What Now?

So it's summer and your child with disabilities is too old for any camps (assuming you could find a camp that would accommodate their needs). What do you do?

As a single mother, I have to work full time. I am the sole provider for my family. I have aides for both Ronnie and Ashley, but the aides are not always comfortable taking them out into the community. And sometimes, to be honest, I'm not comfortable with the aides assuming that responsibility. So my children end up staying around the house all day, and rightfully so, getting very bored.

But even if I didn't have to work and could stay with Ashley and Ronnie all summer, what activities would we find to fill three months of days with no school? And getting a job is not likely since most of the non-disabled teenagers can't even find jobs.

Yes, there are museums and parks, libraries and movie theatres. But after the first month, some of those attractions grow stale. We can't travel all the time - the money for that just isn't there. We will take a week's vacation in August, but August is a long ways off.

So what do other parents do with their almost-adults with disabilities? How do you keep them interested and interesting; how do you help them maintain their skill levels; and most importantly, how do you help them continue to prepare for independence in the future?

The best I've been able to come up with so far is volunteer work. Ronnie is helping out with some office work at Sportable, the adaptive sports organization that runs his basketball and lacrosse teams. He is also learning to wash and maintain a lot of the sports equipment and wheelchairs. I haven't found any volunteer work for Ashley yet though.

If I can't come up with some ideas soon, it's going to be a very long summer, and I fear, a prelude to their lives after they leave school permanently.

Special Exposure Wednesday

I'm still having a very hard time convincing Ronnie he is capable of more - capable of independence - capable of achieving a life of normalcy despite being in a wheelchair. Talking to him about it doesn't seem to work, so I decided to have him do some things he probably had never thought of doing. Maybe if I can string enough of those things together, he will finally understand that he won't need someone to take care of him for the rest of his life.

This past weekend, he worked on sweeping off our basketball court and watering our plants. Sometimes he has to figure out new ways of doing things, but so far he always has.

He's got a ways to go to find that belief in himself, but I know he will get there!

The Don't-Care-Van

And I thought school transportation was bad.....

This past Saturday I hosted a get-together of professionals who are interested in advocating for people with disabilities, college graduate students, mentor families, and self-advocates. One of the self-advocates was a woman, Barbara, who appeared to be around 30 years old. She used a hi-tech power wheelchair and a communication board. She typed out what she wanted to say by touching a straw held in her mouth to the keyboard of the communication device. She moved her chair independently though slowly since she had only the slightest movement in one of her hands. She was funny and beautiful and had a wicked sense of humor.

She traveled to my house using a van service in our area called Care-Van. It is operated by our local bus transportation company, and its only purpose is to transport people with disabilities.

Over the years I have heard many nightmare stories about the unreliable service provided by Care-Van, and I had the chance to experience that first hand with Barbara. First, they had a tough time, so they said, finding my house to drop Barbara off. My house is probably one of the easiest houses to find in my city - truly. It is one turn off a main road, and it is easy to figure out which house in the neighborhood is mine because of the prominent wheelchair ramp. But Care-Van claimed they had a tough time finding it. I wonder if they have heard of GPS devices...

Care-Van finally did find my house, and Barbara joined in the fun. When she was dropped off, Barbara had already made arrangements to be picked up three hours later. Sounds simple, right? Apparently not.

Care-Van showed up - same driver - same wheelchair van. Barbara had already started down our ramp heading to the van when the driver appeared to tell her that he couldn't take her because his van was already full. He said he would be back in about an hour....

So Barbara had to work very hard to turn her chair around, get back in the house, and wait another hour. I personally enjoyed the extra time with Barbara, but I could tell she was anxious to get home. She explained that she had booked these travel arrangements well in advance, but that she wasn't surprised because this always happened. She couldn't begin to count the number of times she had been late for work because of Care-Van. And I have heard that from many others.

