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.

Soup with Goldfish Crackers

My friend, Lynnette, is a single parent to a beautiful daughter named Brooke. Brooke has severe disabilities and lives each day with a trach and a ventilator. She goes to her neighborhood school and has nursing support while at school, and for a few hours each Saturday. Other than those times, Lynnette is her only caregiver.

Lynnette works full-time at a school that serves children with severe disabilities. She has dedicated her life to caring for the most fragile children, children who like Brooke, have smiles that light the world and needs that often seem overwhelming.

Oh, and Lynnette has multiple sclerosis.

Why am I telling you all this? Well, I'm going to ask each of you a favor.

Lynnette, as you can imagine, has to take a lot of time off from work. Mostly the time off is for Brooke's doctor's appointments, but often the time is for her own doctor's appointments. It doesn't take long at all for all Lynnette's school leave time to be exhausted. She is now in the situation of having to take leave without pay. Her paychecks are hundreds of dollars short each time. Imagine for a moment how difficult that must be for a single parent. But Lynnette, like most of us parents of children with significant disabilities, has her priorities and nothing, not even lost pay, will stand in the way of caring for her daughter.

Ok, here comes the favor.

Twice a year, Lynnette's school has a contest to see who can collect the most Campbell's Soup Label points. The winner gets a full day off. That is like manna from heaven to Lynnette.

So I need your labels! We need to make sure that Lynnette gets that day off - and that her burden is lightened, if only just for a day. And in the process of helping Lynnette, we will also be helping her school and the precious children that attend there.

The labels are on every type of Campbell's soups. The Soup At Hand ones have 5 points each. The regular soup cans have 1 point each. And recently I found some boxes of Goldfish crackers that have 100 points each!!

I will gladly reimburse anyone for sending me labels. If you are able to help, email me (email link is on the right side of my blog), and then I will send you my address.

Thank you in advance for considering my request!

How To Begin?

Are you the parent of a teen with significant disabilities, or do you provide services and support to that teen? If so, I need your advice.

It’s transition IEP time for my Ashley. Although technically my school district and I should have been talking about transition already (Ashley is going to be 16 years old next month), I was too focused on her moving to high school and receiving appropriate educational services. But now it is time, and I honestly am not sure where to start.

I mentioned last week that I was very pleased with the IEP and transition planning for my 20 year old daughter, Jessica. But Jessica’s disabilities are more commonplace than Ashley’s. Jessica fits into a model transitional approach and Ashley does not.

Ashley, as you may know if you have read my blog previously, is deafblind. She also has a seizure disorder, and her seizures are not completely controlled by medication. She still has 2-3 seizures a day on a good day. She approaches life with unbridled exuberance and doesn’t mind sharing her opinions, likes and dislikes with anyone.

Throughout elementary school and middle school, my school district underestimated her abilities. High school appears to be different. She has teachers who care and believe in her, and I truly think they want a good transition plan as much as I do.
But how do we get there?

So here’s where I need your advice. What approaches to transition planning for a teen with significant disabilities have you seen work successfully? What were the pitfalls along the way? And most importantly, is your child or the child you support happy with where he/she is in life post-school?

Thank you in advance for any help and advice you have to offer!

Trying To Keep Dry

Ronnie needs an umbrella for his wheelchair. When we were waiting for the school bus last week when it was raining, he had a tough time staying dry. Both Chip and I had umbrellas - one we were holding over Ashley, and a really big one we were holding over Ronnie. But, his pants and shoes still got pretty wet.

So, I've begun my search for an umbrella and holder that can be attached to his wheelchair, but so far I'm not finding much.

I googled 'wheelchair umbrella', got lots of hits, and almost all of them were for this:



But this was a very specific warning that the product contained latex and was not appropriate for people with latex allergies (Ronnie). And, they weren't cheap. this particular model ranged from $30-$60.

So I tried another angle. I searched for 'golf bag umbrella holder', and found this:



It looks like it could hold any umbrella, and it looks pretty well made (at least in the picture). The lowest price I could find for it was $16.

I'm going to try to find a golf store in town and see if they have the holder. But I wondered if any of you had figured out the umbrella/wheelchair thing. If so, what was your solution?

Put On Your Dancing Shoes

This is a plea for help! It’s December 22nd and I still need some Christmas gifts for Ashley. I know exactly what I want to get but don’t know how to find it.

Ashley is deafblind, but she loves loud music and loves to rock out to it. She will not, however, wear headphones. She wants to watch something on TV while the music is blasting. I’m not sure how to explain it, but she seems to need to feel the music (lots of bass) and also get some visual input at the same time. To her, that is the equivalent of a teenager listening to an IPod.

