Dr. Bill (wmbolman@gmail.com)
BLOG (weblog) #1
WHY DID I START THIS BLOG? One of the things that bothers me the most about the autism spectrum community (Autism, PDD, Asperger's and various neurodevelopmental conditions with autistic symptom) in Hawaii is that we have a very low sense of togetherness - it’s the result of the way that autism affects us – there are infants, toddlers, preschoolers, school-age, junior-middle-senior high youth, young adults. There are different symptoms (social unawareness, sensory differences, stimming, obsessions, anxiety, tantrums, odd interests, sleep problems), different professionals and different ideas about what causes autism spectrum disorders (ASD) and how they should be treated. So it’s no surprise if we often feel isolated, stressed and powerless.
WE NEED TO CHANGE THIS. Otherwise we have no political or community awareness as we deal with state services (DOE, DOH, DSSH) and community organizations. We pride ourselves on Ohana, “It takes many hands to pull in the nets”, but we are so caught up in our own problems and those of the few families we know who have similar issues, that we don’t have time and forget about the larger, outside the family ‘system issues’ that need group cohesion and social pressure to change. Examples are we have no office, no staff, no money, etc. except for the heroic work of the Autism Society of Hawaii, Naomi Grossman, Evelyn Akamine, and others.
SO, since we do not have an office or staff or other mechanism to get us together, I’m hoping we can make this “Autismspectrumhawaii.blogspot.com” into a virtual office. There are a lot of smart people among us who have ideas about what needs doing and (perhaps) how to do it. There are so many things to do that it looks a bit overwhelming, but we’ve got no choice. As a single example of why we need to do this, if we take the current CDC estimate of ASD = 1 in 150 and multiply this by the number of children & youth 0-18 in the last census, we get an ASD figure of 1,500. That means there are a huge number of people out there who may need information/support/etc.
I do not know at this time what will the best way to organize this blog, so we will have to adapt as we go along. I’m going to ask various professionals and parents I know to add their own comments, people like Jessie Mitchell, Sheila Kaimuloa and Dr. Peg Murphy-Hazzard. It will be important to identify professionals who like and are skilled at working with ASD issues. For example, I’ve heard that the number of Board Certified Behavior Analysts has increased greatly from less than a dozen to over 2 dozen! There are a number of service providers, groups like Alakai na Keiki, CARE, TIFFE and the day program providers for youth as they leave high school and go into a community that is not well prepared for them.
I don’t think we will be able to do much that involves money at this time, given the international and local recession, but we could certainly get our act(s) together for when the recession lifts and we know what is needed.
But above all it would be good to hear from everybody so we get a growing information base to build on. Therefore, please start sending in your ideas, comments, critiques, gripes, whatever and we’ll all work together at creating an Autism Spectrum community. Dr. Bill
In my experience's so far, I'm finding that the autism community here in Hawaii is fragmented BUT it's starting to come together. The problem seems to initiate from mistrust and uncertainty because not too much is known on treating this fast growing "epidemic". Sadly, this tends to leave parents having to second guess everything and everyone. Parent's want what's best for their child and to scrutinize everything may be "survival mode" because therapies aren't covered by insurance so parent's need to be wise on choosing the proper treatments their child needs. If they can't afford it and know that their child really needs it then their hands are tied. It's criminal that so many children don't get the therapy they need, it seems almost criminal to me because they end up being victims of the system. When other parent's try to do something proactive to help drive change, they are also scrutinized and judged vs. offering to help w/a solution. Many times when a child receives an autism diagnosis, they can be very isolated because they are stuck at home due to their child behaviors or don't know how to answer questions from other parents and children when asked "why doesn't he talk yet?" "What's wrong w/him?" Families even become isolated from their own relatives because it's an uncomfortable situation because they don't know how to help.
ReplyDeleteI always felt that we need to support one another for the best interest of our kids and their future. We should unite and be one strong voice vs. back biting or fighting.
We need each other, we can't do it alone. The numbers are growing and imagine 18 years from now, 1 in 150 or 1 in 94 boys will be life among us (actually, the world may actually be a better place : ) We cannot expect others to solve our problems, how can they possibly when they aren't living it? We need to be change agents and accountable not only to our own but to also helping the cause. Our next generation has real hope and we all have the opportunity to make this happen by giving back. Whether it be through prayers, volunteer work, helping a newbie or even giving a couple million you might have laying around to help open up a Center for ASD. I'm sure if everyone who would like to see this dream happen, there would be someone who could write grants or manage a center, coordinate fundraisers, researchers, therapist as well as all else it would take to get this going. Now may be the most opportune time to purchase some land somewhere. Thoughts??
