Each month the staff of Sovia Therapy sponsor a Clinical Exchange aimed at educating providers on various topics of interest. The minutes from those meetings will be posted in this section.
September 2016: Vision and Visual Strategies in Early Intervention: Cheryl Stewart, TVI.
VISION AND VISUAL STRATEGIES
Difference between Vision Therapist and Teacher for the Visually Impaired (TVI) – Vision therapist implies ‘fixing’ of vision. TVI are trained to go into classrooms and make adaptions for the visually impaired student. This includes presentation of materials, playgrounds, classroom adaptations. Many TVI are not interested in working with children that are birth to 3.
Ophthalmologist – medical physician that diagnoses the child, assesses optic nerve. There are 3 different types – Adult – usually also retinal specialists. Pediatric – specializes in working with young children (Dr. McMannaway, HMC Physicians, Armesto Eye Assoicates). Neuro Opthlamalogist – Dr. Soni – he looks at connection between brain and eye. He is looking for disease in the eye.
Optometrist – not a medical doctor. Did 3 years at optometric school. Testing for vision, visual acuity. Not prescribing medicines or surgery.
Developmental Optometrists - specialize in vision therapy, functional vision evaluation (much more comprehensive with multi facets . – Dr. Moon – State College, Dr. Septage – Selinsgrove.
Vision Therapist – could be the optometrist or someone trained by optometrist. Working on strabismus (lazy eye), brain injury, convergence, tracking smoothly. Most of their population is children having difficulty in school specifically with reading. In order to do therapy, the child must be able to cooperate, so they generally need to be older.
Occularist – eye prosthetist. Very expensive to construct. Could just have a shell that holds the eye open – so they may have some of the eye left . Or complete eye to help keep eye open.
Optician – person that makes the glasses.
Teacher of the Visually Impaired – education degree
Orientation and Mobility Instructors – teaching people of the visually impaired how to get around. Starting children as soon as they can creep on hands and knees. Relatively new field for vision.
Transcription specialist – specialized schools for the blind turning books into braille. Computerized now with an embosser. The transcriptionist proofs the book and makes sure it is correct. Seedlings.org and APH (American Printing House for the Blind) provide books. The Federal Government provides what children need (quota money) so they can participate in education. Anything mailed for the blind is free.
Rehabilitation Teacher – teaches someone that is newly blinded how to get around.
Low vision specialist – looks at equipment to see if adaptions would help
Equipment vendor – equipment to help with magnification and braille.
School based services go until the child is 21. TVI are doing expanded core curriculum – daily living skills, recreational skills. It used to be that if you were blind, you were educated at a school for the blind. If you had another disability you were not accepted.
Vision development as it relates to cognitive skills: (1) awareness of environment (2) attention to the environment (3) understanding of the environment.
Babies are first attracted to light, then people. Most see 6-8” in the beginning. Last is objects. See best near (arms reach), then further away. First interested in peripheral vision, then central vision. Will look at things that are familiar first before things that are new. Will also look at parts of things before the whole thing. Simple shapes to complex and large to small objects.
Early Intervention didn’t always have visual services. In the 80’s, schools started to service children at age 2. We now know that the younger the better. Most services are largely not provided by the IU. (some local areas do – CMSU, York, Lancaster)
Parents feel the diagnosis of blindness is devastating and they go through the grieving process as if the child has died. TVI help families understand and stop being afraid of the diagnosis. Education is key. Talk about how the rest of the family feels – grieving for the family and child and what they will never be able to do. Emphasize treating the child like a typical child and have them experience as much as possible. We learn from incidental learning.
