Episode 11 notes

Hey, there everyone. It’s Sophilia Lark-Woodbury, and this is episode 11 of the S.O.S. podcast.

Today is Monday February 5th 2018, and I have a quick announcement to make before we jump

into the podcast. I have decided that until we resolve all technical difficulties with my recording

and editing equipment, I am just going to produce one podcast a week on Fridays, and when I

am certain I can move forward with a twice per week production schedule, I will post 2

podcasts each week from that point onward. It’s just been too difficult to try to keep up with

the intended schedule with all the things that have been cropping up as of late, so we’ll just

wait until the dust settles and hope to get on the right track in due time.

Well, okay. Let’s get to what we’re really here for, which is to access information on available

resources for your self-care as well as information on the available services and supports that

may be suitable for facilitating your child’s continued growth and independence.

 So last week I ended podcast 10 with a teaser about what you should expect this week. I

mentioned that I would be sharing a comprehensive resource list that addresses some

of the most pressing service needs of families of children on the autism spectrum such

as how to find respite care, how to access transitional support services, and how to gain

access to community supports and services your child needs now.

 In a 2014 study conducted by Canadian researchers Sandra Hodgetts, Lonnie

Zwaigenbaum, and David Nicholas at the University of Alberta, the researchers compiled

profiles of selected families of children with autism spectrum disorders along with

predictors of their services needs. And they found that the greatest needs of 65% of
 families fell into three categories, namely 1) respite, 2) long-term planning for

adulthood, and 3) transparent information about current available supports and services

and how to access them.

 In essence, these families believed that they could be best helped through services that

offered them adequate breaks and free time, transitional planning opportunities for

their emerging adult children, and access to transparent information about current

services that might help their child improve developmentally.

 As a mother of a child on the spectrum, as well as an autism advocate, I saw the need to

help bridge this gap by not only offering a self-care program for moms of kids on the

spectrum, but also by creating a list of general services that moms/parents could use as

a guide to help them navigate the complex systems of care to meet their needs for

improved family life and child care.

 So let’s begin unpacking some of these resources to see how you can begin taking

advantage of services and opportunities that best fit your situation.

 So, I like to begin with an analogy about self-care before other-care. You all have

probably heard about the airplane cabin pressure analogy where flight attendants

instruct adult passengers to put on their mask first before helping their child or others.

 The reason for this is because as the air in the cabin rapidly thins, it becomes harder to

breathe, and you need to be able to breathe comfortably as you are helping others.

What if you have trouble getting the mask on the child due to it getting caught up in

clothing or any other interference that can happen? If you have not given yourself

oxygen first, the likelihood of you passing out before you can help your child increases
 exponentially. In this instance, the risk of not taking care yourself first increases the

chances that both you and your child will go unconscious and possibly die.

 My self-care program takes this same approach, albeit to a lesser degree. No one is

going to necessarily die, but, I believe that if the parent does not take care of her or

himself first, then the child will end up receiving less than ideal care, which will most

likely have a negative impact on his or her developmental progress.

 This means that both the parent and the child will end up with more, not less, problems

in the long-run.

 This is the last thing we as parents of children on the spectrum want to hear when we

often feel like we are barely getting through the day with around-the-clock care.

 But, here’s the good news: You can become an expert navigator in finding the services

that best suit your family’s needs if you have the right guide. Today, I’m going to provide

you with a guide that I believe will set you on the right path to getting what you need to

take care of yourself and your child.

 I’d like to add a caveat by saying that this guide is in no way intended to be

comprehensive as I believe there are resources out there that are more comprehensive

in terms of outlining services that apply to parenting in general, but my guide is

intended to address specific needs identified in the literature regarding access to

information on available services and supports for facilitating the child’s growth the

independence, family/social support, and respite care.

Information on services
 Let’s begin with information on available services and supports: When first starting out,

I like to take a developmental approach which begins from birth to adulthood. As such, I

typically begin with early intervention services. As mandated by law, the early

intervention services system is available in all 50 states, as well as U.S. territories to

families of babies and toddlers with developmental delay and disabilities.

 Covered under Part-C of the Individuals with Disabilities Education Act (IDEA), the law

requires that babies and toddlers with developmental delays be identified and provided

services that help them to thrive and grow.

 However, the definition of developmental delay is broadly defined in federal terms, so it

is important that you determine your state’s particular definition of developmental

delay so that you can better understand your child and have a clear idea of what

services he/she may need when making your requests to providers and organizations

who provide the identified services.

 You can find out more about your State’s definition by going to the Early Childhood

Technical Assistance Center, otherwise known as the ECTA Center, at:

http://www.nectac.org/~pdfs/topics/earlyid/partc_elig_table.pdf

 One of the most requested pieces of information from moms/parents of children on the

spectrum is for daycare for their special needs child. Not too long ago, I found out about

two online caregiver/babysitting organizations that help parents find daycare and sitting

services for their special needs children among other services. One is called care.com,

and the other is called sittercity.com.

 Both organizations offer similar services such as helping parents find child care, special

needs care, tutoring, pet care, housekeeping, nannies, and senior care providers. If you

are having trouble finding a baby sitter, daycare, or nanny in your local area, it might be

worth looking into care.com or sittercity.com to see if you can find a match.

 Therapies: ABA, Relational, PCIT, Social skills training, OT and Speech. I have heard good

things and questionable things about each of these therapies, and truth be told, most of

what I hear is based on personal philosophy. Some people simply believe that one type

of therapy is better or worse than another because of the experiences they’ve had.

Some people believe that ABA therapy is dangerous, while others believe that it is the

best thing since man first landed on the moon.

