Sunday, November 13, 2011

Clip Art

Resist from repeating yourself.
Margo advised parents to only say things once (to their children) in her lecture on: Sensory Rich Environments to Support Learning for Young Children: Simplifying yet Enriching Day to Day Experiences in Home and Care Programs.
We also talked about how day-to-day demands on our children with SPD can become overwhelming. Using visual aids is very helpful. here are some websites to get you started.

http://office.microsoft.com/en-us/images/

http://www.visualaidsforlearning.com/

When John was younger, I printed and laminated pictures of his daily activities, glued the rough side of velcro on the back of the pictures and placed them on a felt board every morning.The pictures made each activity real....if it was on the board, it needed to be done and John didn't question this. As we went through each activity, John removed the pictures and put them back in a designated box. The process was very empowering. It worked out really well for us.

We don't do daily chart boards anymore, but we still have a weekly chart; much less sophisticated, but for the whole family. I prepare it on Sunday, print it and hang it up for the week. Meals are a breeze too. We get together and each pick a meal and create a visual chart of what we're eating each day. When the question, "what are we having for supper?" arises, I just direct the children to the meal chart. Again, although the children are older (11, 8 and 5 years old), nobody questions the chart. It's the LAW.

Happy Charting!

Saturday, November 5, 2011

Sensory Rich Environments to Support Learning for Young Children

Society for Healthy Sensory Processing Development welcomed Margo Running as speaker to its first presentation. She spoke about creating sensory rich environments to support learning for young children leaving the audience with an understanding that the development and protection of our child’s senses form the foundation for learning. If a child doesn’t properly develop the sensory systems, the child won’t have a solid base for their academic learning. Too often, our children are rushed into academic learning.
As we rushed the kids out of the house this morning, I remembered Margo Running stressing the importance of the “pause”. It isn’t easy, but especially with our children with SPD issues, let’s remember that rushing will just cause frustration and unhappiness; their brains just don’t work that fast….it’s like asking a cat to bark. It’s not going to happen. Pause.

That was yesturday. I would like to admit that I actually took a pause, but life is busy. And I have so much to do… I won’t be able to write everything I’d like to about Margo’s talk. But that’s okay because we’ll invite her again and those of you who missed her will get other chances to hear her. Those of you who attended the talk last week, thank you for coming and for your generous donations!

Wednesday, July 20, 2011

Letter to National Autism Center

Here is a copy of the letter sent to the National Autism Center in the US from the Paediatric OT Council of BC. The letter was written by the OT council of BC after they were notified of my blog on "Science: Failing our Children" written on May 21st. If you would like the complete letter, with references attached, please let me know: dmastromatteo@shaw.ca



Dear Colleagues,

Re: National Autism Center’s National Standards Report – the facts behind the ‘science’ from an occupational therapy perspective

The Paediatric OT Council of BC (POTC) represents occupational therapists working with children and youth throughout British Columbia. We are the members of the POTC Autism Advisory Committee and, as such, advise on issues relevant to occupational therapists working with children with autism spectrum disorder (ASD) in the province.

We received an email message recently from a mother of a child with autism who attended a presentation given by Dr. Glen Davies of the Able Developmental Clinic in Vancouver. Dr. Davies summarized the findings of the NAC’s National Standards Report on evidence-based interventions for ASD and also commented on occupational therapy and sensory integration. Please refer to the mother’s comprehensive and informative blog link for more information: http://sensationalchildren.blogspot.com. Consequently, we reviewed the 2009 National Standards Report (NSR) released by the National Autism Center (NAC) and believe the conclusion regarding sensory integration misrepresents existing research, which clearly validates sensory-based interventions.

We would like to comment on the following NSR conclusion:
“Sensory integration is an unestablished treatment for which there is little or no evidence in the scientific literature that allows us to draw firm conclusions about the effectiveness of the intervention with individuals with ASD. There is no reason to assume this treatment is effective. Further, there is no way to rule out the possibility this treatment is ineffective or harmful”.

Reports, comments or opinions about occupational therapy interventions by other professionals present a professional dilemma for occupational therapists who “Strive to provide evidence-based, family-centred practice…. and feel conflicted when they observe improved quality of life for children and their families after an intervention yet are unable to offer definitive research to support their practice”(Parham 2007). Ethical communication between professions would dictate that if one profession has concerns about another, these concerns are best managed at their respective regulatory college levels. To our knowledge, there were no attempts by the National Autism Center to clarify their concerns regarding the efficacy of occupational therapy treatments for children with Autism prior to dissemination of the National Standards Report.

We would like to take this opportunity to provide information regarding the extensive research which supports occupational therapy interventions for children with Autism.

