No End to Learning

This morning was thrilling. Our speech therapist, Lauren, has been working each week on teaching V to use the Tech Speak voice output device to communicate by touching the pictures symbols on the device. A year ago, V thought the device was a toy and would touch random pictures to hear the words, but did not understand that it represented a way for her to talk. During speech therapy this week, she pressed the picture for "I want" and then the picture for "stickers" to form a complete sentence. Why is this a big deal? It is a big deal because, until now, V only used one word utterances,like a series of clues. She could not put two words together. Okay, it was in a speech therapy session, and that is great, by itself. But then, today, she did it again without prompting when the device was presented to her. So, she is transferring the skill of putting two words together to ask for something she wants as part of her day, instead of in a structured therapy session. For V, this is huge progress toward communicating more like the rest of us. She will be 23 years old next month. I remember, years ago, that professionals were trying to teach her this very same skill, and it didn't take. At that time, and in that situation, she was not receptive.
I look forward to continued progress and acquisition of skills for V over the many years ahead. The end of formal education for disabled individuals is an artificial boundary, just as it is for the rest of us. I believe it is important to continue to address areas of need with therapy after formal schooling ends and to make it part of any adult program. There is no deadline for learning and no point that it is too late to try for progress toward a better quality of life.

Paying your New Directions Support Staff

The recent back-to-back blizzards wreaked havoc with the work schedules of V's support staff, causing everyone to miss work because roads were unsafe and impassable. Fortunately, some of V's support staff had unused paid vacation days that they could request to get paid for the missed time. Some support staff thought that they should be paid for the missed time without using their paid vacation hours.
Well, here is the policy, as I have been informed regarding this matter.


There are no means through New Directions funding to pay any employee for unworked hours except vacation pay, and that is only if it is included in the ND plan.


Support staff wages are paid through Medicaid funding, and to falsify timesheets is a federal offense (Medicaid Fraud).

So, when you develop a plan of care and you want employees to be part of the plan, you can not offer sick leave. It is not allowed. You can not offer Administrative leave. There is no way to pay for snow days, other than paid vacation that has already been added to the budget and POC prior to the event.

If V's support staff miss time, I will allow them to trade shifts with another staff so that they can make up the lost income and I will offer them additional hours at a time when no other staffing is in place. I can not write on a time sheet that they were here if they were not.

Bonuses are allowed to be built into the POC/Budget, and I use these in place of health insurance, since some of my staff have insurance through their spouse. This way, there is a means to pay for private health insurance for those who need it, without paying for it for the staff who don't need it.

Be Part of the Research on ASD

As I was researching solutions to sleep disturbance issues for my last post, I came across the IAN website. I have copied the description of IAN.org from the website for your information and have pasted it below:
"
IAN, the Interactive Autism Network, was established in January 2006 at Kennedy Krieger Institute and is funded by a grant from Autism Speaks. IAN's goal is to facilitate research that will lead to advancements in understanding and treating autism spectrum disorders (ASDs). To accomplish this goal, we created the IAN Community and IAN Research.
IAN Community

The IAN Community is an online environment designed to act as an inviting library and meeting place where everyone concerned with autism spectrum disorders can learn more about autism research. Everyone can participate and benefit from the IAN Community.

Our goal is to help you:

* Understand the research process
* Keep up with the latest research findings, news, and events
* Understand the value of participating in autism research
* Influence the direction of research "

There. If I would summarize what I have found on the website: It provides descriptions of research studies that are currently being conducted throughout the country, that are still recruiting participants. It publishes the results of completed studies. It allows users to participate in online surveys about autism or ASD's. There is a wealth of information here and an opportunity to be counted in the research if you want to be. I think it is worth checking out and I have registered for it. I have learned from reading research results on IAN that my daughter is typical of girls with ASD's in that 1. she was diagnosed before 12 mos of age, 2. She has cognitive impairment, and 3. She has a seizure disorder. I did not know that these features are far more prevalent in girls that have an ASD diagnosis than in boys. So, I learned something.
I also learned that Vanderbilt is doing a study on sleep disturbance in people with ASD's, and you can read about it or email the researcher with questions from the report on the IAN website.
To visit the IAN website, copy and paste this URL:
http://www.iancommunity.org

Sleepless Nights

I wonder if there is a parent who has a child with an ASD who has not lost sleep at night because of the irregular sleep patterns of their child. I have certainly been through the problem and know of several other families who still struggle with sleepless nights. If you do an internet search for "regulating sleep in autistic children" you will find many links with lots of suggestions that may or may not solve your problem. One link suggests that giving melatonin to the individual with sleep problems might help. To read more about that copy and paste this url: http://sleepeducation.blogspot.com/2009/04/melatonin-improves-sleep-problems-in.html
As of June 2008, Baylor College of Medicine began conducting a clinical trial on this very problem. I have not found posted results and I do not know if the study has concluded yet. It may provide some answers. To read about it copy and paste this url: http://clinicaltrials.gov/ct2/show/NCT00691080
Someone who was clearly desperate for a good night's sleep has even invented a bed to safely contain someone who cannot be awake and unsupervised safely at night. More information about this is found at http://noahsworldllc.com/
Another site I found suggests using a weighted blanket or white noise. To read this article, copy and paste this url: http://autismaspergerssyndrome.suite101.com/article.cfm/autism_and_sleep_disorders
That same article talks about doing heavy work activities to help improve sleep, and provides a link to an explanation of what "Heavy Work Activities" are.
There are many ideas available that I never knew about or tried. I would be interested in feedback from anyone who tries any of these about the effectiveness.
Any shared stories of success might help another family, so please post comments about any solutions that you have found to this problem.
When I had this problem, we turned the doorknob around so that the lock faced the hall instead of the bedroom, and locked the door at night. For two years, V would knock on the door every 2 hours throughout the night, as a result of a medication change. We tried room darkening shades and the doctor recommendation of benadryl at bedtime, without success. Our behavior analyst suggested that we extinguish the behavior by ignoring the knocking instead of getting up to put V back to bed. She suggested moving V's bed to a location of the house that would make it easier to do this. We moved V's bed to her playroom in the basement and set up a baby monitor to listen for any trouble at night. Unless she was distressed, we ignored the knocking. We turned off the fuse providing power to her lights so that she could not brighten the room when she got up. The result was that she would go back to bed when no one responded and the knocking became less and less frequent until finally she was sleeping through the night again, and so were we. She likes having her bed in her playroom, where she can curl up and take a nap after her community outings if she is tired. The solution was successful and lasting for us.