So what I need are ideas about DVDs or BlueRays that would have bright colorful characters or people (can be cartoonish) singing songs with simple melodies. For instance, one that she really likes is on a Sesame Street DVD we have. There is a cartoon lady with a quirky voice singing Itsy Bitsy spider. Ashley likes to do the hand movements and sway her head and body at the same time.

The disk needs to be all music (and dancing if possible), not something like the Imagination Movers who sing occasionally but talk in between songs. Does this make any sense at all??

Actually, I can’t wait until she is older and I can take her to an actual dance club with really loud music and flashing lights, but 14 is a tad too young for that, don’t you think!?

Today I am thankful for the power of the Internet in helping to find something that I really can't define well

A Bleak Future?

I’m really starting to worry about my 17 year old son, Corey. If you’ve been a long time reader of my blog, you probably know a little about Corey, but if not, I’ll summarize.

Corey spent the first 8 years of his life living on the streets of Baltimore with his prostitute, alcoholic, drug addicted birth mother. Then, from ages 10-14, he was reluctantly rescued by his grandparents who took him to live in their Florida retirement community. After years of searching for another home for him (apparently his aunt and uncle, who live less than 5 miles from me, weren’t interested), I was approached and agreed to let him join my family. I first introduced my readers to Corey back in 2007.

Corey is diagnosed with depression, ADHD, and Asperger’s Syndrome. While his depression and ADHD are well controlled with medication, it’s the Asperger’s that has me worried for his future.

Corey has said he wants to join the military. I don’t think they will take him. His social skills are those of an 8-10 year old, and holding down a job isn’t something I believe will come easily for him. His grades in school are not good, and college, even community college, seems well out of reach.

So what will happen next year when he graduates from college? And what will happen with the rest of his life?

Even in a loving home, a home that balances limits with a chance to grow, he hasn’t grown. He is still a 10 year old ball of emotions with the cognitive ability of maybe a 9th grader, and the hormones of a grown man. How can all that be packaged into an employable person, a person who can provide for himself in the not too distant future?

I welcome any advice and suggestions any of you may have. Heck, I may even be willing to pay for them!

The Toughest of Times

One of my biggest fears as a mother is not being able to provide for my children. Given the current economic environment, and the fact that my employer is laying people off at an alarming rate, this fear is ever present.

But, I still do have my job. I am still able to provide for my family. Little has changed other than the cost-saving measures I have put in place over the last year. They are small things – like buying generic or store brands at the grocery store – but I believe that it can make a difference.

Two things happened this past weekend however to make this disastrous economy rear up and slap me in the face.

First, a friend of mine that is in her 50’s and who had worked for IBM for over 20 years was laid off. Her husband is in real estate, and not being the most eager beaver, almost never sells anything. That is nothing new, but now that my friend has lost her job, the meager amount her husband brings in barely buys the groceries.

My friend has searched and searched for a job with no luck. She is currently a sales clerk at a clothing store and bringing home minimum wage. The family is living on an equity line of credit, unable to plan for college for their high school senior daughter, and as she said, probably two months away from losing everything.

The second slap in the face happened when we posted something on freecycle.org. We had been going through all our Christmas decorations, and decided that we had too many lights, cookie tins, stuffed Christmas animals and other general decorations. We decided to post these on freecyle.org and give them to the first person who responded. Within an hour, 55 people responding asking for the decorations. Each one had a story, and the stories were all very sad, e.g. “I’ve been laid off, can’t provide Christmas gifts for my children and the lights would make them so happy.”

Fifty five people in an hour – fifty five people who can’t provide Christmas – too many children to count who won’t know the joy of finding gifts from Santa – fifty five families who just want some lights to put a smile on the faces of those children. It made me want to go out and buy lights for everyone who responded (which of course I can’t do).

What I can do is to remember these events and do whatever I can to brighten the holidays for someone else. And I urge you to do the same thing.

It can be something small and simple – take some food to a foodbank, drop some change in the Salvation Army kettle, visit a neighbor who spends most of their time alone, call an old friend, help out at a homeless shelter, befriend a child in a group home. But I challenge you all to do something.

Even when times are bleak, I believe we can find ways to help others. I would love to hear your stories of helping….

Today I am thankful for all that I have and that I am able to share what I have with others.

Smile!

Ashley had a visit with her new dentist yesterday. It went much better than the previous dentist visits. The new dentist is associated with our local Children’s Hospital, and as such, is more comfortable treating children with significant disabilities.

