Early identification of children with special health care needs and early intervention services for these children and their families can have positive impacts on both the children's developmental outcomes and the family's life. But a critical first step is identifying that a child has or is at risk for a developmental delay or disability—especially during the first three to five years.
Families have shared stories about how they learned that their child has a disability or special health care need. Often it was a pediatrician, teacher, or child care provider who raised a concern about the child's development and helped the family find services and resources. However, other families did not have those supports and report wishing they had learned about their child's special needs earlier than they did.
Early screening is a way to monitor a young child's development and detect any possible delays or disorders. Screening is a simple procedure for parents to see how their child is reaching certain developmental milestones—basic skills such as moving, communicating, playing, and interacting with adults and other children. Health care providers, early childhood programs, and other agencies serving young children and families often provide screenings for children enrolled with them. If the screening shows that the child is not reaching these milestones at the age when most children do, a more in-depth evaluation by specialists may be recommended. There are also simple tools that parents can use to record their children's development and share with their health care provider.
The Centers for Disease Control and Prevention (CDC) has an initiative called "Learn the Signs. Act Early." There are free materials on the website (www.cdc.gov/ncbddd/actearly/index.html) for families, healthcare providers, and early childhood educators. Resources for parents include developmental milestones charts and tools for children from three months to five years of age, information on developmental screening, and suggestions for sharing concerns with the child's doctor or other health care provider. There are also links to other websites that have additional resources specifically for families.
First Signs is a national non-profit organization that was founded by a parent of a child diagnosed with autism and has an advisory board that includes many nationally known clinicians and professionals. The mission of First Signs is to "to ensure the best developmental outcome for every child by promoting awareness regarding the most important and often overlooked aspects of development: social, emotional, and communication." Detailed information about screening, developmental milestones, sharing concerns with physicians and parents, and print and web resources can be found on the First Signs website at http://www.firstsigns.org/index.html.
The American Academy of Pediatricians (AAP) is promoting early developmental screening at children's well-child care visits. AAP has a website titled "Healthy Children" (www.healthychildren.org) that has a lot of information about children's development at different ages from birth through 21 years.
The High Risk Infant Interagency Council (HRIIC) also has developmental checklists available in English, Spanish, and Chinese. For free copies please contact HRIIC at email@example.com or 415/206-7743.
On May 17th the Parent Mentor Program (PMP) graduated its most recent group of Parent Mentor volunteers from the Special Education Training series. Twelve (12) English speaking Mentors and five (5) Spanish speaking Mentors participated in the 8 month series that began in September and finished this May with a party to celebrate their accomplishments. The Special Education series covered various areas including Evaluations and Assessments, the IEP Process, and Related Services. And on April 19th the PMP hosted a panel of professionals that covered IDEA, Section 504 and ADA for the audience of Parent Mentors.
In June we had our Parent-to-Parent (P2P) portion of our training – June 25th (English) and June 8th and 15th (Spanish). During this training we talked about communication skills, active listening and what it means to be a Support for Families Parent Mentor. Our volunteer Mentors have been an integral part of our organization and a benefit to our families who have utilized their support. In September we will again begin the eight month Special Education Training series using CASE/PAI's Rights and Responsibilities handbook and other resources to help our new Parent Mentors gain knowledge about the special education environment.
All parents want their children to receive the best education possible. One way to help your child succeed is to know if the school is using effective teaching and intervention practices. But how can schools and parents know if a practice is effective? One method is to see if there is any research or "evidence" to prove that the practice works. This handout explains the meaning of "evidence-based practices" and why they are important. It also lists resources where parents can learn more.
What is an Evidence-Based Practice?
Under IDEA, instruction is individualized based on the student's needs. That's why it is especially important that the knowledge and experience of professionals and parents are also considered when deciding how to teach a student with disabilities. Professionals and parents should know about instructional practices and interventions that have been shown by research to be most effective. These research-based practices should then be matched with a student's unique needs and skills when developing a student's Individualized Education Program (IEP). It is important to record what works so that evidence can emerge over time that offers new insights into teaching and learning for students with disabilities.
How Do I Help Ensure My Child is Receiving Evidence-Based Instruction?
Where Do I Find Information on Evidence-Based Practices?
Cook, B.G., Tankersley, M., & Landrum, T.J. (2009). Determining evidence-based practices in special education. Council for Exceptional Children, 75(3), 365-383.
Gersten, R. (2009). Types of research and their roles in improvement of practice. National Center for Learning Disabilities. Accessed online February 9, 2011 at: http://www.ncld.org/at-school/especially-for-teachers/effective-teaching-practices/types-of-research-and-their-roles-in-improvement-of-practice.
