starts this coming Monday for my bathroom remodel

Oh, and did I say I was thankful that Amy is back from vacation???? We are all, and especially Ashley, very very happy now!

Wednesday, July 23, 2008

Nice While It Lasted

Sunday night - 5 hours of sleep - the most in a long, long time.

Monday night - 6 hours of sleep - I was ecstatic and felt good enough to run a marathon (almost).

Tuesday night - 1.5 hours of sleep - oh well, it was nice while it lasted...

Tuesday, July 22, 2008

I'm Not Ready

I looked at the calendar today, really looked at it, and realized that the summer break from school is already half way over. How did we get here so quickly?

I’m not ready to start thinking of school supply lists, school fees, new clothes and shoes.

I’m not ready to fill out the pages and pages of forms on which no information has changed from last year. Why can’t the information be transferred year after year, letting parents verify instead of getting writer’s cramp?

I’m not ready to start training another teacher for Ashley – trying to make that person understand that deafblindness is a unique disability that is not the same as being only blind or only deaf.

I’m not ready to insist that Jessica’s teachers have high expectations for her and teach her math and reading rather than cooking and shopping.

I’m not ready to start the homework struggles with Corey, and holding my breath each time his report card is due to come home.

I’m not ready to deal with late buses, nurses who overreact and school administrators who have lost sight of why they chose the education field.

Five weeks left, and I refuse to think about these things for at least the next three weeks.

The Best Care

In just a few weeks, our statewide family support group, of which I am the president, will be holding its annual family retreat. This year we will be at the beach, and that always brings about double the attendees as usual. Our support group, which is funded completely by grants, is able to pay the full cost of the retreat, including hotel rooms and all meals for the families. In addition, we provide childcare services for the families while the parents are attending educational seminars.

The children for whom we provide childcare have significant disabilities. In addition to having deafblindness, most have other physical or intellectual disabilities. This year we have a lot of babies and young children signed up for childcare. Our wonderful childcare supervisor spends the 6 months before the retreat recruiting and training childcare workers as well as planning activities, room layouts, crafts, and an overall theme. It’s a huge job and our organization is very blessed to have someone so talented and committed, because the pay is minimal!

So where is all this leading? I would like your opinions. If you, as a parent of a child with significant disabilities, were to leave your child in the care of someone else – and that someone else was essentially a stranger to you – what would be your concerns? What questions would you have? What answers would you be expecting to make you feel comfortable leaving your child? What qualifications would you expect the childcare workers to have? What would be your top three most important things to you? Would YOU be comfortable leaving your child?

Monday, July 21, 2008

Looking For Love In All The Wrong Places

Corey. Corey. Corey. My 15 year old son longs for love of the teenage girl type and just can’t find it. All last school year, he kept talking about his ‘girlfriend’. He would call her every night, but would only stay on the phone for a few minutes – not at all what I remembered from my teenage years. I also thought it strange that she never called him, and that they never made plans to go anywhere or do something together. I never intercepted any steamy notes written between the two of them, and never saw a picture of her in his room or wallet. Although the girl is real, I’m beginning to think the ‘girlfriend’ was not.

Corey, because of his very tumultuous childhood, does not seem to be on the same emotional or maturity level of his peers. He is usually drawn to younger children, perhaps needing to catch up and learn the ways of childhood interaction now that his home life is more stable. But at the same time, I believe he desperately longs to be more like his same-age peers, and his ticket to that club is, at least in his mind, a girlfriend. I think that the ‘girlfriend’ was someone who was nice to him, and in Corey’s lonely world, that became a bigger thing.

Now that summer has arrived, the ‘girlfriend’ has departed, and Corey is not handling that fact well. Although he and I have had several conversations on the subject, he seems reluctant to let go of his imagined connection and move on to either the real thing or another imagined connection. This, the first ‘girlfriend’, I believe represents more than just teenage like and lust, and should Corey be forced to admit that his ticket to the club was a fake, in his mind he stands to lose a lot more than just female companionship.

How can I help Corey through this difficult growth period? What can I say to convince him that there will be more girls in the future, and that sometimes belonging to the peer’s club may not be all he imagines it to be?