So, you've got someone, many someones, with disabilities who have a tough time finding employment in the first place, and then because a transportation company can't seem to understand scheduling and travel, the person is at risk of losing their job. And even worse than that to me is that someone like Barbara, who works very hard to have control over things in her life, things which are extremely difficult at best, and she is at the mercy of a transportation provider.

I'll say the same thing I've said about school transportation services - I know it must be a complicated task to schedule the transportation, BUT THIS IS THEIR JOB. It's what they are in business to do. And right now, they are doing a really crappy job....

Teacher

Chip is a business major (information systems) in college, and is doing very, very well at that. He is also a burgeoning photographer and is doing very, very well at that. He also loves to cook gourmet meals, and again, he is doing very, very well at that. But there is also something else that he is doing well with, and that is being a teacher for Ronnie this summer.

Chip has taught Ronnie to do his own laundry – from start to finish. When adaptations or modifications were needed for Ronnie to accomplish that, Chip figured it out and implemented them.

He is teaching Ronnie how to cook. So far Ronnie has made peanut butter fudge and the best baked beans ever.

He is teaching Ronnie how to clean up the kitchen. Ronnie loads dishes into the dishwasher, adds the soap, and know how to start it.

He is teaching Ronnie about money – about the exchange of money for goods and services, and how to make sure the right change is received. Chip’s next plan is to teach Ronnie how to save some of the money he earns as his allowance.

Chip has taught Ronnie how to clean his room and make his bed each morning. He has taught him how much easier it is to move around the room when the floor isn’t littered with objects, and how much easier it is to find things when they are put in their proper place.

In short, Chip is teaching Ronnie the skills he will need to live independently as an adult.

I know Chip likes information systems and photography and cooking, but I do have to wonder if he is missing his calling as a teacher and mentor for people with disabilities!

Walking and Wheelies

Ronnie is working so hard in physical therapy! He has set a goal for himself to be able to walk into court in October for his adoption finalization. He recently got his long-awaited orthotics, and although his therapist wants him fitted for orthotics for his upper legs and hips, he is already starting to practice his walking. And, he is doing great! He loves standing tall. He slipped up last night during therapy and said another reason he wants to walk is so he can dance!



Walking will be very hard work for him, so a wheelchair will still be a constant in his life. His therapist is also working on making him more comfortable in his chair. She is showing him how to get his chair up and down curbs when there is no curb cut. And she is teaching him how to control his chair more by letting him practice 'wheelies' in it.

He's still a little uncomfortable with the sensation of balancing on the wheels, but the therapist has assured him that it is like learning to ride a bike - once he gets the skill down, he will never forget it. Ronnie wants a sports chair so he can play basketball in a wheelchair league and that is one more reason the therapist wants him to learn more control of his chair.



I think he is really enjoying both the walking and the hotdogging in his chair. They are both one more step towards more independence for him, and that is something he longs to have.

The Color of Water

I love having a geek in the family! My son, Chip, is always finding things that I never knew I needed, but then realized I couldn't live without.

Today's find is something that will help Ashley know when the water from our faucets is either hot or cold. Even though I had already put red and blue electrical tape on the handles, she had a tough time seeing that with her significant visual impairment. I needed something else...

Chip came to the rescue by finding a faucet light with led heat sensitive color changing ability. We had seen similar products a year or so ago, but the cost was prohibitive. Chip found this one on Amazon and it only cost $10!!

Here are some pictures. The water appears red when the temperature reaches 85 degrees. Otherwise it appears blue. Needless to say, Ashley loves it!

A Single File Existence

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.

Today I am thankful for bold, quirky people. They make life so much more interesting.

And Then What?

Two different people asked me last week whether I intend for Ashley to stay in school until she reaches her 23rd birthday (which is allowed under IDEIA), or if I will let her graduate with her class. Since Ashley started high school this year, perhaps I really should have an answer to that question, but I don’t.

