Ask About their Experiences

Just like anyone, start where they are.  Ask about their experiences, see things from their perspective.  Don’t try and steer or correct, just listen and take a genuine interest.  This leads to connection, and the critically important knowledge they are valuable and lovable.  This can be more challenging for parents when the child’s experiences are intensely repetitive or rigid, or even feel counterproductive (i.e., blaming others).  Perspective building will come, but first, we need to take time to encourage and validate before they can take on alternative points of views.

Provide Concrete Ideas for What to Do

Children with ASD often have difficulty coming up with ideas on how to connect with the peers in an appropriate manner.  They do not have a “menu” of choices that will work, so they may need more concrete, direct input from adults. This may even include practicing before a big event, such as the first day of school or a play date, as well as recapping after the event of what went well and what could be changed for next time.  Often, reading others can be difficult so they may even be unsure of how well things went, so practice and processing will be helpful.

Use Visuals/Multimedia Examples

Talking things out is certainly helpful for some, but like all of us, learning styles vary.  It is known that visuals can be particularly helpful for those on the spectrum, and reducing verbal conversational demand can take the pressure off, allowing more brain space for processing.  I always keep drawing materials near so I can write or draw concepts as that can be hugely helpful for clarity. Video sites, such as YouTube, can be a rich resource for positive socio-emotional tools that capture the attention of all children.

Connect with Empathy

Like all people, those on the spectrum have big emotions.  Anecdotally in my work, I find that at times, people on the spectrum display even bigger feelings, stemming from a variety of factors.  A few examples being — feelings words can be hard to understand and access which can make regulating a challenge; executive functioning can be delayed, which can impact emotion regulation; senses can be hyper-attuned; and/or physical discomfort can be magnified/sleep patterns are often interrupted which can certainly impact moods.  All of this in conjunction with living in a world built on cooperation and social connection that at times does not make total sense can be a challenge. Whatever the reason, a key way to connect and try and relate is through empathy. Letting the child know that they are not alone and you are with them in their feelings can be life-changing. Brene Brown has a wonderful video on empathy that succinctly explains how to achieve it and why it’s so critical:

Beware of Shame

A few years ago, I attended a lecture given by Jennifer Cook O’Toole, an adult with Aspergers Syndrome. She said something that will forever stay with me — “We won’t know when we step on your toes, but boy will we feel so bad when we do.” In my years since, in working with and talking with people on the spectrum, this is has been confirmed as true far more often than not.  Many on the spectrum tend to be unaware of hurting others, but once they realize they’ve done it, they feel intense guilt and shame for doing so.  Sometimes this shame is hidden behind blame (often in younger children, they will blame others because the shame they feel is too painful), but shame and embarrassment is often underlying once they realize the hurt they have caused.  Shame is a major source of disconnection from others and can lead us to feel unworthy and unlovable. Thus, as family members and therapists, it is our job to help children recognize the difference between inappropriate actions and changing behavior vs. being bad as a person. Beware of lecturing and work together to assure your child that they do not need to feel shame and that they can build the skills to move forward together with your help.

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While traditional treatments for LDs highlight academic remediation, family therapy can address underlying challenges that many families face. Families often put a lot of time and energy into finding successful academic supports for their children. While some children perform better in school with the assistance of these services, communication and relationship challenges often continue at home.  For example, many families describe home as a battleground when trying to complete homework.  This is not surprising because  children with LDs often perceive themselves as inadequate and their parents believe they are failing in their role as parents. This dynamic can set up an unfortunate cycle of negative behavior. A certain “dance” between child and parent occurs; the more parents push homework, the more resistance they encounter from their child/teenager. And the less homework the child/teen gets done, the more parents push. Siblings often can get caught somewhere in the middle; they may try to play the “peace-maker” in these battles, or may feel jealous of the extra attention his/her sister or brother might get due to him/her having a  LD.