You are so right with the comment about families not having the money or funds to treat the children correctly. The medical costs insurance does not cover is just as bad as trying to find the right doctor who will be able to treat your child here in Hawaii. The food is expensive and the infighting on what works and seeing so many families not really getting anywhere because the lack of understanding and commitment of diet along with everything else. We are all alone in the struggle because no one group confronts the situation as a whole. We need a yearly conference where all our families can come together to listen, learn, and make recovery happen for all those who want help and need help. We cannot wait for our Government to help us as they let this happen. We need to stop it here and help the children as quickly as possible. MMR, DTP, too many vaccines are hurting us all.
ReplyDeleteI've never felt Hawaii was that isolated until my child was diagnosed. Then you truly feel like you're living in the middle of the Pacific far away from the Mainland USA which has more to offer our kids. We don't have as many private school options here. We don't have as many SLPs, OTs, PTs, BCBAs, etc. We don't have as many health food stores that are readily available to all. We're far from renowed DAN doctors/clinics (I know we finally have a DAN MD here in Hawaii who is treating patients and I'm so thankful for that).
ReplyDeleteThere have been many times that my spouse and I have thought about moving to the Mainland, to a large state like California, with more programs and more professionals than what we currently have here. And I say that as someone who is local.
I have my issues with the DOE system. I would love to see a private school here for kids with learning issues (ADD/ADHD, dyslexia, HFA, NVLD, etc.) We have maybe one or two such schools but we could certainly use more. We need more options for schools.
as parents of kids of special needs, we are all fighting the same battles, with insurance, DOE, isolation, costs of living/expenses. this is the time for us to get together and discuss our issues with one another so that we don't feel so alone. we really need to help each other especially in times like these. we cant rely on government these days because sadly, they seem to have more problems than we do. as part of the private sector, we should pool our resources but first we need to get ourselves together and organized.
ReplyDeletethere are several organizations that have recently popped up, except for the autism society, in the last 2-4 years. thats progress! some of them are the following:
TACA is a great resource for parents to get together to learn and discuss various issues that we may encounter or experience such as biomedical treatments, educational programs, DOE challenges, etc. you meet lots of other parents who have "been there, done that". i found this organization to be very caring and dedicated in really helping every parent that comes through the door.
there are other groups such as the autism society that gets together to discuss timely issues. lots of times discussions are more DOE related such as IEP's, the law, related services and also legislative issues that may affect how the DOE implements/shapes our educational programs. lots of free advice that may come in handy especially for your next iep meeting or due process case.
the beautiful son foundation is also dedicated to assisting families with autism as well as bringing new discoveries to our islands related in treating autism.
Dr. Lisa Camerino is currently hawaii's DAN doctor. she is a no nonsense md who does this part time because she also has an autistic child to take care of and a full time job. she is acutely aware of how costs of treatments can adversely affect the progress of our children and she actively seeks to assist all parents in having labs and drugs covered by insurance. her fees are extremely affordable compared to someone like dr neubrander who charges 2500 to 3500 dollars in an initial consulation. if your priority is truly following a DAN protocol and getting your child on the road to mainstreaming, then you should consider seeing this MD. its a choice that all parents must decide and make on their own for their families and their child.
there is an Alternative Learning school for younger kids from 3-5 years old supervised and run by dr. jennifer dustow. she has a phd in education and she also privately consults on DOE or private education/related services needs and programs. she is also a no-nonsense person who can pretty much get you, and your child onto the right track. thats what most parents need anyway.
there are also many state programs such as Hawaii Disability Rights Center that has advocates as well as attorneys who can help you in your legal battles. SPED lawyers are few and far between, however most parents know these attorneys fairly well. many parents are familiar with due process, the procedure, and the attorneys. you can find help from any of the above organizations.
unfortunately,the privacy laws actively prevent us parents from meeting each other even if our kids are in the same school. the DOE would prefer it that way anyway. since we are so spread out over the various schools around the islands, it is extremly difficult for us to meet. i encourage all parents to seek assistance from any of the organizations above (but not limited to these) and introduce yourself. yes, money is an issue and a roadblock but it will always be an issue and a roadblock. we need people in NUMBERS so that we can have not only a VOICE but a LOUD VOICE in whatever we need done.