Turnbull, A., et al. (2010). Knowledge to action guides: Preparing families to be partners in making educational decisions. Teaching Exceptional Children, 42(3), 42-53.
U.S. Department of Education, Institute of Education Sciences, National Center for Education Evaluation and Regional Assistance. (2003). Prepared by the Coalition for Evidence-Based Policy. Identifying and Implementing Educational Practices Supported by Rigorous Evidence: A User-Friendly Guide. Accessed online February 9, 2011 at: http://www2.ed.gov/rschstat/research/ pubs/rigorousevid/index.html.
This document was supported by the U.S. Department of Education, Office of Special Education Programs Cooperative Agreement H328R080012. The contents of this document do not necessarily reflect the views or policies of the U.S. Department of Education, nor does mention of other organizations imply endorsement by those organizations or the U.S. Government. This document is also available on the ALLIANCE National Parent Technical Assistance Center's website at: http://parentcenternetwork.org/national.
by Beth Ohanneson, M.S., M.F.T and Julia Martin, Founder of SIKidSF, A Support Group for Parents of Kids with Sensory Processing Disorder
Sensory parents have a big job. Sensory children carry an extra burden, and their parents shoulder a major part of that load. Rather than baseball or ballet, we are busy arranging assessments, Occupational Therapy (OT) programs, advocating for school accommodations, reading the latest research, repairing social upheavals, and driving our kids to therapists and specialists. With so much focus on outside treatment for children, parents' influence and needs are often overlooked.
Parents' state of mind is crucial to the wellbeing of the family system. Parents feel ineffective when a child's sensory meltdowns and shutdowns set the tone within a family. Siblings get less attention and marriages are strained. The whole family system can become overwhelmed and go off track. This is hardly the happy family life we dreamed of!
Children affect parents' neurology too! Members of a family affect each other. Parents' minds and brains are designed to be affected by their children, not just the other way around. When our kids are thriving, we feel happy and proud. When they are suffering, we suffer too. Parents regularly metabolize sensory input from their children; it's part of the job.
Parenting is as important as OT. Parents contribute more sensory input to their children than any other person in their child's life: more than therapists, teachers or friends. Parents hold and comfort, wash, feed, play with, read to and tuck in. They calm, enliven and discipline through tone of voice, loving eye contact, respectful touch, and compassionate listening offered after nightmares or hurt feelings on the playground. These interactions offer the type of sensory input that helps children feel safe, in control of themselves and connected to others. At best, this type of compassionate parenting helps children develop a healthy sense of Self. Bodily sensations inform feelings states, which lead to clear thinking, collaborative problem solving and good judgment.
Compassionate parenting can go a long way to helping children integrate sensory differences. A parent's relationship with their children will directly affect the neurological development of self-regulation, executive functioning, and attachment styles. However, when parents of SPD kids become chronically overwhelmed, their kids are at risk.
Compassion fatigue: It's nearly impossible to remain resilient when you feel exhausted, overburdened, burnt out, and depressed. The warm, flexible attentiveness that we associate with good parenting may be replaced with an anxious parent, dulled by feelings of isolation and ineffectiveness. Instead of enjoying and appreciating time with our children, parents of SPD kids often find themselves bracing for the next sensory assault. Parents struggle to find ways to connect with their children, while hoping that the next meltdown might not last more than an hour, and we might enjoy even one of the things we planned for that day.
Parents of SPD kids often feel like failures. Although we try valiantly to help our struggling kids, there is often little reward for the many long years of hard work. Many factors contribute to the strain on the SPD parent child-relationship:
The chronic strain of raising a child with SPD takes a high toll. Even the heartiest of parent's can become emotionally depleted, trudging from day to day, not noticing or enjoying their children or their life. Sadly, depressed and anxious parents are more likely to offer negative sensory input, which further agitates and frightens their struggling child. This is heartbreaking for parents and children.
Support is crucial. SPD parents need support to hold steady emotionally. With support, we can raise children who feel confident and self-aware. With support, we can feel proud of how we have risen to the challenge of parenting our sensational kids. Below are ways that SF Bay Area SPD Parents can find support:
Find someone to talk to. Having a person who understands what you are going through and is willing to listen is critical. Having someone to talk to about the stress your family is under is a great way to offload negative feelings about yourself, your child, and your circumstances. Choose someone familiar with SPD and ready to listen.
Take time do the things you enjoy as if it were a medical prescription! Feelings of happiness produce neurotransmitters that combat stress. Find something you like to do and make it a priority. This is not a sprint; this is a marathon and you'll need to pace yourself.