Diagnoses seen – Cortical Visual Impairment (biggest diagnosis right now). Eyes are fine, brain does not recognize signals. We can help kids to see better – help to ‘cure’ the issue. This is the child who looks right through you, or looks at the ceiling fan, waves hand in front of face, only picks up red toys, stims from anything shiny, or acts totally blind. “Look, look away, look” – need to look away to play with the toy. Does not necessarily need to be a child with other diagnosis. Optic Nerve Hyperpalsia – small underdeveloped optic nerve. Sometimes need growth hormone, sensory issues, eating disorders. Not really a vision disorder – actually a brain disorder. Albinism – two kinds – can be completely involved with hair and eyes or just pale eyes. Congenital cataracts – can have as a child. Nystagmus – eye shaking that can come from all kinds of vision loss. The room isn’t shaking, just blurred. Strabismus – eye muscle disease with combination of eye turning.
Not keeping patch or glasses on is not a vision issue -it’s behavioral.
Always tell child what you are doing. Use tapping or rubbing to let them know you are picking them up. Tell the child when you come in/out of the room. Tell them what you are doing. Keep things simple with good contrast. Use black or white background. Lighting/glare – light should come from behind child and onto thing the child is playing with. Watch for squinting and not responding based on lighting. Bigger pictures might not be better – smaller might be easier to see.
Medication Assisted Treatment and Recovery Support
Kristin Varner, RASE Project
Outlined RASE Project services. www.raseproject.org 100 North Cameron Street, Suite 401E, Harrisburg, PA 17101. 717.232.8535.
We started with addiction: Addiction is a chronic, relapsing brain disease that is characterized by compulsive drug seeking and use despite harmful consequences. (National Institute on Drug Abuse). This is not a moral failing, but an organ system failure. PA is #1 for male opioid overdose and #7 for deaths overall. Your body does not know the difference between medical pain management or heroin. Over prescribing of medications led to heroin when people could not get more prescription drugs.
Disease is defined by disease classification: pattern of symptoms, chronic, progressive, subject to relapse, and treatable. It is not curable. When you have the disease of addiction, if you engage in behaviors that are conducive to the disease, you will relapse. Must change lifestyle to recover. Other lifestyle diseases are diabetes, heart disease, asthma, etc.
Addiction has biological and non biological factors. Addiction is 50% genetic. Females use early and at quicker rates than males. If someone in your family suffers from addiction (any kind – shopping, food, gambling) you are 90% likely to carry on that genetic predisposition. Many people in recovery will have symptoms of mental illness. Individuals in early recovery have extreme anxiety. These individuals are used to doing everything with a chemical in your system. Supportive services help them thru the process without adding another drug in the system.
Non biological issues include cultural and social values, developmental variations, personality difference, abuse, trauma, parent use and attitudes, community/social attitude, and perception.
Substances with the potential for addiction affect dopamine levels in the brain. Initially, a person takes a drug to change their mood, perception or emotional state but in reality they are changing their brain. People with a substance abuse disorder have less dopamine then others. Less ability to feel good or feel happiness. When they start using drugs, the drug releases dopamine and they feel better. The drug of use becomes the key to life. After flooding their brain with dopamine, they have no dopamine left. It takes 1 year to 18 months to restore the dopamine that was used. Our insurance companies authorize 7 days to 2 weeks to 30 days of rehab. The brain needs more time to heal.
Historically, there have been ‘miracle’ cures for alcoholism and addiction. Examples included Dovers Powder, Laundanum, Godfreys Cordial, McMunns Elixar, Mother Bailey’s Quieting Syrup (this was morphine to stop babies from crying. Many died from overdose). Many of these products contained high level of substances that addicted folks.