On a Roll!

Six weeks ago I was wondering how the introduction of two new additions to the support team would be received by V, especially when it meant that she would have to give up leisure activities 3 nights in a row to work. Everyone wondered if she would be able to handle the adjustment to her schedule and to 2 new people all at once. Well, all of the hard work by our speech therapist over many months to make that hour of work once a week a positive experience for V laid the groundwork for a successful start with other specialists. We decided that we would keep the time of day for these sessions consistent and I think that helped. The focus on establishing a good rapport before making demands has helped. The result is success on an unexpected level. V has been receptive and cooperative with the new specialists, responding to them in the same way that she has learned to respond to our speech therapist. Not only that, the level of work she is doing with the speech therapist is accelerating since the addition of the new team members and she continues to surprise her team with what she can do. I feel so proud of her and her team, and so encouraged and hopeful about the progress that lies ahead.
The funny thing is, V is like me, in that the less demanded or expected of us by someone - the more we want to do. I guess we are both a bit contrary. The more we have given V respect for her wishes and feelings, the more she is praised for what she does, the more pressure that is removed from the situation, the better the performance we receive from her, happily and willingly.
I think there is a lesson here. She can't speak her feelings, type them or sign them, and there are many things she can't do for herself or understand about the world, but she has her opinions and feelings. She wants the opinions and feelings to be respected, just like the rest of us, in spite of her limitations. The more we honor small signals that she has had enough, needs a break, or feels frustrated, the less she needs to escalate to a physical response to get her point across. She is unlearning the need to fight for control over her life. We are un-learning the habit of forcing our will upon her. To impose a rigid schedule upon this person is to declare war upon her free will, and her response is to fight back. To control her would be to break her spirit and it hasn't been done yet, but is it something that we ever should have desired? Safety and health require some constraints upon the free choice we want to offer, but not that much of the time.
Exposure to the world she lives in, seven days a week, over 18 months, has increased V's tolerance for stimulating environments and has given her the opportunity to practice appropriate behavior in public situations to the point that she is appropriate most days in most situations. This is an ongoing process. Much less control in these public situations is necessary now than when we started taking her out every day.
The better she does, the less we attempt to control her, and the less we try to control her, the better she does.
I can't wait to see where we are a year from now with all the supports that are in place and the active role that V is taking in her own growth.

Resources By State

I just added a link to State by State Resources from Autism Speaks. I can't personally vouch for any of the service providers, and it is not a comprehensive list. V uses dentists, doctors and specialists that are not on the list. My friend uses a music therapist that is not on the list.
There was already a link to a list of resources provided by Autism Pathfinders, but each link offers different resources. If you don't find what you need in one list, check the other. I wish there was one comprehensive list, but I have not found that yet. An individual does not have to be autistic to benefit from these community resources, so whatever the disability, if you need support services, a doctor, or a specialist, check the lists.
If anyone has found a resource in the community that they would like to make others aware of, please post the information in a comment, and I will add a post to make others aware.

Solving a Bath Time Problem

For years, bath time has been problematic. First, the transition into the bathroom to take a bath was tricky. If V is involved in an enjoyable activity, she doesn't want to stop to go take a bath. So, first, a natural break in the activity at hand needs to occur to increase the chance of a smooth transition. If she is watching t.v., it can be the end of a show. If she is coloring, it can be the point that she puts down the crayons. Second, she becomes obsessed with running the water, as hot as it will go, far beyond the point that you would want to send water pouring down the drain to avoid a spill over onto the floor, and so hot that her skin turns bright red. What is a painful temperature to me, is not painful to her. This obsession with flowing hot water has led to many a conflict in the tub. V turns the faucet all the way to the hottest level, and I (or the caregiver) turn it back to a cooler temperature or I turn it off because the tub is full and the bath is over. Then, V turns it back on, again, as hot as it will go. Back and forth it goes, until she becomes frustrated and agitated, yelling and splashing water onto the floor and whoever is present. This is not fun for anyone. When the obsession begins, no cajoling, prompting, or demanding that the water stay off will stop it. No tempting treats will consistently overwhelm the desire for the flowing hot water. No behavior management strategy has worked to solve this dilemma. So, we have resorted to a home modification solution.
A panel has been installed in the wall of the bathroom used by V, that allows a caregiver to shut off the hot or cold water supply to the tub, or both hot and cold, by turning a valve. It can not be reached from inside the tub. For the first time in years, we don't have to go shut the hot water off at the hot water heater on the other side of the house. There is no need to leave V alone in the bathroom to interrupt the hot water flow. Now, only the water flow to the tub is interrupted, instead of shutting off the hot water supply to the whole house and interfering with the dishwasher or laundry as before. We used the new system last night for the first time. The caregiver said, "It's the best thing since sliced bread!"
I am thrilled to have a solution to this previously unsolvable problem. I am posting a photo of this panel for anyone who shares this problem. For additional information about how to to this, contact me and I will put you in touch with the gentleman who did the work. Anyone with plumbing experience could do this.