Real Feelings

It occurred to me that someone reading this might think that I am always hopeful and optimistic about V, our life and her future. Most of the time I just think that I wouldn't make anyone's life any easier by whining about the way that I hoped or wished things would be or should be. Most of the time I accept and live in the reality of our situation, counting my blessings and recognizing that it is hard to raise a child without any disabilities too, just in a different way. I have not had that pleasure myself, and I tried to share in it vicariously by teaching elementary school for a few years. It's not the same. Those children move on with their lives and most forget you were ever a part of their day to day routines (I think).
Like other parents who are told that their child is not developing normally, I got scared and sad, and grieved for the lost path that I thought we were going to take. I left the world of "This is what happens next in your child's development" and joined the world of "Who knows what will happen next, or when it will happen". I might as well have thrown away the child development book that I studied in college that explained what is typical at 2 years, 3 years, etc. There was no book and no person who could provide answers to questions like, "When will she talk?" "When will she learn to dress herself?" and "When will she read?" My only option was to love her, give her what help I could, and wait to see what would happen. Over time I learned to be her voice and to advocate for her with teachers, therapists and doctors. Sometimes I became really angry and frustrated with them all.
I tried to join a parent support group when V was very young, but came home from each meeting with a headache from the stress I experienced in those meetings. They were years ahead of us in their experiences and I could not relate to the things they were dealing with, but it frightened me that I might someday be able to. So, at that point, I determined that our lives were not going to revolve around V's disability. We were going to have lives that were as normal as possible, and I would do what I needed to do, but not immerse myself in the subject of what was wrong or missing in our lives. That was how I functioned without becoming overwhelmed by how different our lives were becoming from that of my friends. It was lonely and isolating being the only person I knew who was dealing with our particular kinds of troubles. As a single mother, I had no partner to share the ups and downs with. When V was very little, she was included in birthday parties that my friends with normal children held, but as she grew the invitations stopped coming. There were no invitations to come play and no little friends coming over to play with V, just the two of us at home. The children of my friends had grown and moved on to socialize with other children at their own developmental level. V was left behind, and me along with her. I continued to get together with other adults on my own when V spent the weekend with her dad, or I had a sitter, but the strong chance that V would have a meltdown and become aggressive or destructive, kept her from being part of those activities. Peers, outside of school, were non-existent. I could not imagine what it would be like to grow up without friends the way that she had to. I have always recognized that no matter how hard it has been for me to care for her at times, it has always been harder to live in her head 24/7/365. At least I got breaks to live a normal life, to escape stress and frustration. There have been times I have thought that if I had a chance to trade places with her, to give her a chance to live in a body that works as it should while I exist in the one that she has to, I would gladly make that trade so that she could have a chance to have friends, boyfriends, an education, a husband, children, a job, grandchildren, travel, sports....everything she has to miss out on because her body won't do what it was supposed to. I have stared into her eyes, looking for the loving, intelligent soul that I believe is trapped inside and I have wondered if we will finally get to have a real conversation when we get to heaven. I hope so. It would be tragic to never have that chance. I love her and I get to say it every day. She loves me, but never gets to tell me so, so she gives me smiles, hugs and kisses instead.
I try to keep an emotional distance from what we have both lost so that I can hold myself together enough to act on her behalf. If I talk about it too much, my throat gets tight and my body trembles like I am cold and need a sweater.
I try to be okay with the life that V has, but that doesn't mean that I don't miss what it should have been. I should have been sitting at her high school and college graduation while she walked proudly across the stage for her diploma (not certificate), and I should have been taking her prom and homecoming pictures after helping her shop for a dress. I should have congratulated her on her first job and I should be looking forward to her wedding and her children. It's not fair and we have both been robbed of what should have been.
So, if you read my posts and think that you are alone feeling sad, isolated, angry, helpless or frustrated, you are not alone at all. I choose to focus on those things that I can control to maintain my own mental health and to be the best mom I can be, and I look away from all those negative feelings most of the time. But only MOST of the time.