 If you’d like to hear my in-depth take on each one of these, then just let me know by

contacting me through my social media sites or website and I can definitely provide you

with more information on each one.

 Most parents are familiar with speech and occupational therapies as their children have

probably been exposed to one or the other or will be in the future, but not every child

or family experiences ABA, relational therapy or PCIT. It really depends on the needs of

the family and the qualifications of the therapist.

 Educational/parenting techniques: The World Health Organization Parent Skills Training

program teaches parents how to facilitate the social and communication skills of

children on the autism spectrum and other developmental problems. Specific emphasis

is given to families in underserved communities. This intervention program is seen as a

first line tactic to help families deal with challenging behaviors while they wait for
 professional services and/or to complement professional services already being

provided.

 Reading/viewing materials: Many parents want to hear stories about other parents with

children similar to theirs. There are all kinds of books and resources out there, but some

of the most reputable and helpful reading materials I have found are books like “10

things every child with autism wishes you knew,” and “Chicken soup for the soul: Raising

kids on the spectrum,” and TV shows/films/documentaries like “Best kept secret,” “Life,

Animated,” “Autism: The Musical,” and “The good doctor.” Sesame street has also

introduced their first ever character with autism named Julia.

 How to promote child health and development: The National Institute of Mental Health

developed a parent’s guide to Autism Spectrum disorder as did Members of the

Psychological Services Department through the Cypress Fairbanks Independent School

District in Houston, TX to help parents understand their child’s diagnosis and develop a

practical plan to promote the child’s health and development. NIMH’s guide can be

found at: https://www.autism-watch.org and the Cypress Fairbank’s guide created by

members of the psychological services department can be found at:

https://www.cfisd.net/download_file/19064

 How to find community activities and transitional planning: Transitional planning,

according to IDEA (individuals with disabilities education act), is comprised of a

“coordinated set of activities” that is outcome-based, designed to prepare a child with a

disability for post-school living. That is, it is a system of services that may include
 postsecondary education, job training, community participation, and other independent

living activities that prepare the child for life after high school.

Things to consider when planning transitional services

 IDEA vs. The Rehabilitation Act and ADA

 Although all 3 Acts are federal laws, IDEA only applied to children ages 3-21 while

they are still in school.

 IDEA ensures that schools appropriately identify students with disabilities and

provide services utilizing the IEP process. IDEA also mandates that a transition plan

be established for the child by the age of 16.

 The Rehabilitation Act authorizes grant programs for vocational rehab, independent

living, and client assistance programs. Section 504 of the Rehabilitation Act protects

people with disabilities from discrimination with regard to employment, special

services, and public accommodations.

 The American with Disabilities Act (ADA) protects individuals with disabilities against

discrimination only if the disabled person could participate in the program or

perform the job with “reasonable accommodations.”

 Accommodations and services for disabled persons under the Rehabilitation Act and

ADA do not transfer automatically. Either the person with the disability or a legal

guardian/representative must request services.

 Transition plan needs to take into account individual strengths, needs, and interests,

and should focus on continued education, training, and independent living.

  When I first started receiving early intervention services for my son, I came in

contact with an organization that helped me to put together a transitional planning

portfolio.

 In the parent packet, there was a transitional planning leaflet that outlined the

recommended resources, services, and activities that I should pursue from

elementary through high school to ensure that my son would be prepared for

independent living. You can view the leaflet by going to this link:

https://ok.gov/odmhsas/documents/Oklahoma%20Secondary%20Transition%20Pla

nning%20Nov%202011.pdf

Family/social support

 Online Center for Parent Information and Resources: www.parentcenterhub.org

 There are 100+ parent training and information centers and community resources

centers in this database.

 Consider parent-to-parent agencies in your local area. Here in Oklahoma City, we have a

parent-to-parent support network called the Oklahoma Family Network (OFN) that

helps families by providing emotional support, resource navigation, and family

partnerships.

 What about information and referral sources? Every state has a developmental

disabilities council that provides information on training, service, and advocacy

programs for individuals with disabilities and their families.

 Online resource guides can be a tremendous source of information for learning about

services to support families of children with disabilities. Contact your state’s

 Developmental Disabilities Council to get information on the services you are looking

for.

 Don’t forget autism support groups. These can be face-to-face or online. You may have

to go through a few before you find one that you feel best suits your needs and

interests.

 Here in Oklahoma, we also have a specific autism information and referral network

called the Oklahoma Autism Network. This is where I learned about a program called

ConnectedKids which teaches parents how to use developmental and behavioral (ABA)

strategies with their child. The program focuses on equipping parents with the skills to

help increase their child’s social communication and engagement skills.

Respite

 Local programs (In Oklahoma City, we have a program called Sooner Success, which is

one of the more known resources for obtaining respite care.)

 Sittercity.com or Care.com

 The National Respite Network provides a locator database to help parents search for

trained and competent respite caregivers. You can find fact sheets and other valuable

information about respite on the site.

 Easter Seals programs (Here in Oklahoma City, our Easter Seals program was renamed

WovenLife, but it provides the same services as before, including therapy, training,

education and support services to individuals with autism and other disabilities.

 Hannah’s Promise – a local ministry in OKC area that provides respite care one evening a

month to help parents refresh and enjoy a few moments of personal time.
 Don’t forget family, friends, and trusted neighbors who could provide care a few hours a

weekend.

 Next week, we will jump into some re-framing exercises that help to turn our focus from

a “why me?” perspective to a more strengths-based approach.

 Looking forward to our time together next week. See you soon!