Sensory integration research goes back to the 1960’s and prior to publication of the NSR (2009) several retrospective studies had already concluded the outcomes of sensory integration intervention were inconclusive (Daems 1994, Miller 2003). Occupational therapy ‘experts’ in sensory integration theory and practice were concerned that these findings did not support the clinical evidence and determined to figure out why. They reviewed the methodological challenges, selection of outcome measures and whether the interventions were implemented according to the fundamental underlying principles of sensory integration.

The paper “Fidelity in Sensory Integration Intervention Research” published in 2007 provided some useful insights into the underlying problems with the earlier evidence used to measure the effectiveness of sensory integration intervention. The researchers specifically addressed the issue of ‘fidelity’ and identified core treatment components that comprise the intervention. They then reviewed 70 early papers purported to demonstrate the use of sensory integration, in the light of this new information. Analysis determined that only one intervention met the ‘fidelity requirements’ of being sensory integration intervention and 69 studies were discarded. The paper concluded with a warning – “Researchers should carefully consider the extent to which interventions demonstrate fidelity when identifying studies to include in reviews of sensory integration outcomes and when making inferences regarding the effectiveness of this intervention” (Parham 2007).

When trying to make sense of the evidence about health and health care with regard to what treatments help children with autism, it is important to be mindful of the following:
• Truth and values: who carries out, funds and benefits from the research?
• Defining the research problem: What is the problem? How can it be defined differently and would that produce different answers? Who benefits from this definition and who loses?
• What counts: Do we use numbers or stories? Which numbers? Whose stories? Do we ask why or how? Or simply how much? What information is missing?
• Authority and credibility: Who are the ‘experts’ in the research? Who or what organization has produced the evidence? What interests or influences may affect how this evidence is produced or shared?
• Does the evidence really matter? How does the evidence inform health care decisions and health policy? Are there other factors at work? Does the evidence address the needs of particular families and the circumstances of their lives?” (Canadian Women’s Health Network 2005)

Occupational therapists in their review of the NSR uncovered some fundamental problems with regard to the way evidence about sensory integration intervention was gathered and evaluated by the NAC. First, the NAC neglected to include any occupational therapists on their team of over 160 ‘experts’ from diverse professions. Then, in their literature search they neglected to include the paper on the fidelity in sensory integration research although it occurred within their search time line. Without OT consultation and inclusion of the fidelity study, the NAC team of ‘experts’ drew their conclusion based on 7 intervention studies none of which meet the ‘fidelity requirements’ for being sensory integration intervention. Further, the appropriate supplementary information that might assist readers in their decision making regarding this treatment was not provided (Appendix one). In other words, the NAC reviewers made the very error Parham and her colleagues warned about. This lack of concern by an international organization for professional consultation and accurate scientific reporting is astonishing and the published conclusion misleading.

These facts undermine the credibility of the NSR, the authority of the NAC and raise questions about truth and values and who benefits from this research review? The report appears to be extremely comprehensive and thorough but the final conclusions represent a rather narrow view on effective, evidence-based autism interventions which do not address the wide range of symptoms present in the disorder. The report also implies ‘authority’ which allows other professionals to comment on treatment interventions about which they may actually know very little. What is most alarming is that the report will likely be used to guide funding for autism through insurance companies and government agencies. Finally, professionals and parents of children with ASD will assume that all conclusions formulated by the NAC are accurate and truthful.

It is apparent that occupational therapy and sensory integration intervention are obviously not well understood by other professionals as they are frequently presented as being one and the same. They are not. Sensory integration intervention is only one of many treatment methods which occupational therapists use to guide clinical reasoning and meet the individual needs of a person who has autism. It is like Hanen is to an SLP, Cognitive Behaviour Therapy (CBT) is to a psychologist or Applied Behavioural Analysis (ABA) is to a behaviour consultant or interventionist. Occupational therapists are unique in their ability to analyze activity and behaviour from many different constructs in order to determine barriers to performance and direct appropriate interventions. This makes OT’s important members of the diagnostic and intervention team. To imply that sensory integration is all occupational therapists do seriously negates the wealth and breadth of our professional role with the ASD population.

Individuals with autism present with a wide range of performance limitations that can be severe and persistent. They constitute a heterogeneous group where each person has a unique profile and they require access to a wide range of interventions to address these individual and unique limitations (Dionne 2011). Occupational therapists are one of the key professionals to provide services to these individuals with their knowledge of sensory processing, sensory-motor performance, social/behavioural performance, self care and participation in play (Case-Smith 2007). Parents and other professionals can be very confident that ‘evidence-based practice’ is a core value for the profession of occupational therapy and that occupational therapy is well aligned with the philosophical and conceptual basis of the interventions for ASD that have been researched and have demonstrated effectiveness (Case-Smith 2008, Arbesman 2009). Research in occupational therapy outcomes, as related specifically to ASD, is an emerging field with new papers being published regularly.