Friday, July 18, 2008

Inappropriate, Often Dangerous Practices

Last September, I wrote a post titled Takedown or Hug, in which I discussed the use of physical restraints by school personnel. I believed then and I believe now that restraints should not be necessary and not used. I understand the rationale I hear from school staff that they are only restraining to protect the child in the middle of a meltdown as well as the other children in the classroom or school. However, my belief is that were proper supports in place prior to the meltdown, perhaps the meltdown would not have happened at all. I am not in a classroom and I do not a group of 20 or more students, some of whom may have disabilities which may result in outbursts of anger and aggression. But, I am the parent of such a child, and I have learned over the nine years that I have parented her that there are other, better ways to diffuse a situation.

An article appeared in this week’s New York Times titled, Calm Down or Else. The author of the article describes several situations in a school classroom in which physical restraints were used. While on the surface, some of the restraints may have seemed appropriate, others described were obviously mishandled situations. The author poses the question “Have the incidents of restraint being used increased because more and more children with disabilities are being mainstreamed?” Again that supposition screams out to me that the proper supports are not in place. Asking a general education teacher who has not been trained in special education services to anticipate issues encountered by a child with an emotional disability is not going to work. Train that general education teacher – provide appropriate special education support in the general education classroom – teach everyone to notice the triggers that may set a meltdown in motion – in other words, know your students, anticipate their needs, and always be aware of the nuances of behavior occurring in the classroom.

The author ends his article with the concerns that unless schools adopt policies and standards, and unless those things are clearly communicated to parents and school staff, abuses and even deaths from improperly applied restraints will continue. And, as one of the experts cited in the article says, some parents want their child restrained and some are vehemently opposed, further complicating the jobs of those professionals who are caught in the middle of the fray.

I believe it is time for a national look at this issue, and while that is happening, I believe school systems need to adopt some transitional policies and standards to ensure the safety and RESPECT of each and every student in their classrooms. And just for the record, I DO NOT WANT ANY OF MY CHILDREN RESTRAINED.

**Special Note**
One exception to my stand on never restraining a child in a school is that situation where a child has brought a weapon to school. At least in my school district, all schools have a resource (police) officer assigned to the school. That officer is trained to handle weapon related situations, regardless of the age of the offender and should be the first to respond. However, if the situation is such that a teacher must act to protect others from the actions of a student with a weapon, I certainly pray that teacher has been trained and is capable of subduing the child with the weapon.

Thursday, July 17, 2008

Thankful Thursday

Today I am thankful...

  • that Amy's vacation is almost over and she will be back 'home' with us. We have missed you, Amy, more than you can imagine!

  • that I have the day off tomorrow. I need a break from my incredibly busy and insane office and Ashley needs a break from her substitute aide.

  • that Big Brother is back on TV for the summer

  • that my bathroom renovation is soon to start. Last night I met the contractor to make choices about EVERYTHING. I am so intimidated by that process that when the contractor said his wife would love to help, I readily agreed.

  • for fortune cookies. I like Chinese food but the real reason I order it is to get the fortune cookies.

  • that we have had a good amount of rain recently and my lawn is back to a beautiful shade of green.

  • that I overslept 30 minutes this morning. I know that doesn't sound like something to be thankful for, but when you need sleep as badly as I do, 30 minutes was like a beautifully wrapped gift

  • that with the hot weather, I can go barefoot a lot. I love shoes, in fact, I like them too much sometimes when I am shopping, but nothing beats walking in soft grass barefooted.

  • for Key Lime pie. Strawberry Street Cafe in Richmond, Virginia has the best I have ever tasted - and that includes the ones I had in Miami.

  • for the musical piece, Pachelbel's Canon in D major. No matter how stressful a situation I am in, it always calms me. Click below to listen for yourself.

Wednesday, July 16, 2008

Help Yourself

My daughter, Jessica, will be 18 years old this year. This fact snuck up on me and kicked me squarely in the gut. She will no longer be a child, but rather a young adult. Where I once worried exclusively about her health, her education, and her ability to interact with other children, I now must add finding a job, deciding where to live, and most importantly, how to advocate for herself to my list of worries. As I lay awake last night listening to Ashley struggling to feel better and sleep herself, I began to wonder how I can make the transition from being Jessica’s primary advocate to helping her become her own advocate.