Those of you with young children with special needs probably haven’t given much thought to the age at which your child will leave school. I know I didn’t. That time just always seemed so far away, something I didn’t need to think about. But with Ashley in high school this year, should I have an answer??

My first thought is yes, Ashley will stay until her 23rd birthday because the more education she gets, the better. But then I tell myself that for the most part she isn’t getting an education in our school district. Her real education comes from homeschooling after school and on the weekends. So if that is the case, what’s the point of her staying in school. It’s not like she is going to get a standard diploma if she hangs around. In my state, she will get a ‘certificate’ of completion, and she can get that with four years of high school or with 7 years of high school.

Of course, whenever she leaves school, there must be a plan for the next years. Where will she work? Where will she live? How will she connect with people? Who will be her ‘community’? There is so much planning and so many supports to be put in place for the post-high school years, that it seems very overhelming.

I honestly don’t know how to approach this whole issue. If any of you have older children, and have faced this issue, I would love to hear what your decisions were and how you helped your older child move to the next phase of their life.

Today I am thankful for our pediatrician’s office which has office hours for sick children seven days a week.

Chill, Baby

If I hear one more time that the primary purpose of high school education for children with disabilities is to prepare them for work, I am going to scream. I wrote last week about Ashley not getting History or Science in high school because ‘she doesn’t have a history or science disability.” Her IEP draft was full of ‘vocational’ goals and objectives, and if the school district staff asked me yet again if I had ‘connected’ with vocational rehab agencies for Ashley, I might just have told them where they could stick their sheltered workshop job.

I understand that our children with disabilities may need a little more time to prepare for the workforce, but seven freakin’ years??? That seems a tad excessive to me. Heck, I can start listing the names of many non-disabled high school students who were not prepared for adulthood and the workforce when they left high school. And, are our children to have no other focus in their lives once they turn 14 years old? That’s pretty sad if that is what the school district believes.

Why shouldn’t our children with disabilities be entitled to the same work-life balance being promoted for those without disabilities? (Work-life balance can also be applied, imho, to education-life balance).

According to a survey conducted by the National Life Insurance Co., four out of ten employees state that their jobs are "very" or "extremely" stressful. Those in high stress jobs are three times more likely than others to suffer from stress-related medical conditions and are twice as likely to quit. The study states that women, in particular, report stress related to the conflict between work and family. Do you think our children with disabilities can also suffer from stress? Heck, their lives are often nothing but stress.

The number of stress-related disability claims by American employees has doubled according to the Employee Assistance Professionals Association in Arlington, Virginia. Seventy-five to ninety percent of physician visits are related to stress and, according to the American Institute of Stress, the cost to industry has been estimated at $200 billion-$300 billion a year. What do you think the costs will be if a person with a significant disability experiences stress and burnout?

Ashley loves art – and music – and plants – and shopping – and traveling – and reading – and math – and science. Restricting her enjoyment of those things during her remaining school career – approximately seven years – will not a happy future employee make. And don’t even get me started on the preconceived notions about the type of work our children with significant disabilities will be targeted to perform. Trust me, if you ask Ashley to stuff envelopes for eight hours a day, five days a week, envelopes won’t be the only things getting stuffed.

School districts need to lighten up. Let our children with disabilities enjoy their high school years as much as non-disabled students. Don’t start them down a path to stress and then wonder why it costs so much to provide care for them later in life.

Chill, baby….

What Comes Next?

It’s frightening to have your child approaching the age when they must leave school and know that they are not quite ready for the adult world. Our school systems do not, in my opinion, prepare our children with disabilities to enter the work force. In fact, many studies of children with disabilities say exactly that. One of the studies that was so frightening to me was done by Dr. Jerry Petroff, an expert in the field of deafblindness who wrote “Lessons from a Post-School Study of Youth with Deafblindness.”

So what can we as parents do to change the future for our adult children with disabilities? There are not many good answers, unfortunately, but one which has caught my attention is programs currently being offered by some colleges.