Fitness For Health

In Rockville, Maryland, there is a fitness center unlike any I have seen or heard of. This is a place that has staff who have experience working with the special needs population and have worked collaboratively with special education teachers and occupational therapists.
Nyle, V's OT, and I visited this place today, to determine if it would be an appropriate place to work on her gross motor skills, balance, posture and motor planning. They are equipped to do these things and much more. Marc Sickel, founder of Fitness for Health, showed us around and discussed the philosophy of the program. Nyle thought it was the most state-of-the-art facility that she had seen, and better equipped than any occupational therapy clinic.
An article by Jessica Clancy that is included in the client packet we were given says this place is "customizing programs for kids who are all over the spectrum when it comes to motor skills and cognitive development." She goes on to say that clients with ADD, autism, and an array of genetic disorders have been helped here. Non-disabled clients are served here as well because the facility and staff make fitness and learning fun. Some of these kids participate in "learning through movement" to address academic skills as part of a fitness/play activity.
We will take V to see this facility in the next week or two and see how she responds to the environment and the instructor.
It is a very impressive place.
To read more about this and watch news video clips showing the facility, visit the website at FitnessforHealth.org

Keeping Up With Research

One of the ways that I keep myself informed about what is going on in the medical research that could someday help V, is through Google Alerts. Every day I get a Google Alert email that summarizes every article that mentions research related to ASD's. Today, one of the articles looks promising. I will look into it further. I have copied the text and will paste it here:

Public release date: 8-Apr-2010
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Contact: Cody Mooneyhan
301-634-7104
Federation of American Societies for Experimental Biology
New study of autism reveals a 'DNA tag' (methylation) amenable to treatment
Research in the FASEB Journal describes discrete epigenetic changes of DNA in a certain subgroup of twins and siblings with autism

A new discovery raises hope that autism may be more easily diagnosed and that its effects may be more reversible than previously thought. In a new study appearing online in The FASEB Journal (http://www.fasebj.org), scientists have identified a way to detect the disorder using blood and have discovered that drugs which affect the methylation state ("DNA tagging") of genes could reverse autism's effects. This type of drug is already being used in some cancer treatments.

"As the mother of a now 22-year-old son with an autism spectrum disorder, I hope that our studies as well as those of others, will lead to therapies that are designed to address specific deficiencies that are caused by autism, thus improving the lives of affected individuals," said Valerie W. Hu, Ph.D., one of the researchers involved in the work from the Department of Biochemistry and Molecular Biology at The George Washington University Medical Center in Washington, D.C. "Since autism is very diverse in the array of symptoms present in any given individual, it is first necessary to be able to identify specific deficits in each individual in order to design and then prescribe the best treatment. As an example of this personalized approach to medicine, we identified RORA as one of the genes that was altered specifically in the sub group of autistic individuals who exhibited severe language deficits."

To make their discovery, Hu and colleagues identified chemical changes in DNA taken from cells of identical twins and sibling pairs, in which only one of the twins or siblings was diagnosed with autism. The researchers then compared genes that showed changes in DNA tagging (methylation) with a list of genes that showed different levels of expression from these same individuals. Then the scientists studied the amount of protein product produced by two genes that appear on both lists in autistic and control regions of the cerebellum and frontal cortex of the brain. They found that both proteins, as predicted by the observed increase in DNA tagging, were reduced in the autistic brain. This suggests that blocking the chemical tagging of these genes may reverse symptoms of the disorder and demonstrates the feasibility of using more easily accessible cells from blood (or other non-brain tissues) for diagnostic screening.

"For far too long, autism research has been side-tracked by the cranky notion that it's caused by the MMR vaccine," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "Studies like this, which define genetic and epigenetic changes in discrete subgroups of the autism spectrum, offer real hope that effective treatments and accurate diagnosis are closer at hand."

###

Receive monthly highlights from The FASEB Journal by e-mail. Sign up at http://www.faseb.org/fjupdate.aspx. The FASEB Journal (http://www.fasebj.org) is published by the Federation of the American Societies for Experimental Biology (FASEB). The journal has been recognized by the Special Libraries Association as one of the top 100 most influential biomedical journals of the past century and is the most cited biology journal worldwide according to the Institute for Scientific Information.

FASEB comprises 23 societies with more than 90,000 members, making it the largest coalition of biomedical research associations in the United States. FASEB enhances the ability of scientists and engineers to improve—through their research—the health, well-being and productivity of all people. FASEB's mission is to advance health and welfare by promoting progress and education in biological and biomedical sciences through service to our member societies and collaborative advocacy.