Medication Assisted Recovery with medication assisted treatment. This refers to treatment for a substance use disorder that includes a pharmacologic intervention as part of a comprehensive substance use disorder plan with an ultimate goal of patient recover with full social function. The hopes of the program are to improve survival, increase retention to treatment, decrease illicit opiate use, decrease hepatitis and HIV, decrease criminal activities, increase employment and improve birth outcomes. Withdrawal stabilization is the start of recovery. If the brain receptor is not filled with the opiate, the individual goes through withdrawal. Feels like the flu x100. Individuals suffering from addiction end up relapsing to complete routines. 80% of opiate users start with a prescription pain medication. Opiate addicts do not like pain and fear pain. Individuals will not die from just going through opiate withdrawal. Alcohol and benzodiazepines need a medical withdrawal management (Naltrexone, disulfiram, acamprasate calcium – takes away cravings for alcohol ). There is a huge environmental piece that goes with addiction. There have been babies born addicted that do not grow up to become drug addicts. So our babies that are on wean down protocols from pain management need support environmentally. Coping skills are lacking with individuals that suffer from addiction.
Vivitrol – injection – long lasting means of controlling cravings and controls relapses. If also on suboxone or methadone. Costs about $1200/month for the injection. Decreases cravings for alcohol. When medication wears off, the cravings come back and then the individual overdoses.
Disulfiram – only a deterrent. Interferes with metabolism in the brain.
Acamprosate Calcium – speeds brain recovery process by reducing risk of relapse.
Toprimiate – anticonvulsant, mood stabilizing medication. Not yet approved by the FDA for addiction.
New medications: Zofran, Serzone, Lioresal (baclofen) . May reduce alcohol cravings and intakes.
Opiod Medicaions: Methadone (clinic) – synthetic opioid blocks effects of heroin and other prescription drugs containing opiates. Liquid form out of a methadone clinic. Individual needs to go everyday for medication. As individuals do well in treatment, they can have a take home medication. Methadone is a full opiate that is a substitute for the opiate. Counseling is required with drug screenings. Very difficult to come off of – hardest to detox from. Very long half life – stays in body for months. Boiling Green or Valley Forge detox centers. Keep dose as low as possible for eventually getting off of methadone. When you wean off methadone, that’s when the most intensive treatment starts. Recovery plan to come off of methadone is not as successful. Plan is keep them on methadone and safe. Methadone causes cavities, constipation, and brittle bones. Methadone is cheaper (.30/dose). Families that have not taken their methadone for the day will appear impaired. There is an option to refer the individual to a Recovery Specialist through the RASE project. Services are free. They can connect them to the social service pieces. They are required to go to counseling.
Any type of medication for addiction will not change anything unless you change your lifestyle.
Suboxone – buprenorphine – synthetic opioid described as a mixed opiod agonist-antagonist. Brain healing can start on suboxone. Buprenorphine attaches to brain receptors and locks them so the individual no longer needs the opioid. If the individual uses during this process, the body goes into precipitated withdrawal (worse withdrawal ever). Must be taken every day at the same time. There is a 13 month wean off protocol. Suboxone does have a street value because it has a euphoria the first few days before hitting a ceiling. Any program that deals with suboxone is highly monitored. Have to be evaluated for the program. Must be addicted to opiates, come to counseling, recovery support, film count (count medication that are supposed to have), drug testing. Women with babies on saboxone have minimal withdrawal symptoms than methadone. Subutex is similar but may be prescribed for pregnant women. Physician’s must go through a course to be able to prescribe saboxone.
Vivitrol – non addictive, no opiates and blocks opiates. Can be used for opiates or alcohol. Monthly injections $1200/month. Blocks cravings. Injections covered by a grant as long as they participate in the program.
Rationales to not enter recovery: limited options, stigma, recovery setting have been highly structured and providers had subscribed to an abstinence based model. Individuals can get into recovery and stay clean without medications through the use of recovery support.
During every day, individuals are working in either a relapse or recovery process. Good retention would include people being in work, clean while in treatment and strong support systems.
Narcane – available at any pharmacy. It has been around for years. The prescription was written by the state. If someone has overdose, you can inject with narcane. It reverses the effects of the overdose until they can get in to the 911 system. It does not work on just anything. Recovery specialists meet the person on scene at the hospital and stay with them until a recovery bed is available in rehab. (Warm Hand Off – York, Adams and Lancaster). We can refer to recovery specialists in Dauphin, Cumberland, Perry, Lebanon, Lancaster Counties.