In my city, our local community college has a program called PAVE. According to the PAVE website, “the Program for Adults in Vocational Education (P.A.V.E.) is a vocational training program for adults with mental disabilities. P.A.V.E serves students with mild mental retardation, emotional disabilities and learning disabilities. The overall purpose of P.A.V.E is to provide a post-secondary vocational training program that incorporates functional academic instruction, job skills training and community-based internships.”

Getting into PAVE is not a sure thing. Students still must pass a readiness test, and must meet certain qualifications. But if a student with disabilities is admitted, the whole focus of the program is preparing that student for adult life in the workforce.

Another program which sounds even better is offered at UCLA. Begun two years ago, UCLA’s pioneering Pathway Program has produced its first graduating class. The two-year postsecondary program gives students with intellectual disabilities an opportunity to gain independent living skills. At the same time, they experience college life and explore vocations through UCLA Extension. Here is a link to Patricia Bauer’s Disability News website that contains two very special videos of this year’s Pathway’s graduating class.

I’m very glad that our post-secondary schools are stepping up to the plate for our students with disabilities. If our K-12 schools won’t help prepare our children, it is indeed comforting to know that our colleges and universities are beginning to address this challenge.

Hope For Independence

I’ve always wondered how Ashley would be able to travel and live independently given both her hearing and vision loss. She has a white cane, and that helps some. But, because she is also deaf, she can’t hear oncoming traffic, the sound of a siren, a car horn, a doorbell, or a smoke alarm. So short of a sighted guide and a fulltime personal aide, I didn’t know if she would ever be able to travel and live independently. But my hopes are renewed after reading this story in the Jerusalem Post.

The Ali Hope Foundation is one of only a small number of programs worldwide to train dogs for individuals who are both deaf and blind. As noted in the news story, of those programs, most, such as Leader Dogs in Rochester, Michigan, train the dogs only as guides, not assistants or alarm messengers. "Leader Dogs are trained to guide individuals who are both deaf and blind, not to alert them to sounds," states the Leader Dogs Web site. Others teach dogs to perform both guide tasks and sound alert tasks, but separately.

But the Ali Hope Foundation is providing a different perspective and the hope of independent travel and independent living for people who are deafblind. The isolation felt by many who are deafblind can be reduced by the dogs trained by Ali Hope, and my hope is that this model will also be embraced in the United States.

Good work, Tamara Meirovich!!

Support That Works

Dave Hingsburger wrote a very moving post yesterday on his blog, Chewing the Fat, about a young man who felt completely and utterly alone although he had been provided supports throughout his life – supports for inclusion, for a planned and programmed life, and for community integration. But what touched me even more than Dave’s post was a comment left by one of Dave’s co-workers. Manuela said:

"Far too often the people that provide support think their job is to be a friend. Our funding in Ontario even encourages that belief. We provide funds to families encouraging them to hire respite or contract workers - to take their child out to the movies, to sports, to the community, to be a friend. We reward people for being great friends instead of helping one to find friends. The latter is a much more difficult job that many of us will not take on, that many that hire us don't want us to do. It’s no wonder we end up with so many lonely people surrounded by so many paid supports."

I could very easily take out the young man in Dave’s story and replace him with my Ashley. Once again, Dave and Manuela have opened my eyes to what should have been visible in the first place. Thank you both…

And to all the parents of children with disabilities and to all the paid support staff, please take a moment to consider Dave’s and Manuela’s words, and ask yourself what you can do to prevent rather than foster profound loneliness.

All Shoppers Welcome? Doesn't Seem So.

Even though I knew shopping on Black Friday would be difficult for Ashley in her wheelchair, I thought it would be because of the crowds of people. However, it wasn’t the crowds (the sagging economy seems to have played a major role in keeping folks from shopping), it was the stores themselves that made the task more than a little difficult.