Uninformed opinions regarding the efficacy of occupational therapy with autism are being made with increasing frequency. Usually this occurs during discussion about interdisciplinary treatment approaches and results in the promotion of one treatment approach at the expense of occupational therapy. No other profession appears to be targeted in such a manner.

Occupational Therapists believe that ‘best practice’ in working with persons with ASD involves an interdisciplinary approach where each professional brings their expertise to the table to meet the needs identified by each and every family; where intervention is a collaborative effort based on the latest research evidence, clinical judgment and individual needs.

We urge our colleagues to contact a local occupational therapist who is reliably knowledgeable about the role of occupational therapy in the field of ASD. Current research information may be found in Appendix Two. Other resources include the Sensory Processing Disorder Foundation (http://www.spdfoundation.net or http:/www.spdcanda.org.)

We request that the National Autism Center consider an immediate retraction and amendment of the National Standards Report with regard to the Sensory Integrative Package and fulfill your stated aims by providing accurate supplementary information to assist readers in their decision-making regarding this treatment.

Respectfully,
POTC Autism Advisory Committee

Saturday, May 21, 2011

SCIENCE: FAILING OUR CHILDREN

By: Domenica Mastromatteo MSc, BEng, MOM

I attended a presentation on The National Standards Report conclusions from the National Autism Center’s exhaustive review of scientific evidence behind each type of treatment by Glen Davies, Ph.D., R.Psych. Director, ABLE Developmental Clinic. I was very excited to hear him talk, but left disappointed.

Dr. Davies is said to be the most respected child psychologist within the autism community, not only because of the work he performs directly with children, but also because of his efforts toward protecting their rights. He talked openly about the conclusions of the National Standards Report; I did not agree will much of his perspective.

The National Autism Center (nationalautismcenter.org) is a not-for-profit center for autism in the United States committed to evidence-based practice. NAC claims that (www.nationalautismcenter.org/nsp/) “As the number of children diagnosed with ASD continues to skyrocket, so do the number of treatment options. Families, educators, and service providers must sift through a massive amount of confusing and often conflicting information about the myriad treatments available. This reality makes treatment selection complicated. The best way to determine if a particular treatment is effective is to look at research that has been conducted.”

In September 2009 the NAC published their exhaustive review of the treatment literature for children with autism spectrum disorder. This review relied on the expertise of nearly 100 respected researchers in the field of autism, reviewed more than 7000 studies including over 1000 for detailed analysis.

According to the NAC (www.nationalautismcenter.org/nsp/), ”the primary goal of the National Standards Project is to provide critical information about which treatments have been shown to be effective for individuals with ASD. The project examined and quantified the level of research supporting interventions that target the core characteristics of ASD in children, adolescents, and young adults (below 22 years of age) on the autism spectrum. This groundbreaking report covers a broad range of applied treatments and identifies the level of scientific evidence available for each. It includes 775 research studies – the largest number of studies ever reviewed. For the first time, families can find specific information about the age groups, treatment targets, and diagnostic populations to which these treatments have been applied. The National Standards Report will serve as a single, authoritative source of guidance for parents, caregivers, educators, and service providers as they make informed treatment decisions. We are confident that these findings and recommendations will change lives and give hope and direction to people whose lives are touched by autism.”

(Feel free to skip the next few paragraphs summarizing the NSP and continue with my conclusions in the last 3 paragraphs.)

The National Standards Project rated studies on pre-established criteria of scientific merit and described the level of evidence for each of the common and not so common treatments for ASD, classifying them into the categories of: Established Treatments, Emerging Treatments and Unestablished Treatments. The following general guidelines were used to interpret each of the categories (visit www.nationalautismcenter.org/nsp/ for more information):

◖ Established. Sufficient evidence is available to confidently determine that a treatment produces beneficial treatment effects for individuals on the autism spectrum. That is, these treatments are established as effective.
◖ Emerging. Although one or more studies suggest that a treatment produces beneficial treatment effects for individuals with ASD, additional high quality studies must consistently show this outcome before we can draw firm conclusions about treatment effectiveness.
◖ Unestablished. There is little or no evidence to allow us to draw firm conclusions about treatment effectiveness with individuals with ASD. Additional research may show the treatment to be effective, ineffective, or harmful.
◖ Ineffective/Harmful. Sufficient evidence is available to determine that a treatment is ineffective or harmful for individuals on the autism spectrum.