my personal belief is that perhaps one day soon, we will be able to bring about another Felix so that the DOE can stop blaming special needs kids for sucking up all of their money! an audit must be done. we will need a VERY LOUD VOICE for this!!!
i agree with dr bolman in that we need to get acts together. perhaps this blogspot can serve as a first step towards becoming a more
cohesive unit.
lastly, this is a disclaimer regarding the above organizations. i am a parent who has had positive experiences with those organizations and individuals i've listed above. the descriptions are just my opinion based on my personal knowledge and interactions with them. i have found them to be extremly informative and supportive. my comments are not intended to help these organizations for membership, etc., only to let others out there know that there is help available.
best wishes,
teresa
Aloha ~ I am a BCBA residing on Maui. I work for an organization that serves children and adults with special needs including those with diagnoses on the autism spectrum. As services for this population continue to dwindle, due to government cutbacks, it is concerning, to me, as to how these life altering services can continue. For me, parent education is a top priority. After my son’s head injury in 1985, I formed a support group. We met in my home and started supporting each other. Out of this came lifelong friendships and changes in school systems. What began as unorganized chaos changed laws in Florida. I moved to Hawaii to bring my son to a healthier climate, and to help clients on Maui with the tools of behavior analysis. I understand that the myriad of methodologies thrown at parents of children on the spectrum is mindboggling. The cost of treatment is an unreal expectation for the average family. The question is, how can we, as a society, pull together and make treatment a reality for all individuals, regardless of diagnosis, have a real chance of attaining the most of what they can become.
ReplyDeleteAs I am seeing it, the DOE is not able to do the job of educating our EI child who has autism. Dr. Partington has been brought on board to train the DOE staff on ABLLS and Verbal Behavior. Over the course of 3 days he repeatedly stressed a very important point, that our kids cannot wait a week or a day without moving a program along. Time is of essence because the longer it's delayed the further behind they fall = more catching up to do. In our experience, we are finding that it's impossible for the DOE to do this task because it takes time to meet for an IEP, then find the people to carry it out etc. It's a dilemma because we like our school, the teachers are great and they are all very well meaning in their efforts. They have the responsibility of other students to oversee so it's a challenge for them as well. Autism is a complex disorder which does not yet have defined answers to the etiology, treatments or therapies. What are the solutions?
ReplyDelete?DP? Will that bring a solution in these economic times?
In the 'Verbal Behavior Approach" Book page 163.
"Dr. Glen Dunlap told the author to treat her child's autism like it was the most severe case. He said that in his long experience he'd seen children who were three years old and similar to Lucas (authors son) who did turn out normal by the time they were eight years old--and others who didn't. Likewise, he's seen severely autistic children for whom he had little hope of any recovery become indistinguishable from typical children by the time they were eight. Dr. Dunlap told her that he had seen the mild to moderate kids fall behind the severe kids because they didn't get the intensive therapy they so desperately needed."
This information is coming from the top experts w/many years of experience working w/children w/autism. This is a valid point that needs to be one of the driving forces behind our approach of chosen methodologies.
Hi,
ReplyDeleteFist of all, I'd like to thank Dr.Bolman for taking the time to build this Blog Site.
I do believe, however, that we need a little more complex Blog Site to make our communication with each other more effective:
i.e.--forums on different topics, forums on concerns with different age groups.
Building this complex blogsite could use the help of someone "out there" who has the expertise and time to do this. Can anyone "out there" help Dr.Bolman with this?
I , also, have a few questions:
1) Is there anyone on the BOE that is an advocate for kids on the Autism Spectrum?
2) Are there any charter schools in Hawaii that
cater to kids who have learning disabilities?
3)Is there any high school in Hawaii, private or public, that serves the needs of students on the Autism Spectrum?
4)Is there any type of Transitional Independent
Training Residential Program that can help young adults on the Autism Spectrum learn to live on their own--sponsored by public or private sectors (i.e. churches).
5)These are some numbers for the Autism Spectrum cases in Hawaii--do you believe these numbers are accurate?
http://www.easterseals.com/site/PageServer?pagename=ntlc8_autism_state_profiles_hawaii
I have these questions, because I truly don't know.
Thank you for your time.
Mae Okawa
Mother of Autism Spectrum Son
Just saw this on the Internet:
ReplyDeletePAC RIM CONFERENCE in HAWAII:
http://www.pacrim.hawaii.edu/pacriminfo/pacrim2009/topics/view/topic01.php