Helping Parents Accept their Child's Diagnosis and The Grief/Loss Process
Laura Bosley, LSW
Helping Caregivers and Parents through the Diagnosis Process
As professionals we need to be sensitive to parents and what they’ve been told by professionals.
Example: “your child will never walk, talk, or communicate”, “he/she will not live past their first birthday”
Parents can respond positively or negatively to their child being diagnosed. There are multiple factors impacting caregivers’ response to diagnosis:
Specificity of disability
Length of diagnosis process
Parent mental health
Our societal views on children with special needs
Diagnosis process: Many view the beginning of the process as a time where the concerns about the child’s health are expressed, evaluations are made.
Why is a diagnosis important to a family?
Holds the key to funding.
Knowledge, can provide a course of action.
Can provide a prognosis.
Can help with a network of support.
Positive growth of a child depends on how the family reacts to the diagnosis of a disability in their child.
How parents perceive the diagnosis process: It’s emotionally- laden, in the time which the parent redefines themselves as parents.
Professionals hold the knowledge and can be confusing. They can be judgmental.
What can we do to improve the diagnosis process and family understanding?
We should ask the parents what their learning style is.
How much and why types of communication they find helpful
Build rapport with honesty and caring.
Encourage parents to ask questions.
Teach parents to advocate for themselves.
Important to know the resources
Readily admit to unknowns and seek answers.
How can EI providers collaborate to be more sensitive to parents during the diagnosis process?
Normalize feelings, allow parents to express feelings in their own way. Parents may not be on the same page.
Elisabeth Kubler-Ross On Death and Dying (1869)
Stages of grief: Denial, anger, bargaining, depression, acceptance No one person goes through all these stages in the same way. It doesn’t necessarily happen in this particular order. It is import to help families normalize their feelings. Possible feelings of anxiety, fear, powerlessness, guilt, confusion, sadness, envy, disappointment, rejection, mistrust, uncertainty.
If a parent has lost a loved one you can ask them “Tell me about your child, mother, brother… ect.”
Coping skills – take care of themselves so they can be there for their child,
Additional help for parents -
Parent support groups
Rely on positive sources in your life
Learn the terminology
Do not be afraid to show emotion
Do not be intimidated by medical professionals
Take one day at a time
Encourage parents to talk with family, spouse and significant others
Help them not be afraid of medical professionals
Tear Soup: A Recipe for Healing After Loss - Book by Chuck DeKlyen and Pat Schwiebert
When Bad Things Happen To Good People – When Bad Things Happen to Good People - By: Harold S. Kushner
Option B – Option B: Facing Adversity, Building Resilience, and Finding Joy – By: Sheryl Sandberg, Adam Grant
Stabbed in the heart –
Stabbed in the Heart: Three Murdered Children Two Resilient Mothers - By: Lynn Shiner (Author), Nancy Chavez (Author), Nancy Eshelman (Author)
Use of term “in denial” in labeling parents of children with disability stems from Kubler-Ross’s work on death and dying
Denial can sometimes be useful to some parents during the grieving process.
The term can sometimes be used in a judgmental way by professionals toward parents.
Professionals who categorize parents as “in denial” unaccepting, or difficult, lose the chance to understand and learn from them.
It may be helpful to rephrase the term “in denial” to “in hope”
It is important to be honest and hopeful.
We cannot diagnose but it is our ethical responsibility to point out things to families that we are seeing.
Sensory Processing and Eating Issues in Children with Autism
The Seven Senses of the Body
Vestibular (perception of our body in relation to gravity, movement, balance; spinning, jumping, swinging)
Proprioception (sense of body position in space and strength of effort needed for movement)
Responses to Sensory Input: Hyporesponsivity – takes more than average sensory input to get a response OR Hyperresponsivity – takes less than average to get a response to sensory input
Early signs of sensory issues include problems with:
Bonding and connection
Sensory Processing Disorder – Condition that exists when sensory signals don’t get organized into appropriate responses. It is a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly.