In the not too distant future, I want Jessica to be able to make some decisions for herself – decisions I have traditionally made for her. For example, Jessica should be able to make some decisions about her medical care. She should know that she is able to change doctors if she is uncomfortable around one, or find a doctor that is more convenient for her schedule. She should be able to tell another person to back off, leave her alone, or mind their own business. She should be able to speak up for what she likes, what she doesn’t like, what she wants, and what she doesn’t want. She should be able to make choices about her clothes, her hair, and the type of music she enjoys. She should be able to decide how she wants to spend her leisure time or what she wants to eat for dinner. I would really like for her to be able to speak to lawmakers or other agents of change, letting them clearly know how she feels on issues that affect her. I want her to be happy and comfortable in her own skin, and confident to express her opinions. But, I just don’t know how to help her reach that place of advocacy.

I have found a program that is sponsored by the Virginia Board for People with Disabilities. It is called the Youth Leadership Forum, and the following information is from their website:

The YLF-VA program seeks to empower young people with disabilities to further develop their leadership skills. Students, serving as Delegates from communities throughout Virginia, participate in a wide range of activities and learning experiences during the four day Youth Leadership Forum set on a university campus.

The YLF curriculum includes training and development of individual career and life-goals, leadership skills, social skills, and self-esteem. Delegates benefit from sharing the experience of an energetic and socially enriched environment with other delegates, distinguished guests, mentors, and highly motivated volunteer staff.

Program Components:

• Small Working Groups to explore and develop self-awareness profiles, personal leadership goals, career and academic plans.
• Diverse Activities including educational, social, artistic, athletic and recreational events that demonstrate to young people the joy of leading a well-rounded life.
• Guest Speakers and Faculty that address issues such as disability rights laws, innovations in technology, use of assistive technology, employment opportunities, community volunteerism, advocacy and legislative opportunities in the Commonwealth.
• Interaction with Guest speakers and staff-people with disabilities from the private and public sector who have successful careers and/or businesses and who have maximized their talents and serve as role models.
• Field trip to the State Capitol that provides an opportunity to interact with high-level elected officials in Virginia's state government.

Eligible candidates include rising high school juniors and seniors from Virginia who have a disability, are highly motivated, and have demonstrated leadership potential.

Student Delegates are recruited statewide through a competitive application and interview process. Application requirements include written references and in-person interviews. Recruitment strategies incorporate criteria into the student selection process that, while being competitive, enable students to attend the Forum who might otherwise not have the opportunity for leadership development and who demonstrate potential and desire to become future leaders. Recruitment and selection strategies include procedures and outreach that demonstrate full commitment to including students with developmental disabilities as well as other disabilities.

This sounds like something that might help Jessica achieve some self-advocacy skills, and I plan to contact the other members of Jessica’s support team to see what they think. For my readers who have followed my posts about Jessica for some time, what do you think? Have you ever known a young person who has attended this forum or something similar? Do you have other ideas on how to foster self-advocacy?

Tuesday, July 15, 2008

Our Children Are Being Left Behind

An interesting article appeared in the Sunday paper in Virginia Beach this past weekend. The article, titled Loopholes Give Schools a Pass Even When Scores Fall Short, relates how if ALL student scores on standardized testing were examined - even the scores of special education students - not so many schools would have the passing grades they now enjoy. Loopholes in the way test scores are reported give very skewed results. Although this article focused on Virginia's administration and reporting of testing scores, I'll guarantee the same things are going on in a whole lot of other states.

The article, though very detailed and confusing in points, does an excellent job (in my opinion) of highlighting the issue of not including the scores of special education students. I believe it would be well worth your reading time, and then I suggest you find out what is going on in your state. It could be a real eye-opener.

And then if you still want to torture your mind, read the comments left by the newspaper readers.

Monday, July 14, 2008


What a weekend! There were several good things that happened, and several not-so-good things. Let’s see how the weekend balanced out…


Friday afternoon, one of the circuits in my home’s circuit panel went on the fritz. Every outlet on my kitchen walls, including the one into which the refrigerator is plugged, ran out of E-juice. My home warranty company said it wasn’t an emergency, and therefore it would be 24-48 hours (starting this morning) before an electrician could visit. They did inform me that I was welcome to call my own electrician and pay the weekend rates if I wanted.


Amy agreed to store my fridge contents in her refrigerator, especially important because I have medicine that must stay cold.