At Circuit City, our first stop, getting into the store was a piece of cake – nice wide wheelchair ramps, an associate standing at the door to open it for us, and an entry area that easily accommodated both wheelchairs and lots of people. But things changed as we tried to make our way through the store. The aisles at Circuit City are wide making wheelchair travel easy except on days when extra kiosks of products are placed right in the middle of the aisles. Having worked in retail many moons ago, I know the point of the intrusive kiosks is to attract attention of shoppers. What it meant for Ashley was that she couldn’t go down the aisle unless I moved the kiosk out of the way. Some I could move, and some I couldn’t. Overall, our experience in this store was not terrible. We were able to find and procure everything we wanted with just a little bit of inconvenience.

Our second stop was World Market. The shopping experience there was much, much worse than Circuit City. First, the curb cut designed to allow wheelchair access to the store had a large, square brick post right in front of it on the sidewalk. There was no way for a chair to go up the ramp and do anything but hit the post. Since I had my two sons with me, we were able to lift Ashley’s chair over the curb. Inside the store was not much better. Again, there were kiosks blocking most aisles, and the aisles themselves were so packed full of merchandise that there was no way a wheelchair could safely maneuver. I waited at the front of the store and sent my sons in search of the two items I wanted.

Best Buy was a lot like Circuit City but with more people. Target was the most accessible store with wide aisles unobstructed with extra merchandise. The associates at Target were also very helpful and willing to provide whatever assistance might be needed. And, their bathroom was the most handicapped accessible.

Finally, we went to Petco and 5 and Below. Petco wasn’t too bad, just laid out in a really strange way. We had to keep Ashley’s chair on the tile aisles and away from the carpeted areas, and getting to the cash register was not easy either. 5 and Below, as I expected, was almost as difficult as World Market. Lots and lots of merchandise were stacked in the store and the aisles, even without the extra merchandise, would have been very difficult to maneuver. But, one of the strangest things was that the cash register and attendant were on a raised platform. I was able to reach them, but had Ashley or anyone else in a wheelchair been trying to pay, I don’t believe the would have been able to reach the cashier. The staff at this store, seemingly seasonal high schoolers, was not the least bit helpful or accommodating.

These are tough economic times our nation is facing. I would think that stores would want to make sure anyone that wanted to shop would be able to shop. Rather, some stores like World Market and 5 and Below, are excluding 5% of the population just because no one has paid attention to details.

Loving Life

All parents want their children to have good adult role models. But finding such a person for a child that has a low incidence disability, such as deafblindness, is extremely difficult. Ashley knows some adults who are deaf, and some other adults who are blind, but in the 11 years she has been my daughter, I have never met a deafblind adult that I believed would be a good role model.

I want to find a deafblind adult who is happy - who does not linger in self-pity - one who feels she or he has been successful in life, in whatever way they define success - and one who has proven that deafblindness is not a sentence to an isolated life.

A friend of mine sent me a link to a newspaper story about a woman who is deaflind. Interestingly, this woman lives about an hour away from us. Nancy Brown, who is 65 years old, was born deaf and has gradually lost her sight. Nancy has Ushers Syndrome. But Nancy also has something else - a zest for life and a drive for independence. The last line of the article sums it up well. Nancy said:

"I love my life so much that I could not hate myself for what I am," she typed. "I am deaf and blind. Why should I hate myself?"

I think you will enjoy reading about Nancy as much as I did!

Growing Dreams

Ashley loves plants and flowers. From the first days she was able to wobble across our yard, she has headed straight for bushes and flowers. She seems to have an innate ability to know which plants are edible and which are not. So, just in case you were wondering – pansies are fine to eat, azaleas taste bitter, and honeysuckle is the best!

Because of Ashley’s enduring interest in plants and flowers, her school team and I have discussed the possibility of Ashley working in a greenhouse. So imagine my delight in finding the following website:

Growing Dreams

One of my favorite things about the website – the statement in the upper left corner – “We honor the concepts of humanity, dignity, respect, hard work, fellowship and friendship.”