Details: AnhThu Nguyen, Tibor A. Rauch, Gerd P. Pfeifer, and Valerie W. Hu. Global methylation profiling of lymphoblastoid cell lines reveals epigenetic contributions to autism spectrum disorders and a novel autism candidate gene, RORA, whose protein product is reduced in autistic brain. FASEB J. doi:10.1096/fj.10-154484 ; http://www.fasebj.org/cgi/content/abstract/fj.10-154484v1 "

So, this is just one of the 5 or more articles that come to me in an email alert each day. There are lots of studies that are being conducted every day and it makes me hopeful that at least one of these will yield some results that will help my daughter. It takes time to keep up by reading these articles each day, but don't depend on your doctors to keep up with all that is going on in research. Even the therapists that work with V, wonderful as they are, tell me that they should keep up with the latest research but aren't able to because their lives are so busy. The advantage of reading up on this yourself is that you can bring the interesting issues to the attention of those who treat you or your child or your client and see if they can find out more about it.

For Autism Awareness Week

This week there is a lot of media focus on the topic of Autism. It is a good time to learn about more resources out there than you may have known about before.
For Wrightslaw Yellow Pages for kids with disabilities, copy and paste this URL :
http://www.yellowpagesforkids.com
They list advertised services, state by state, so this can help you find the service you are looking for, where ever you are in the United States.
If you have (or are) a teen or young adult with an ASD, and work is a concern, copy and paste this URL:
http://www.jobs4autism.com
This website has the input of people on the autism spectrum who have found jobs and what their experiences have been. Some parents post as well.
Have you ever wondered if you (or your child) would benefit from a service dog? Well, there is a story about a family with an autistic child that had an elopement problem, who was helped. To read about it, copy and paste this URL:
http://www.cnn.com/2010/HEALTH/04/02/autism.service.dogs/index.html?hpt=Sbin
While our dog is not a "service dog", we did get her as a puppy with the thought that she could help us to provide a companion to V, who was not an authority figure and who could comfort her at night if she woke up and felt lonely. She has performed those jobs well, and does not react to sudden or loud movements by V since she was introduced to her at a very young age.

Deciding on the Best Way to Allocate Funds

Twice a year I have to think hard about this issue. Once, as the deadline approaches for the final budget modification, which must be submitted to DDA by the end of the 3rd quarter of the fiscal year, which is the end of March. The second time is when the annual update to the plan of care and budget has to be written.
I review how much of the budget has been spent for each item in the plan and how each of the items in the plan are benefiting V overall, compared the the time spent and the cost.
This year I am struggling with the issue of communication needs vs. physical needs. V is really making excellent progress with the speech therapy, which she receives one hour a week, and recently twice a week. The allocations for expenditures to meet her physical needs are not working out as well. The therapeutic riding lessons keep getting canceled because of various issues, and she is not receiving the benefit of nearly as many lessons in a year as I anticipated she would. So, I need to re-allocate that money to something else. In addition, the difficulties I have had finding and keeping someone to be an adapted aquatics instructor means that those funds have not been benefiting V either, and I need to get the position filled, or change the plan to re-allocate those funds as well. So, I am trying to decide if I should redirect the money to more speech therapy, since it is working so well, or to try to find another way to meet the need she has for improved balance, posture, and gross motor skills. The DDA restrictions on expenditures related to physical fitness make it more difficult to find alternatives to meet those needs for V. I have to make some decisions, justify those decisions in writing, work the numbers out, and do it soon. I shouldn't feel so much pressure to get it exactly right, as I can always submit a plan or budget modification later if I want to change things. Still, I take my responsibility to get this plan as close to meeting all of V's needs as I can very seriously. I should have a talk with the therapists and get some informed input to help me make my decision.