Saturday morning, I went to the hardware store and bought a heavy duty extension cord – and before you ask, yes, we did have one – one that my son told me on Friday no longer worked – who knew a weedeater would cut straight through an extension cord. I plugged my refrigerator into the new cord, ran it out my kitchen window and plugged it into my outdoor socket. My house is so old that I don’t have three prong outlets except in my kitchen and outside.

The food was returned from Amy’s fridge and life was once again good.


Ashley visited the doctor’s office Friday afternoon and Sunday morning.


Friday’s visit was to discuss possible treatment for reflux, not an uncommon thing for children with G-tubes. The pediatrician prescribed Zantac and told us to go visit the gastroenterologist. The Zantac seems to be helping.

Sunday’s visit was because Ashley’s cold/allergies which had been plaguing her for a couple of weeks took a turn for the worse. She didn’t sleep much at all Saturday night because of coughing, and when she woke up Sunday morning, she had a fever of 101. Fevers trigger her seizures and by 7am, she had already had two.

Antibiotics were prescribed and by this morning, Ashley seemed to be feeling a tad bit better, and she has had no more seizures.

We picked Corey up from the two week camp he had been attending, and had to leave the windows open in the van on the trip home due to the camp ‘aroma’.


All his dirty clothes and bedding were washed by early afternoon and put away.


Sunday, I made three apple pies (with my state fair award winning recipe) – two for a party at work, and one for us at home. Yummy!!

Okay - the GOODs win out this weekend!

Friday, July 11, 2008

Join Me For A Stroll

I’ve strolled a little off my usual blogland path this week and discovered some great new blogs (well, new to me). I thought I would share!

Dave Lupton, who goes by the alter ego name of Crippen, is a cartoonist from the UK. His work is simple and to the point, and although some of the humor didn’t travel well from the UK to my brain, most of the issues he addresses are very near and dear to my heart. Shown belos is one of his cartoons I really liked.

Dave describes the cartoon as "This cartoon shows a young white man displaying signs of cerebral palsy and sitting in a wheelchair. He is pointing at a large piece of cardboard on the floor with one of his feet and is grinning. The board is split into four equal squares and each square has a word in it. The word he is pointing to is 'Bollocks'. The other squares have such words as 'Crap', 'Up yours' and 'F*ck off' printed on them. On the wall behind him is a large white board on which is written 'Care Plan - let care team manage all money, make all decisions, sit around all day watching TV etc.'. A very anxious looking man with care team printed on his t-shirt is looking down at the word board and is thinking: Not sure it was a good idea giving him this new word board!"

After laughing with Dave, I stopped by to visit Terri at Barriers, Bridges and Books. A Partners In Policymaking graduate and a committed advocate, her blog just screams her passionate embrace of disability advocacy and cultural change.

Another one of my favorite blogs is A Stellar Life, written by Diane Standiford. Diane stops by to visit and comment on my blog, and I now find myself reading hers every day. Like my dear friend, Lynnette, Diane has MS and reading what Diane shares on that subject has helped me understand the struggles Lynnette faces on a regular basis. But even more important than that, I adore Diane’s celebration of diversity and her analysis of many current events.

And finally, I enjoyed my visit this week to the I’m Not Wrong blog. Katrin says it all in her title tagline, “I’m tired of being told who I should be by those who are not Me.” Hear, hear!!!

Thursday, July 10, 2008

Thankful Thursday

Today I am thankful…

  • For the great long weekend I shared with my brother and beautiful niece, Melody.

  • That I finally learned how to do a passable job of styling Ashley’s curly, wavy hair. Thanks for the lessons, Miss Amy!

  • For the quiet day at the office today. Lots of folks are on vacation and that means I can finally get some work done.

  • For Einstein sun-dried tomato bagels with low fat veggie schmear – yum!

  • That I have little baby cucumbers – lots and lots of them – in my vegetable garden. And my parsley is growing like a weed. I can already taste the marinated cucumber salad I am going to make!

  • That I have now seen bright yellow Goldfinches in my yard 5 days in a row.

  • That I actually convinced Chip to put on a tux jacket, pleated shirt, and bow tie for his senior class picture. He’s so handsome!

  • That today is the launch of a new website for which I will be writing twice a week. The new site is 5 Minutes for Special Needs. The team of 10 writers has a ton of great information and insight to share. Check it out today beginning at noon. My articles will appear each Sunday and Wednesday.

  • That Corey will be coming home from his two week camp this Saturday. I’ve missed his very annoying but also charming personality.