The dentist let Ashley remain in her wheelchair rather than asking her to move to the examination chair. The chair move had always been problematic in the past. Ashley feels comfortable in her own chair, and the sensory impact of moving to a strange chair would be the first step in making the visit difficult.

The dentist and helper also understood that Ashley was deaf and that I needed to interpret what they were saying to her. Because Ashley doesn’t wear hearing aides, people often assume she can hear (even if I am signing). Her previous dentist, for example, would continue to talk to her in a low, soothing voice that I’m sure worked for most of his patients, but not for Ashley. Ashley would soon get frustrated because she knew he was trying to communicate but she couldn’t understand.

Previously, to even clean Ashley’s teeth, she had to be restrained. But with the new dentist, she just sat there and opened her mouth. Her teeth were cleaned, a little bit of tartar was scraped off, and she got a fluoride treatment. And afterwards, she was still happy!

The only negative of the visit was that the dentist was unable to recommend an orthodontist. According to the dentist, most orthodontists are not familiar with or comfortable with sedating patients. And Ashley would more than likely have to be sedated for orthodontist visits. The dentist suggested I try the dental clinic at our local teaching hospital, but she wasn’t hopeful that even they would be in the position to sedate. The dentist did agree that Ashley could greatly benefit from orthodontic treatment, but like me, doesn’t know how to make that happen.

So, readers, I need your help. Do you know of an orthodontist that might be willing to work with a child with significant special needs and who would be willing to use sedation if necessary? I would be willing to travel to the Tidewater area, the DC Metro area, Charlottesville VA, or Raleigh NC.

What's In Your Crystal Ball?

I need your opinions on something.

Once a child with disabilities reaches middle school and beyond, schools place a bigger emphasis on vocational skills - preparing the children for jobs once school is over. IDEA 2004 definitely supports that:

In “Findings” of IDEA 2004 (Section 1400(c)), Congress found that “30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children,” educating them in the regular classroom so they can “meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible.” (Section 1400(c)(5)(A))

But how does a school district and an IEP team determine what are appropriate vocational skills for a student? I would like to know your experiences, and if your child is too young for you to have addressed this issue yet, what are you expectations for the time when your child is old enough to discuss transition and vocational skills?

Here are some examples:

Do you feel it is appropriate for students with disabilities to have jobs in the school such as wiping tables and chairs in the cafeteria - or delivering mail and newspapers to the teachers - or cleaning up a classroom at the end of the school day? How about sorting utensils or putting toothbrush holders together? Or, learning how to use simple tools like a screwdriver and hammer? Would you like to see your child take care of plants in the school building or clean up/feed pets like hamsters or fish in the school?

Has your child had a great vocational training experience while in school? If you child is older and out of school, did the skills taught in the school contribute to their success as a young adult? Or, did you feel like your child was set afloat at the end of his/her school career with no skills to support productive employment?

What are your dreams for your child as they related to adulthood, employment and independent living? Do you feel your school team shares and understands your dreams?

And finally, are you frightened what the future holds for your child with a disability? I am, and that is why I need help with all these questions...

Monday Musings

My children and I met our friends Lynnette and Brooke at the Norfolk, Virginia zoo this past Saturday. I have pictures, rescued from my parent's estate, which show my brother and me as 3 year olds feeding the ducks at that zoo. So, I was interested to see how different it would be now so many years later. And not surprisingly, it looked completely different.

The remodeling included many accessibility features which pleased me, and anyone in a wheelchair plus one companion could enter at no charge. That's an interesting feature that I have never seen at any other public institution.

The walkways were paved for the most part, and the bathrooms had some of the best accessibility features I have ever seen. But, the planners fell short on one very important thing. All the exhibits have fences around them, and the top rail of the fence falls at perfect eye level for someone in a wheelchair.

Neither Brooke nor Ashley could see past the fence. I wonder, when facilities are incorporating accommodations for people with disabilities, do they ever ask a disabled person their opinion?
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My son, Corey, who has been with our family for only four years, is diagnosed with Asperger's Syndrome. I know what some of the features of that particular diagnosis are, but is an extreme lack of attention to detail one of them? I can't find anything about that specifically, and wondered if other parents had experienced the same thing.
____________________________________________

Ashley is being evaluated by a group of communication specialists from our local university. The evaluation was initiated about many, many requests to her IEP team. In preparation for the evaluation, I was asked to videotape Ashley communicating in the home and community environments. The school staff would be videotaping at school.