There are many different skills or behaviors that are targeted for improvement when treating individuals on the autism spectrum. The following is a list of treatment targets used for the NSP. Some of the treatment targets seek to improve skills by increasing developmentally appropriate skills. Other treatment targets are intended to improve life functioning by decreasing behaviors. The 14 treatment targets were further separated into two categories: skills increased and behaviors decreased. (Visit www.nationalautismcenter.org/nsp/ for more information):

Skills Increased
◗ Academic.
◗ Communication.
◗ Higher Cognitive Functions.
◗ Interpersonal
◗ Learning Readiness
◗ Motor Skills.
◗ Personal Responsibility.
◗ Placement
◗ Play.
◗ Self-Regulation.

Behaviors Decreased
◗ General Symptoms
◗ Problem Behaviors.
◗ Restricted, Repetitive, Nonfunctional Patterns of Behavior, Interests, or Activ- ity (RRN): stereotypic and compulsive behaviors, inappropriate speech, or restricted interest,etc.
◗ Sensory or Emotional Regulation (SER).

I do not want to summarize the entire report, but will list the treatments identified as Established and those identified as Unestablished by the NSP. (Visit www.nationalautismcenter.org/nsp/ for more information).

Established Treatments are those for which several well-controlled studies have shown the intervention to produce beneficial effects. There is compelling scientific evidence to show these treatments are effective; however, even among Established Treatments, universal improvements cannot be expected to occur for all individuals on the autism spectrum.

The following interventions are Established Treatments:
◖ Antecedent Package
◖ Behavioral Package
◖ Comprehensive Behavioral Treatment for Young Children
◖ Joint Attention Intervention
◖ Modeling
◖ Naturalistic Teaching Strategies
◖ Peer Training Package
◖ Pivotal Response Treatment
◖ Schedules
◖ Self-management
◖ Story-based Intervention Package

Unestablished Treatments are those for which there is little or no evidence in the scientific literature that allows us to draw firm conclusions about the effectiveness of these interventions with individuals with ASD. There is no reason to assume these treatments are effective. Further, there is no way to rule out the possibility these treatments are ineffective or harmful.

The following treatments have been identified as falling into the Unestablished level of evidence:
◖ Academic Interventions
◖ Auditory Integration Training
◖ Facilitated Communication
◖ Gluten- and Casein-Free Diet
◖ Sensory Integrative Package

Although the study clearly outlines the criteria used to evaluate treatments, I feel they left very little room for common sense. Unfortunately, I believe that the report is just another report that families, educators, and service providers must sift through. To make my point, consider the findings for the Gluten- and Casein-Free Diet treatment. The report concludes that gluten-and-casein free diets as a treatment is ineffective. Does this mean that the relief (or alleviation of symptoms) that patients obtain from is irrelevant? That’s a little cruel. We all know that when we feel better, we perform better, but how do you prove that scientifically? The National Autism Center should have considered that when writing this report. Dr. Davies should have considered this when evaluated the report. Many children that could benefit from gluten-and-casein free diets will not because it “didn’t make the list of “Established Treatments”.

Unfortunately, Dr. Davies also talked a lot about the ineffectiveness of Sensory Integration and did not have encouraging information about occupational therapy (OT). This is another area that offended me. My son does not have autism, but he does have sensory processing disorder (with DCD). As I understand, all children with autism also have SPD. Without Occupational therapy with a sensory integrative component my son would not be a functioning/happy child. He was barely functioning before he started his OT treatments. But the exhaustive review done for the National Standards report concluded, “there is no reason to assume these treatments (SI) are effective. Further, there is no way to rule out the possibility these treatments are ineffective or harmful.”

The treatment needs to fit the child and it is our job as parents, educators, and service providers to sift through the massive amount of confusing and often conflicting information about the myriad treatments available. Yes, treatment selection is complicated and I don’t agree with a report claiming that the best way to determine if a particular treatment is effective is to look at the research that has been conducted. The “research” and scientific data obtained on treatments is limited in its capacity to “tell the truth”. There are a lot of limitations to scientific research, lots of assumptions made and real life just doesn’t fit into that nice little box that can easily be evaluated by scientists. I was an academic, a research assistant for years, I know how hard it is follow the proper “standards”. Unless we can be honest about the many limitations in scientific research, papers should not be written, distributed, and reviewed for the general public. That is when science becomes a huge disservice to all of us. My conclusion regarding the national standards report is not that there are many treatments that “fail”, but that this time, science has failed us.