Sensory Processing Disorder (SPD) is different from Autism (ASD). SPD is just one characteristic of Autism. Just because a child has SPD it does not mean they have ASD.
Low sensory registration – notice sensory stimuli much less than others, may seem uninterested, self-absorbed or dull affect, miss cues that might guide behavior, interventions are directed at increasing the intensity of sensory input.
Sensation Seeking – enjoy and generate extra sensory input, very active, continuously engaging and excitable, becomes a problem when seeking behaviors keeping the person from continuing in a necessary activity.
Sensation Avoiding – Bothered by input more than others. Tend to be rule-bound. Ritual driven and “uncooperative”
Sensory Sensitivity – detect more input than others, distractible, hyperactive and can be “complainers”, notice more sensory events than others do.
What does it entail? It is complex occupation requiring oral motor, fine motor, sensory processing and social communication issues.
Mealtimes help delineate time in a day, provide an opportunity for family members to bond, learn to communicate and share and practice cultural routines.
Considerations that influence mealtime: Family composition, cultural beliefs/values, personal factors.
Feeding issues and Autism
Factors that impact eating: Sensory issues, behavioral issues, medical issues, attention issues, language/social issues
Oral sensitivity – resistive to textures in and around the mouth, child may not put toys or other objects in mouth, child may gag or even vomit with new textures. Have difficulty with face washing, nose wiping, teeth brushing
Tactile Defensiveness – Try exploring textures outside of mealtimes, show child that textures can be cleaned off, Use of utensils to keep the hands clean, provide napkin or wet cloth during mealtimes to wipe hands.
Food selectivity – diets tend to be high in carbohydrates and low in fiver and protein, often prefer processed foods because they are more consistent in flavor expectation, preferences can be highly specific including brand.
Trying new foods:
Offering non-preferred food with preferred food at same seating, tolerating the food being on the same plate regardless of whether they try it, use of visual reward system, modeling from siblings or peers.
Food Chaining – builds on successful eating experiences, foods that a child accepts are studied for patterns in taste texture and temperature. New foods similar to the ones the child eats well. Expanding while maintain texture and flavor (trying different brand of chicken nugget), Vary taste while maintaining texture, vary texture while maintaining taste, vary taste and texture.
Medical issues: Constipation and allergies
Constipation x4 more likely in children with ASD and related to diet issues. Depending on fother factors may benefit from infant massage for stomach discomfort/constipation, we can support families in talking to their pediatrician or specialist about these problems
We do not want to try to offer suggestions without medical supervision: Miralax, Pediasure, other supplements
Child has difficulty sitting in chair for meals, child would prefer to graze, eating for short periods of time, eating and playing at the same time, decreases social demands as well, Provide sensory diet activities before mealtimes, exploring seating options (high chair, booster, child sized table), use of time or simply limiting mealtimes to an achievable length, use of plates, utensils with preferred characters.
Child not able to express hunger or thirst – constant access to food and drink which decreases child’s need to communicate or interact with family, child will have tantrum with new foods are presented
Child is not comfortable making social contact with others to get needs met, child does not like to sit with attention focused on them during mealtime, child has a difficult time sitting among family members, making eye contact.
Use thinker textures with stick to spoon better (yogurt, applesauce) , Set up bites on fork to practice taking to mouth, practice utensil use outside of mealtime (scooping in bean box, pretending to feed stuffed animals, using fork with playdoh)
Challenging Parent Behaviors: Clinical Exchange with Bridgette Vogelsong, SI and Teresa Jones, SLP
1. How do you get parents to reflect back to you?
“Show me” what it is you can do. Reflect back on what you worked on last visit and ask questions about showing you what you can do next. Language barriers can be difficult and may be difficult - ask how that fits into their routines. Very difficult to be engaged as a parent when there is little change week to week.