Last week I requested copies of the school's videotapes, or at least the opportunity to come to the school to view the tapes. The school's response was "We'll have to discuss that among ourselves and get back to you."

Now I know they know I have a right to view those tapes. What is up with their response?

Looking For Love

I wrote last week about my concerns for my daughter, Jessica, finding a job. I am also concerned about Jess finding love.

Jessica is 18 years old, and quite interested in the opposite sex. She always has been, but as a young child we attributed her extreme interest to her diagnosis of Reactive Attachment Disorder. One of the symptoms of RAD is sexually provocative behavior at a young age. But now her interest is different.

The objects of Jess’s attention are boys her own age rather than men that are much older and in roles of authority. She seems genuinely interested in developing an age-appropriate relationship, dating and eventually falling in love. My concern arises because Jess’s cognitive age is more that of a 6-7 year old.

How do I ensure that she is not taken advantage of by a boy that is her age chronologically but much older cognitively? How do I help her understand what things are appropriate and what things aren’t? How do I explain a healthy sexual relationship to someone who is essentially 6-7 years old?

I want Jessica to fall in love, get married, and have children if that is her dream. But I don’t have a clue how to help her realize that dream. She doesn’t even seem to understand the biology of her body although I and her teachers have worked for years to help her understand. And as I mentioned in my earlier post, I don’t know how her aggressive outbursts will allow for a close relationship, when in fact, the outbursts get worse as she gets closer emotionally to people.

I know these issues must have been tackled by many others, and it is their advice I am seeking. Or, if anyone is aware of other resources that might help Jessica with these issues, please let me know.

Another Failure

On October 7th, I wrote about a young girl who had been failed by both the system and, in my opinion, her family. That same day, the following story of a mother, overwhelmed with the events of her life, took both the lives of her children and herself.

Suicide Haunts A Kentucky Family

This mother has also been failed by the system. One of her daughters was diagnosed with a rare disorder called cri du chat syndrome. Like many rare disorders, very little support is available at the local level - the level where parents are most likely to seek help.

There is a national support group, but again, what this mother needed, and what most of us raising children with disabilities need is local, available support. If you have support groups where you live, I urge you to attend and participate. If you don't have a support group, I urge you to contact a national organization and start one in your area.

We all need support - even those of us who think we don't feel overwhelmed.

Where Have You Been All My Life?

I mentioned in yesterday’s post about my bathroom renovation that the new bidet toilet seat deserved a post of its own. I admit I was a little squeamish about using it the first time, but after one try, I’m sold on the concept, and wonder where this thing has been all my life.

If you’ve traveled to Europe, you are probably familiar with bidets. They usually sit beside the toilet and provide cleansing to the privates. Of course, as Americans, we often have no clue what a bidet is when we first see one. I have heard stories of young travelers believing the appliance was meant for hand washing or to substitute as a water fountain (yech!). But when the concept is finally explained, you will notice an imaginary light bulb above the head of most people and hear the ‘oh yea’ come out of their mouths.

In America, bidets never really caught on. More often than not, there is not enough room in our bathrooms for a second ‘throne’. That was definitely the case in my bathroom. My house is 48 years old. When it was built, emphasis was placed on large living areas and bathrooms remained small. So when I was reviewing options for our bathroom renovation, I was quite excited to find something called a bidet toilet seat. In September 2007, the New York Times ran this article on the subject of bidet toilet seats.

The one I settled on for our bathroom is manufactured by a company called CleanButt. Really. I’m not kidding. But setting aside the giggle-inducing name, this thing is incredible! I can adjust the temperature of the toilet seat. I can adjust the temperature of the water. I can change the position of the spray and can even have the spray pulse. The adjustments can be made to make sure every part of one’s privates are cleansed. And then after the warm water spray, I can turn on the air dryer – yes, I can blow dry my butt! And the best thing – I can do all those things with a remote control!! My toilet has a remote control!

Seriously, I sought out this solution because Ashley’s lack of fine motor control means she doesn’t always get as clean as she should after toileting. That problem is now solved and she also loves the bidet seat. After sharing this information with some of my friends, they immediately began brainstorming about others for whom this seat would be beneficial – one friend’s mother with rheumatoid arthritis who requires assistance in the bathroom, another friend’s young child who is working on toilet training, and another friend’s family member who has lost an arm.

I urge you to visit the CleanButt (giggle, giggle) website and take a look for yourself. They even have a video you can view, but don’t worry, they don’t have a real person using the bidet in the video.

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…

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?

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...