Saturday, April 30, 2011

NOTICE OF ANNUAL AND SPECIAL GENERAL MEETING

Society for Healthy Sensory Processing Development

4787 Hoskins Road
North Vancouver BC V7K 2R3


NOTICE OF ANNUAL AND SPECIAL GENERAL MEETING

Notice is hereby given that the annual and special general meeting of the members of the Society for Healthy Sensory Processing Development (the “Society”) will be held on Saturday May 28, 2011 at 4787 Hoskins Road, North Vancouver, BC, at 4:00 pm, Vancouver time, for the following purposes:

1. To elect directors of the Society for the ensuing year.
2. To consider, and, if thought advisable, to pass a special resolution of the Society to amend the by-laws of the Society, as more particularly set out in Schedule A attached hereto.
3. To authorize the directors to act on:
a. Completing a mission statement for the Society
b. Order business cards/address stamp
c. Completing pamphlets describing the society and it’s mission
d. Organize support group
e. Plan an advocacy event in October
4. To act on such matters, including amendments to any of the foregoing, as may properly come before the Meeting or any adjournment thereof.

Dated at North Vancouver, British Columbia, this 21st day of April 2011.


Domenica Mastromatteo, President



SCHEDULE A

SPECIAL RESOLUTION

BE IT RESOLVED AS A SPECIAL RESOLUTION that:

(a) the existing by-laws of the Society be amended by adding the following to Section 10 – 57:

“by email”

to read: “A notice may be given to a member, either personally, by email, or by mail to the member’s registered address.”

Wednesday, March 9, 2011

NEUFELD PUBLIC ADDRESS



ANXIETY AND OUR CHILDREN:
SURPRISING SOLUTIONS TO A GROWING PROBLEM


Today, 1 in 5 children suffer from moderate to severe anxiety. Gordon Neufeld attended to this problem in his public address in Vancouver, BC on March 4, 2011.

What is Anxiety? Anxiety means “unease: a vague sense of unsafety and is characterized by feelings of apprehension and restlessness. It is basically an activated “alarm system”. Humans develop this system for a reason…nature provides us with this system so we can all function properly. (Note: the fetus has a working alarm system at 6 months in utero.) When a child is “alarmed”, the alarm system is given high priority and all the child’s attention is focused on this “alarm”.

How does this alarm system work? Figure 1: The Alarm System will be used to describe a good working alarm system. The alarm system is “turned on” when the child is “alarmed”. The alarm system is activated leading to Caution. The individual (the child) becomes conscientious, careful, concerned, and cautious. These are attributes of a good working alarm system. If futility is reached (e.g. mom is leaving for work), tears are usually released and this leads to adaptation and the child becomes resilient, resourceful, released, and restful. At this point the alarm system is turned off. The alarm is proven false (the world didn’t end….the child survived) and the alarm is recalibrated.

But if futility is not reached, the child will need courage. Courage isn’t possible without mixed feelings and children are not capable of experiencing mixed feelings until the age of 7 or 8. If a child reaches courage, the child becomes brave (but not foolish), perseveres, goal-oriented, and tempered. A caregiver can help a child cultivate courage by first fanning desires that will answer their fears, and eventually (as the child ages) by helping the child find his/her mixed feelings. For example, a child wants to be in a school play, but is terrified of being on stage. Fan his excitement for participating in the play. Help an older child recognize the mixed feelings of excitement and fear.

The above is a well functioning alarm system. Before discussing the non-functioning alarm system, Neufeld answered the question, what sets off the alarm system? The alarm system is set off when one faces the lack or loss of proximity with what or whom we are attached. You will need to have read or heard of Gordon Neufeld’s book on attachment, Hold On To Your Kids, to understand this. Briefly, we are alarmed by the threat of not being with, not being like, not belonging, not mattering, not being loved, and not being known by the one with whom we are attached.

Gordon Neufeld outlines 6 reasons why anxiety is increasing in our children:
• Unprecedented separation from parents
• Failing to develop deep attachments
• Children are becoming more peer oriented
• Children are becoming more alpha
• Parents are resorting to alarming their children (parents are becoming the source of alarm)
• Separation-based discipline is becoming the norm.

The root of the alarm is the lack or loss of proximity with what or whom we are attached. Unfortunately, Children cannot connect their anxiety with the separation they are facing because our “basic physiology protects us from what makes us feel too bad”. We’re blinded and simply can’t see it. This orphans the alarm and displaces the alarm to what can be seen….reasons are invented, irrational reasons which gives rise to alarming obsessions. This is why the rational fix to anxiety doesn’t work. It doesn’t get rid of the root of the problem.

Anxiety is an alarm without eyes; this gives rise to the dysfunctional alarm system, see Figure 2: The Dysfunctional Alarm System. The alarm system is “turned on” leading to Caution. When the child is blind to the true source of alarm, futility cannot be felt and courage is not reached (because what truly alarms the child cannot be faced). The child is lead toward caution. Without the understanding of the true source of the alarm, irrational obsessions and compulsive behaviours are developed. Anxiety reduction can be obtained by compulsive anxiety-reducing behaviours (e.g. oral activities such as sucking, chewing, nail biting and eating, rhythmic activity and stimulation, contact with transitional objects and physical activity). These behaviours temporarily relieve anxiety and turns off the alarm.