2. When the parent is relaying information to you and they have an inaccurate assessment of the situation, how do you reflect/redirect without offending them and continue to build trust?
Ask for an example of when the behavior happens with that child. Show me what he is doing. Families will have barriers for the reporting. Cross check facts and help to shape the correct story. Be careful not to lose the family member – because child could be able to respond to the family best. Cross check when they are demonstrating the skill. Could use a skill list for other settings so everyone knows what the child is doing.
3. Dual language households with red flags for ASD are difficult to tease out. Families tend to blame it on learning two languages. Go back to symptoms and see what the family thinks is normal. Education on what autism is and what the flags are. Need to be sensitive and aware of the family’s culture and cultural expectations.
4. Watch comments like ‘you are the expert what do you think’. Does that mean they don’t want to work on that skill or that skill isn’t important. Ask what is working well and what is not working well.
5. How to set up ‘good families’ – ask questions to see how family is doing. Building relationships with families early.
6. Behavioral strategies are difficult to implement and change. Shared handout about adult learning. Adults enjoy learning opportunities and that will be appealing, adults learn best when expectations are clear, habits and beliefs take time to change, learning is best when it fits into established patterns of interaction, adults learn systematically and sequentially, adults tend to teach others the way they like to be taught, and active learning opportunities increase adult participation.
7. Discussions about autism or social differences. Should not be happening at annual evaluations but does happen at initial evaluations. Use the MCHAT to help guide conversations. Family is in denial (maybe the right term is ‘not ready’). Guide to another place for help in the diagnosis. Dr. Stranko (Pinnacle Health/UPMC Infant Development Program – approx. 4 months); Dr. Tiernany (HMC – 1 year wait time); Dr. Ramer (HMC – 1 year wait); Philhaven Lancaster (Center for Autism and Developmental Delays – has a fast track program and they do take MA); Geisinger Medical Center (Center at Bucknell); Lancaster (Dr. Carey – New Day Psychological Services). Check ASERT website as a resource center for autism.
8. When talking with parents, we like to incorporate strengths and specifics about the child so the parent understands what needs remediated. Give a case study of how this worked well, and one where it didn’t go so well and how you made it work.
‘Catch them being good’ – better positive reinforcement vs negative reinforcement. Immediately reward the positive behavior. Helps to build the family’s capacity for implementing strategies. Parent/caregiver praise is important to give. Talk about their child’s strengths
9. Engaging parents who are on their phone or who have the TV on an adult show. Ask parent to bring back something to engage the child (cotton balls, newspaper, qtips). Use low tech (play from recyclables). “Let’s see if they can pay attention better with the TV off vs on”.
10. We know that children that do not have a caring attentive parent could be at risk for attachment issues. How do you facilitate attachment in your day to day therapy sessions?
Set routines at home (provide structure) and limits. Don’t break routines. Give activity ideas (tickle time, cuddle time, bedtime story). If they wake in the middle of the night it’s ‘business only’ -diaper change, food. No cuddling. With children that have addicted parents, (methadone) what do services look like? Tracking? Check sensory strategies (bouncing, vibration, tickles) to gain attachment.
11. C2P2 parent training is worthwhile to recommend to empower parents. They help with legislature and understanding laws. Need to be involved with state wide training and involvement.
12. Sometimes we are the first or second person to point out a delay or difference with the child. How do you facilitate that conversation? Or if you are the second/third therapist from a case where others have been replaced/fired?
Tease through what might be the reason for the obstruction. Look at the child in a broad sense – communicate with the other therapist on the team and see how they are handling the issue. Sometimes difficult when the team does not get together often. Best to discuss 1:1 first rather than in a team meeting.
Cultural differences? Indian culture appears to be high incidence? Is it their culture?