Services Not Covered Under New Directions

I attended a meeting for Support Brokers earlier this week to be fully informed as we approach the deadline for Annual Plan and Budget Updates for the new fiscal year.
Support Brokers were informed that DDA will be strictly enforcing the rules regarding services and supports that are not typically allowable under New Directions.
Some of the items on that list puzzle me.
Admission cost for staff to attend activities in the community with the disabled individual that they support is on the list. When a disabled individual has a monthly income of less than $700.00 from SSI, and no other source of financial support, it doesn't seem reasonable to expect that they can pay the admission cost for support staff to accompany them to the places that they want or need to go. Yet, without the support staff, V can not go anywhere. The staff transport her, speak for her, guide her and keep her safe. The community would be out of reach for V without the support of her staff. Some places allow support staff to enter for free, while charging admission only for V (which we pay for her). Other places, like the small private zoos that she enjoys walking in, will not allow free admission for support staff, so we buy season passes to keep the cost down, covering the cost for V, but receiving reimbursement for the cost of staff passes.
Included on the list of services not allowed are memberships to fitness centers, personal trainers, and nutritionists. All of these support the health of disabled people in a proactive way and prevent the health problems associated with obesity and inactivity. Cognitive and physical disabilities require specialized guidance to maintain a healthy level of physical activity. We do not use a nutritionist, but have used a fitness center to provide access to a pool year round for adapted aquatics, and V does require someone with certain expertise to support her physical fitness needs. Again, when a disabled individual receives only about $8,000 a year in income from SSI, and their family is already picking up the cost of housing, utilities, clothing, entertainment, medical copays, and food that the income can not possibly cover, how can they afford to pay for these services that support good health. If there are sufficient funds in the budget, why are these kind of supports not allowed?
Staff recruitment is now on the list of items not allowed. Since a Craigslist advertisement is $25.00, and a newspaper ad is $100.00 or more, if support staff are necessary, why could this necessary action to find staff not be covered? Agencies run advertisements in the local Gazette. I have seen the ads. I am sure that they pay for these ads from the state funds that they receive.
Maid service is not covered. I know for a fact that at least some group homes are professionally cleaned. Parents don't typically clean the living space of their adult children, and someone with a severe physical or cognitive impairment can not necessarily be expected to be able to do this for themselves. We have never used this service, but I still don't understand why it would be disallowed.
The last two examples seem to set a different standard for agencies vs those participants in New Directions, unless agencies are using funds that are not received from the state to pay for advertising and cleaning services for their offices and group homes. Do they pay for these things out of private donations? New Directions participants don't have the means to have fund-raising events the way agencies do. Whatever New Directions disallows for participants must come out of the pockets of family members.
To be fair, the list does state that consideration will be given on an individual basis if the service or support is justified as relating to the individual's disability and is habilitative in nature.

Aromatherapy to Treat Behavioral Issues?

Recently, I came across an article suggesting that certain essential oils may have an impact on certain behavioral issues that are commonly associated with ASD's. This is an excerpt from that article:

" Essential Oils and Autism

Essential oils can be effective in reducing some of the emotional and behavioral aspects of autism. Make essential oils a part of the daily routine to help keep everything balanced, calm and happy. Here are some examples:

* Peppermint essential oil is a neuro-stimulator, and helps with concentration. Use it in an aromatherapy diffuser or on cotton pads around the room.
* Neroli essential oil is known to be a very calming oil and is recommended for obsessive behaviors. Neroli is distilled from the flowers of the bitter orange tree and has a wonder full aroma. It can be added to a cream as a moisturizer, or as a perfume, but having it around will help with the obsessions.
* Roman chamomile essential oil has a calming effect and works well with hypersensitivity and aggression. It is particularly useful with in preventing tantrums and in easing transitions. Use in the bath or shower, inhale on a cotton ball or add to an aromatherapy diffuser.
* Sandalwood essential oil is another oil that can be used for obsessive and aggressive behaviors but it is also known for helping with emotional traumas. Use in an aromatherapy diffuser, bath or shower, or in a massage if tolerated. For people who are tactile defensive, add the essential oil to a cream and suggest they massage it into their own hands.


Read more at Suite101: Aromatherapy and Autism: Using Essential Oils to Reduce Symptoms of Autism http://autism-therapy.suite101.com/article.cfm/aromatherapy-and-autism#ixzz0iM4uSzoJ "

Has anyone tried this strategy and had any success with it? It seems harmless enough to try, and relatively inexpensive. I am thinking of giving it a shot and will write about any outcomes later.