Gordon Neufeld’s suggests anxiety can be addressed by reducing the separation the child is facing. Slow down peer interaction, refrain from separation-based disciplines. Most importantly, bridge any separation that cannot be avoided by focusing on the next connection – until we meet again. Some other strategies are:
• Caregivers need to provide a place of rest and safety. Don’t overwork the alarm system. Don’t scare kids. Accept the alpha role in the child’s life. Accept to work on the relationship; the child needs to know that the caregiver is working on the relationship, so they don’t need to.
• Foster and accepting attitude of anxiety. Don’t battle the symptoms of irrationality. Give children room for their upset. If a child’s compulsion towards anxiety is inappropriate help them find acceptable substitutes for reducing anxiety.
• Bring alarmed children to rest and build resilience by helping to find the tears of futility when appropriate. This will restore and recalibrate the alarm system.
• Cultivate courage first by fanning desires and then by helping to find the mixed feelings when ready.


And what does this all mean for our children with sensory processing disorder? I think our children have very real anxieties caused by their disorder and the root of their anxieties are, maybe, more complicated. Understanding the “alarm system” and applying Neufeld’s suggestions for reducing anxiety can help us navigate our children towards solutions.

Friday, March 4, 2011

Here's our Letter to Oprah!

Dear Oprah,

I am writing about your show titled "The 7-Year-Old Who Tried to Kill his Mother.

I have a 7 year old with Sensory Processing Disorder with developmental coordination disorder, ADHD, and generalized anxiety disorder. I was happy to see the stigma and challenge of pediatric disorders and mental illness being discussed in such a high profile forum.

Zach has a variety of mental health disorders; however, the only diagnosis mentioned was “Sensory Integration Disorder,” also known as Sensory Processing Disorder (SPD). Your show inferred that sensory issues were the only challenge this child has. Because SPD was not explained on your show, nor was Zach’s mental health diagnoses, the audience was given the impression that children with a diagnosis of SPD may be inclined to rage attacks that could lead to attempts to kill others. This is not correct.

SPD is a neurological disorder, NOT a mental illness. SPD is a condition that exists when sensory signals are misinterpreted by the brain and inappropriate responses result. Most children with SPD do not have psychiatric disorders; however, children with severe psychiatric problems (like Zach on your program) may receive some treatment for comorbid (co-existing) SPD, but it is not the focus of their overall treatment plan.

Please revisit this subject and help clarify Sensory Processing Disorder before you are off the air.

Thank you for all you have done for parents over the years. Your show will be missed!

Sincerely,
Domenica Mastromatteo

Thursday, February 24, 2011

The Oprah Show Features SPD

From the SPD Foundation's website. Please read, share, and act!

Dear Friends of the Foundation,

On Friday February 18, the Oprah Show had an exclusive story titled, “The 7-Year-Old Who Tried to Kill His Mother,” a frightening, yet true story of young Zach and his mother, Laurie.

“Sensory integration disorder was Zach’s first diagnosis and that has to do with how Zach perceived his world," Laurie stated on the show. "So he was incredibly sensitive to everything. He would do things like throw himself on the ground, thrash his body, where a normal kid, it would hurt, and he would get pleasure. He would laugh. Sound bothered him. Light, clothing, that sort of thing, and everything was accentuated 10 or 15 times of what a normal person would experience. That's what sensory is.”

Zach has a variety of mental health disorders. The initial diagnosis mentioned by Oprah was “sensory integration disorder.” The majority of the show focused on the tough challenges of his mental illness and the family’s journey. Zach is currently in a residential therapeutic school in New Hampshire that specializes in alternative approaches to helping children like Zach.

Sensory Integration Disorder (also called Sensory Processing Disorder) was not explained in depth, nor was Zach’s mental health diagnoses, leaving the impression that children with a diagnosis of SPD may be inclined to rage attacks that could lead to attempts to kill others. We have received a plethora of letters from parents and others who are frustrated and puzzled by the Oprah show.

Although clearly there is a misunderstanding about what Sensory Processing Disorder/Sensory Integration Disorder is, this constitutes a great opportunity for all of us who care abut the disorder to finally bring it to the attention of the Oprah Show. We have been trying to reach Oprah for over 10 years and this may just be our ticket into the consciousness of their producers.

We are rallying a grassroots letter writing campaign. Our goal is to get 10,000 letters to Oprah by next Friday, March 4. Go to www.spdfoundation.net/oprah for our suggestions, instructions for submission, and ideas about what could be included in your letter. Please also send a copy of your letter to us at oprahresponse@spdfoundation.net so we can tally the letters submitted.