  • That Miss Wheelchair Virginia has agreed to an interview for this blog. Look for the entry soon!

Wednesday, July 9, 2008

Nice and Easy Needed

Ugh – teenagers. One would think that by now I would be ‘well-seasoned’ when it came to dealing with all the issues that surface during the teenage years. Ashley is my youngest teen. She has two brothers and a sister who have been teenagers for quite a while. But no matter, she is doing a fine job of increasing the number of grey hairs on my head. Funny thing is, the qualities I so desperately want her to have as an adult are the qualities that are currently driving me bonkers.

I want Ashley to be strong-willed and opinionated. Those two qualities will serve her well when she is an adult and other people want to have pity on her for her disabilities or have very low expectations of her. I want her to speak up for herself, and not back down when she believes strongly in something. I want her to be able to say “no” or “back off” or “leave me alone”. I want her to have goals for herself, and then do whatever she can to accomplish those goals. I want her to seek out the things she enjoys in life and let nothing stand in her way of obtaining those things. I want her to express her feelings, be they good or not-so-good feelings. But gosh darn it, does she need to be practicing each and every one of those skills right now, and with such a vengence?

You wear me out, my dear child, and the thought that the best (worst?) is yet to come scares me to death!

Tuesday, July 8, 2008

Take Good Care Of My Baby

In the words of Bobby Vee:

Take good care of my baby
Please don't ever make her blue
Just tell her that you love her
Make sure that your thinking of her
In everything that you say and do

Take good care of my baby
Now don't you ever make her cry
Just let your love surround her
Paint rainbows all around her
Don't let her see a clouded sky

My oldest daughter, Jessica, will be 18 years old this year. It’s so difficult for me to reconcile that fact with the miniature child I brought home nine years ago, the child who had been moved from foster home to foster home, had survived brain cancer and its treatment, and had endured physical and sexual abuses that would leave her scarred for life. She is now a relatively happy, vibrant young woman who still has her moments of aggression related to her diagnosis of Reactive Attachment Disorder, but who overall is enjoying life and brightening the lives of those around her.

I wish Social Services could see her now. I’m not sure they would even recognize her. She is quite self sufficient in many of the tasks she will need for semi-independent living – cooking, cleaning, activities of daily living – and she envisions her future as a nurse’s aide. But during a meeting yesterday with the support team that met last year for a person centered planning exercise for Jessica I was forced to face an issue that I admittedly had been avoiding – Jessica has a boyfriend.

Like I said, she is almost 18 years old, and rightly so, she has an intense interest in the opposite sex. Her support team and I have worked diligently to help her understand the ins and outs of relationships, and have worked to help her understand the sexual side of things, her ability to say ‘yes’ as well as ‘no’, and concerns for her health and safety. But still, I’m not ready.

I honestly don’t believe that my angst would be any different were Jessica not significantly intellectually disabled. She is my first girl child confronting these issues. It’s hard for me to see myself as the mother of a young adult. I’m used to my children being just that – children. But now, I must get used to the fact that they are soon to be adults. I worry about her vulnerability – I worry about her heart getting broken – I worry that she will get taken advantage of – I just worry. But like I wrote on July 4th, I want all my children to have the freedom of choice, and one of those choices is to engage in a loving, sexual relationship.

I guess it’s almost time for me to accept what I say I believe, eh?

Monday, July 7, 2008

Record Setting

It’s 9am and we are home from the hospital. We set a new record today!

Ashley was scheduled to have a cholesteotoma tumor removed from between each ear and her brain. She gets these tumors frequently, and the ear specialist must go in and remove them. Otherwise, she will have almost constant ear infections. She’s had surgery at least 6 times in the last 3 years.

The first time the doctor attempted the surgery, I don’t think he was prepared for the fact that the inside of Ashley’s ears are not structured quite like most people’s ears. He came out of surgery to let me know that he was working on the tumors but that things were going slower than he expected. I got very worried, primarily because he had sweat dripping from his brow and he seemed a little flustered. But the surgery went well that time, and has gotten better for each subsequent surgery. Ashley has once again provided invaluable learning experiences for one of her doctors!

Today’s surgery began at approximately 7:30. Thirty minutes later, Ashley had general anesthesia, had both her ears cleaned out, and was in the recovery room. Thirty minutes after that, she had woken up and Amy and I were helping her to her wheelchair. By 9am, we were home and Ashley was asking for food – lots of food.