I guess I am either going to have to move my family to Chicago or try to start a similar enterprise here!

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?

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?

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?

The Dragon Is Slain!

Two and a half years ago, I requested that Ashley’s health insurance program provide modifications to our bathroom. I strongly believed that with the appropriate modifications and support, Ashley would be independent in her personal care tasks despite her significant disabilities. I knew then and I know now that she can bathe and shower by herself – she can wash her own hair and brush her own teeth – and the only support she needs for toileting is a grab bar. But, she has been unable to do these things because she did not have the appropriate supports. Ashley’s insurance program, despite the fact that they have never laid eyes on either Ashley or our bathroom, decided that she did not need the supports.

When making the initial request, I made sure I had all the necessary paperwork to back up the request. I had reports and letters of medical necessity from Ashley’s pediatrician, her neurologist, her ophthalmologist, and her occupational therapist, the person who had been working for many years to teach Ashley how to accomplish her self-care tasks. However, within a few short days of making my request, the insurance program denied it. Their reason – the type of insurance waiver Ashley was on didn’t allow for environmental modifications. There was no discussion of medical necessity, or the fact that the modifications would ultimately reduce costs in other areas. It seemed that the insurance program would prefer Ashley be institutionalized and ‘taken care of’ rather than provide the tools she would need to become independent. So, I appealed, or rather, I contacted an attorney and then appealed the decision.

The lawsuit weaved its way through the denying organization, a so-called independent hearing officer (who just happened to report to the head of the denying organization), Federal court, and back again to the denying organization. Witnesses were subpoenaed and interrogated. The Attorney General’s office for my state became involved, and finally a trial was held. Six months, yes six months, after the trial, the ‘independent’ hearing officer ruled – the request was again denied. I’ve written previously about all this, albeit a little obtusely since the case was still in litigation.

As my attorney and his staff were preparing yet another appeal to yet another court, a settlement offer was proposed, allegedly to hold down the costs of more legal wranglings. So, where are we today? According to the details of the settlement agreement, all (yes, ALL) of the modifications I originally requested will be made. In addition, remember the reason I was given for not granting the request initially – that the type of insurance waiver Ashley was on wouldn’t cover environmental modifications? That has changed also. Any person on that specific waiver will now be able to access up to $5000 per year for environmental modifications.

I have contacted a contractor who will begin the modifications in early July. Ashley will finally have the chance to reach her potential in the area of independent living, and her future now holds the promise of staying in her family home for the remainder of her life. Was the fight worth it? To me and to Ashley, most definitely. To all the taxpayers who bankrolled the long, drawn out battle – doubtful.

Getting Personal

One of the more frightening aspects for me of having a child with significant disabilities has been the hiring of personal care aides. I'm so very grateful that Ashley has aides, but finding and retaining really good people is daunting, to say the least.

Personal care aides assist a person with a disability with many things, even very personal and intimate everyday tasks like bathing and toileting. I still am very uncomfortable with a new hire seeing my teenage daughter naked and helping her with those tasks.

Ashley and I have been very blessed to find Amy, the aide that has been with Ashley the longest, and who is more a part of our family than an aide. But there is still a need for backup support, and that's where my discomfort surfaces. So I did some Google searches on finding, managing and retaining quality personal care aides, and I found a great resource document. It is a publication of the Research and Training Center on Independent Living, and it is titled, "A Step-by-Step Guide to Training and Managing Personal Assistants: Consumer Guide ."

There are chapters on hiring and conducting background checks, supervision and management, performance checks, record keeping and paying an assistant, and avoiding ripoff by assistants. There is even a chapter titled, "The Intimate Side of Life."

It really is a great resource - very practical and easy to understand. I encourage anyone who, like me, is a little uncomfortable with the transition to personal care services to take a look at it.