Stay positive. Start your letters with what was right, e.g., "SPD is a devastating and unrecognized disorder," and add other facts as you wish (see specific facts posted at www.spdfoundation.net/oprah) rather than focusing on what you felt was innacurate.

If you wish to read a summary of the show, go to:
http://www.oprah.com/oprahshow/Children-Dealing-with-Violent-Rage

Sincerely believing in the power of grassroots response campaigns, and in parents,


Lucy Jane Miller, Ph.D., OTR
Founder and Executive Director

Sunday, February 20, 2011

It's Official

The Society for Healthy Sensory Processing Development was incorporated under the society act on January 13, 2011.

What's next? We have to start doing stuff.....Here are the main purposes of the society (and things to look forward to in the future).


a. To raise awareness within the general public of sensory processing and its related disorder (sensory processing disorder);
b. Promote the importance of fostering and supporting healthy sensory integration/processing;
c. To educate caregivers, parents/guardians, government and agencies about sensory integration and sensory processing (or sensory processing disorder);
d. To provide support for parents/guardians of children with sensory processing issues;
e. Enhancing the quality of life for children with SPD and their families;
f. To raise, use, invest and reinvest funds to enable the society to carry out its stated purposes;
g. To affiliate with and support any societies, associations, companies or institutions having objects similar to those of this society

Where do we start? Help me out by filling out the survey below and stay tuned for more info.

THANKS!

Wednesday, February 16, 2011

A New Year


Photo of John at around age 2. He is now 7 years old and still struggling with utensils!


I had plans to start this new year by writing lots of helpful, informative posts about living with a child with SPD....but honestly, I'm usually so tired that when I do get to visit with my computer, I don't want to dwell on issues past....issues dealt with. I don't want to think about my life and how I'm coasting through.....however, I must admit I am quite pleased with myself on how well I'm coping with everything. So, really, I just want to give myself a pat on the back and climb into bed and sleep.

But honestly, things really are running very well. I've let go of my wish for silence and order and actually, I've let go of living my life the way I want. The kids get to jump and scream when they please, eat what they want (with the occasional veggies sneaked in)....they can even eat the way they want...yes, we've settled (the kids and I) into a pretty crazy routine with trampolines in the living room and pillows flying all over the place, and the african savanna blocking our way to the dinning table and dirty children eating spaghetti by shovelling it in their mouths with uncoordinated fingers...okay, only John does this. Kate just never eats supper. This is my family...and yes, I want it too change, but....maybe next year?

Maybe not....change is happening....now! My boyfriend (Richard) and his son moved in. We were waiting for my divorce to go through before moving on with our relationship, but that's not going to happen any time soon....so we decided to move on, or move in together. Richard finds the broom and sweeps the african savanna to a corner...we all stare in amazement....I guess it can be moved....the pillows are always picked up and placed back in place...the trampoline....he wonders if we could move it downstairs....like out of the way....I have to put my foot down....that thing is a life saver....it's staying! But the kids are always jumping on it.....that's the point! Imagine what they would do if there wasn't a trampoline to jump on! And can't John eat his spaghetti with a fork? He's trying, I say....but Richard and Cage (his son) are disgusted! "So don't look!" yells John....Ah, I've trained my children well! And does it always need to be so loud?

And really my instinct is to support Richard....because really, I want everything he wants....I want "normal" but here's the thing, we expect children (like my son) to change into what we want, but they are the ones diagnosed with the disorder. John has regulation disorder (among other things)....he can't just change and do what "we want". We, on the other hand, don't have disorders that define our capacity for adapting to the world. So yes, we need to learn to "adapt", because we can easily "adapt"....(although most of the times it doesn't feel easy and, knowing this, I applaud Richard and Cage's ability to adapt to our situation).

I wish I could make everything just perfect for everyone, but this is how perfect it can be right now. John spends his day at school, forcing himself to "adapt" to their philosophies, doing things that are so hard for him....all day long. When he comes home, I want him to relax. I want to give him the place to just be and to sometimes fall knowing that we are there to catch him and no matter what, we love him just the way he is.

Friday, January 14, 2011

Back to basics in the New Year

Posted on January 5, 2011 by Gordon Neufeld

Resolutions in the New Year tend to bring us back to basics. Undoubtedly this is why health is our overwhelming preoccupation as judged by the fact that exercise and diet top most New Year’s resolution lists. Upon reflection, health clearly becomes the ultimate priority, as we need our health to prolong our time and preserve our ability to make use of it.