Great job, Dr. Lim, and great job, Ashley! You are both real troopers!

Friday, July 4, 2008

Freedom Hopes

This Fourth of July I’ve been thinking a lot about the word ‘freedom’ as it pertains to my children with significant disabilities. It’s not flags and fireworks I’m thinking about, but rather the freedom of choice. I want my children to be able to make choices, to live life their own way. I want them to have the freedom to…

• Choose where they want to live and how they want to live
• Choose the type of job they want
• Make choices about the type of social life they want
• Choose their friends, fall in love, enjoy a sexual relationship, and know the comfort and joy of sharing life with the person of their choice
• Speak their minds, have opinions, and have those opinions respected
• Vote
• And the list could go on and on….

In other words, I want them to have all the rights and freedoms that people without disabilities have.

What does freedom mean for your children?

Thursday, July 3, 2008

Thankful Thursday

Today I am thankful...

  • That I have a long weekend from work this week. Happy Fourth of July!!

  • That Corey is enjoying his two week missions camp, and that his grandparents generously provided the funding for it.

  • That my “Jessica” flowers are bursting into bloom.

  • For a tall glass of iced tea on a hot summer’s evening

  • For the kind gentleman who slowed down so I could move to the left turn lane this morning.

  • For sweet, ripe, ice-cold cantaloupe

  • That I can pick up the phone any time and call my friend, Lynnette. She keeps me sane!

  • For meetings at work that end before the time they were scheduled to end

  • For the extra 15 minutes of sleep I got this morning

  • For Dr. Lim, Ashley’s Ear/Nose/Throat specialist. On Monday, he will surgically remove two tumors that are growing between Ashley’s ears and her brain. He’s had to do it before, and he does a wonderful job.

Wednesday, July 2, 2008

SHE Said

SHE said that her 18 year old daughter was 'retarded'.

SHE said that her daughter had just gotten a job as a shoe sorter, but SHE was worried that her daughter would steal the shoes.

SHE said that the family, minus the 'retarded' daughter, went out to dinner and her birth son said that they should never have adopted the daughter.

SHE asked if the group knew of a doctor who would sterilize her daughter.

SHE said her daughter was ruining her life.

SHE said if SHE knew then what SHE knows now, SHE would never have adopted her daughter.

SHE said all this during a meeting of an adoption support group meeting.

At the same meeting were new adoptive parents, parents still trying to find their way through the challenges faced with adopting older children. I thought it very insensitive that SHE didn't moderate her comments a little more. I was really uncomfortable during the entire meeting. I need to find a way to process all this and make a decision about my further participation in this group.

Tuesday, July 1, 2008

Mr. Sandman, Bring Me A Dream

In March, 2007, I wrote a post titled A Three Toothbrush Night. In that post, I explained how my nights, and the amount of sleep I get, are measured by the number of battery powered toothbrushes Ashley has. As I explained in that March post, Ashley uses the toothbrushes for sensory input - input that helps her relax. Unfortunately many nights she has a hard time relaxing, even with the toothbrushes.

Since I adopted Ashley eleven and a half years ago, I haven't slept through an entire night. Many times that was due to worrying about her health and well-being or dealing with seizures, tube feedings, or other significant medical problems. But, even during nights when I am not awake with worry, I am awake because Ashley just doesn't sleep well. I've never known for sure if those poor sleep habits are due to her deafblindness or perhaps small, almost undetectable seizures, or something I just haven't figured out yet, but I do know that the lack of sleep is really taking its toll on me.

I have a very high-stress job - I am a single parent caring for four children, three of whom have disabilities - and I have fairly significant health problems myself. All those things mean that I REALLY need my sleep. I just don't know how to get it.

I've tried, with doctor supervision, giving Ashley Melatonin. It didn't help. She is currently on Clonidine, which helps her get to sleep but not stay asleep. Benedryl helps some, but like the Clonidine, does not last through the night, and can have other negative effects such as causing ear infections. She doesn't take naps, and I try to keep her busy and active during the day so she will be tired at night. And she is tired and goes to sleep easily at bedtime - but will only stay asleep for four or five hours.

Does anyone have any suggestions for me? Have you had similar problems and solved them? I'm desperately in need of a date with the sandman...