See a professional - Beth Ohanneson, M.S., M.F.T. (415-564-0782) offers 8-week, depth oriented, small group sessions for parents of children with SPD based on the Hand-in-Hand Parenting by Connection Approach. Included are specific tools for expanding parent support, as well as parenting strategies aimed at building emotional understanding, connection and safety within SPD families.
Join a Support Group. SikidsSF is a free resource for SF Bay Area Parents of SPD kids. We share sensory tools, resources and specialists, every day obstacles and successes. There is a monthly in-person meeting for parents. For more information visit SIKidSF.com.
We can't take away the burden,
One of the most important parts of my job at Support for Families is finding energetic, dedicated and loyal volunteers in the community to foster a healthy volunteer program. We depend on individuals and family members like you to introduce us to people in the community seeking volunteer opportunities, such as those in corporations. These collaborations are important for Support for Families, by opening doors to quality volunteers, but also benefit the companies by introducing them to resources available in their community and offering enriching experiences for employees.
Support for Families is fortunate to have formed a partnership with PG&E and has been able to recruit volunteers from many of the existing volunteer groups there, such as "Woman's Network", "Access Employee Resource Group", "The Green Team" and "The Pride Network" for our family events, such as the "The Winter Ice Skating party" and "Access to Adventure." Corporate relationships help us to further our mission of offering fun recreational opportunities to families and enable us to stretch our resources to their fullest potential.
If you work for a company (large or small) who would like to get their employees involved, please contact me to tell me about it! And, thanks to all our volunteers who work tirelessly to further our mission of helping families.
Kathleen can be contacted via email firstname.lastname@example.org she welcomes all who wish to volunteer at Support for Families.
Join us Aquarium of the Bay for our annual Halloween party on Saturday evening, October 29, 2011 from 5:00-8:00 p.m. Make crafts and enjoy a light dinner in the party room, and explore the aquarium all for free! The Aquarium staff will offer "close encounters" of some of the creatures that live there! Don't forget to come in costume! Discounted parking passes will be available at the Aquarium. Register by calling 415-920-5040. Space is limited, call early!
Submitted by Katy Franklin, Chair of the SFUSD Community Advisory Committee (CAC) for Special Education
On June 14, 2011, the San Francisco Unified School District's Board of Education (BOE) voted to approve Board Policy P5101: Student Assignment.
The section relating to Special Education states:
The first sentence is a long-awaited step in finally bringing SFUSD policy in compliance with the Individuals with Disabilities Education Act (I.D.E.A.). I.D.E.A. requires School Districts to provide formal, written offers of placement to students receiving special education services. Courts have interpreted that those offers must be very specific, that "placement" means actual school site, and not just a list of services.
What is of concern to CAC members is how the second sentence in the BOE policy directly contradicts the first, and simply restates SFUSD's current practice of deciding most special education school assignments by lottery. The "I" in "IEP" stands for "Individualized", and there is nothing "individualized" about placements determined by lottery. SFUSD policy promises that: "To the extent possible (…) the student assignment process used to assign general education students will be used to assign special education students" but the reality is that SFUSD's school assignment system is fraught with bias.
Another segment of SFUSD's new enrollment system mandates that, starting in 2017, students at certain elementary schools will "feed" into pre-assigned middle schools. During enrollment periods prior to 2017, feeder school designations will be a tie breaking factor in the lottery system. After 2017, parents who are unhappy with their children's automatic Middle School assignment may still try to apply to other middle schools.
SFUSD claims that the feeder system will make school assignment more equitable and create virtual "K-8's" (kindergarten through 8th grade schools) and strengthen schools by "keeping communities together." While this sounds like an especially good idea for students receiving special education services -- students enrolled in self-contained Special Day Classes (SDCs) do not seem to have been considered part of the school communities, because in numerous instances -- the type of SDC classrooms students are enrolled in, in elementary schools -- are not available at the designated middle schools. How will students enrolled in SDCs feel like part of a community when they cannot attend the school that all other students in the school will attend?
District administrators have asserted:"One of the main goals of the SFUSD special education redesign is the creation of more thoughtful, deliberate, and cohesive "pathways" for students who receive special education services." SFUSD is promoting the use of more inclusive practices in the district, and at school sites; so parents would appreciate it if administrators would be more mindful of how the decisions they make for students in general education affect children of students receiving special education services. Special Education classes will have to be relocated to "fit into" the plans SFUSD has made for students in General Education, and the "pathways" obviously do not include students in SDCs.