Is there a parallel priority in parenting, something equally basic and like health, in need of renewed resolve? I believe so. Most simply put, it would be to convey to our children the invitation to exist in our presence. It is hard to imagine anything more important, and at the same time, more difficult to remember in the day-to-day busyness that is parenting. I am convinced, after a life-time of putting the pieces together as a developmental scientist, after 40 years of practicing as a clinical psychologist, after 170 cumulative years of parenting and grandparenting, that this simple invitation contains the essence of what is required for healthy development to unfold....

read more...http://gordonneufeld.com/blog/?p=369

Wednesday, January 12, 2011

“ADVENTURES IN SOCIAL EMOTIONAL REGULATION TRAINING” A ‘Funtastic’ Social Learning Group

WHO: For children ages 7 – 11 years old with an Autism Spectrum Disorder diagnosis, or social skills deficits. This group is eligible for Autism Funding.

WHERE: OT Clinic at 3836 Eton Street, North Burnaby, B.C.
This group will be facilitated by a Registered Clinical Counsellor and an Occupational Therapist, both with extensive experience working with children with Autism Spectrum disorders.

WHEN: Starting Friday’s January 14th – March 4th (8 weeks), 3 30 – 5 pm

WHAT: This group is in part based on Super Flex Social Thinking Curriculum developed by Michelle Garcia Winner (www.socialthinking.com). It was designed specifically for children that tend to be rigid in their thinking and have trouble shifting their thoughts or plans around the plans of others to adapt to the social world around them. The goals of the group are to help children develop skills to enable them to be socially flexible and able to adapt to changes around them. Also to help students increase their awareness of social behaviors, staying on topic and to identify how their unexpected behaviors make other people feel. Strategies that are used in group ensure a highly structured and predictable environment. Parents are provided with the curriculum, homework to practice at home and taught how to practice social skills outside of group to ensure the children generalize the skills to other settings. Students in the Social Learning group will have difficulty regulating their own behaviors in the moment, and this curriculum provides a FUN forum in which they can explore their own challenges and demonstrate ways to modify their thoughts and related behaviors. This course has been running for 4 years and is highly successful in teaching social skills to those who struggle to develop them naturally. Kids love this group!
Total cost of the programme is $700 per child.

CONTACT: Courtney Nichols M.A – Painted Lighthouse Counselling & Consulting Inc.
www.paintedlighthouse.com
courtney@paintedlighthouse.com 604.833.2562

Wednesday, January 5, 2011

“ADVENTURES IN SOCIAL EMOTIONAL REGULATION TRAINING” A ‘Funtastic’ Social Learning Group

WHO: For children ages 4 – 6 years old with an Autism Spectrum Disorder diagnosis, or social skills deficits. This group is eligible for Autism Funding.

WHERE: OT clinic at 3836 Eton Street, North Burnaby, B.C.
This group will be facilitated by a Registered Clinical Counsellor and an Occupational Therapist, both with extensive experience working with children special needs including Autism Spectrum disorders.

WHEN: Starting Friday January 28th – March 18th (8 weeks), 9:30 – 11:00 AM.

....start date has been moved to January 14!....

WHAT: This group is in part based on Super Flex Social Thinking Curriculum developed by Michelle Garcia Winner (www.socialthinking.com). It was designed specifically for children that tend to be rigid in their thinking and have trouble shifting their thoughts or plans around the plans of others to adapt to the social world around them. The goals of the group are to help children develop skills to enable them to be socially flexible and able to adapt to changes around them. Also to help students increase their awareness of social behaviors, staying on topic and to identify how their unexpected behaviors make other people feel. Strategies that are used in group ensure a highly structured and predictable environment. Parents are provided with the curriculum, homework to practice at home and taught how to practice social skills outside of group to ensure the children generalize the skills to other settings. Students in the Social Learning group will have difficulty regulating their own behaviors in the moment, and this curriculum provides a FUN forum in which they can explore their own challenges and demonstrate ways to modify their thoughts and related behaviors. This course has been running for 4 years and is highly successful in teaching social skills to those who struggle to develop them naturally. Kids love this group!
Total cost of the programme is $700 per child, including a parent education session.

CONTACT: Courtney Nichols M.A – Painted Lighthouse Counselling & Consulting Inc.
www.paintedlighthouse.com, courtney@paintedlighthouse.com 604.833.2562

Blog Archive

Sensory Processing Disorder (SPD)

Sensory processing disorder (SPD) is a neurodevelopmental disorder that affects at least one in twenty children. Children with SPD don't process or experience sensory information the way other typical children do; therfore, they don't behave the way other children do. They struggle to perform tasks that come easier for other children. Consequently they suffer a loss of quality in their social, personal, emotional and academic life.

The Sensory Processing Disorder Foundation is dedicated to continue their research into the knowledge and treatment of SPD, so that, as Lucy Jane Miller writes in her book "Sensations Kids", "the millions of sensational children currently "muddling through" daily life will enjoy the same hope and help that research and recognition already have bestowed on coutless other conditions that once baffled science and disrupted lives."