The good news is that these unproductive cycles can be broken. Family therapy can assist all family members in feeling that their concerns are being heard and can remove “blame” from a specific family member (it is often the child/teen with an LD who holds- or at least perceives him/herself to hold- the “problem” label). When challenges are approached from a family, rather than individual, perspective it often feels less threatening to each family member.

Family therapy can facilitate understanding of the emotional toll that a LD takes on each family member.  Parents can come to understand the breadth and depth of their children’s feelings about their learning differences and may realize that their child  has been experiencing enormous frustration, discouragement, and feelings of worthlessness.  Conversely, children with LDs can become aware of how parents and siblings feel about the LD, and how it can affect the family as a whole. Family therapy not only helps bring many of these feelings to the surface, it also helps each family member embrace their own unique strengths and validate what each member adds to the family system.

In addition to generating a better understanding of thoughts and feelings, family therapy can help family members learn to improve their communication and problem-solving skills.  The therapist can provide the family with concrete strategies to address specific challenges such as homework battles.  Parents can learn  tools to encourage, guide, support, and set limits so that children with LDs can not only meet their challenges, but also build their sense of self-esteem and self-worth, and gain the discipline and confidence to keep going in the face of challenges.

As a family therapist, I feel fortunate to witness the healing dialogue that takes place between a child/teen with a LD and his/her family when the learning difference is addressed within a family setting. As family therapist Peter Steinglass, M.D., Executive Director of the Ackerman Institute for the Family, once said, “in the end the most powerful thing that happens in family therapy is that the family sits together in a room and hears each other speaking in a completely new way.”

–Posted by Kathy Voglmayr

Jonah Green and Associates, LLC provides therapy for children, teens, families, and adults in North Bethesda, Maryland, as well as for clients in Chevy Chase, Montgomery County, Washington, DC, and the surrounding areas.

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As graduation season approaches, many young adults feel excited to enter a new phase of life. For transitioning youth with disabilities and their families, this excitement is often coupled with trepidation and uncertainty. Many students have become accustomed to secure, structured school environments. Some have attended the same school program for several years, so they are used to the same services, supports, and staff.

The experience of adult services can represent a sharp departure from this familiar routine. In place of one program, many young people need to obtain services from multiple organizations, each with their own set of protocols and norms. The transition can be bumpy, even in the best of circumstances; still, families and youths can manage these bumps, especially if they apply certain communication strategies with their new agencies. The following tips can help young people and their families to get off on a positive start with their service providers:
• Find out the contact information for the staff and supervisor who will be working with the individual, and with whom you should be in regular communication.
• Ask each agency if you can to meet in advance with the people who will be working directly with the individual. It is possible that agencies will not know who these people will be this until close to the start date.
• Ask agency contacts about the best time and way (e.g., email vs. phone) to communicate both general questions and specific concerns. Re-evaluate your modes of communication on regular basis to ensure that things continue to run smoothly.
• Ask the staff person who is working directly with the individual if you can meet at mutually agreed upon times to speak about progress. Unless there is an emergency, try to save all questions and concerns for these designated times.
• Ask to use a communication log/book to jot down simple updates and requests. Avoid using this communication as a means to address concerns.
• If you have a specific concern, raise it promptly, but give agencies a reasonable amount of time to evaluate the situation before they respond.
• When discussing new strategies with provider Agencies, keep in mind that what worked in the school or home setting may not effective or realistic in the new setting.
• Try to work out issues with your contact person directly. If you have repeated difficulties with communication and/or cannot resolve important issues, consider involving the Supervisory staff.
• Keep the Resource/Service Coordinator in the loop of communication when discussing major concerns.
• To streamline communication between multiple service providers, make sure to sign a consent form so that all parties can speak openly to each other on behalf of the individual receiving services.

• Ask the school if there is a particular teacher/staff who can give input toward goals or problem solving to the new providers. Make sure that provider agencies have that school staff’s contact information and a consent form to speak about the individual.
As you implement these strategies, it is useful to remember that issues and problems are common for many individuals at nearly all agencies as individuals adjust. The number of initial concerns is not always the best indicator as to whether an program or agency is a good fit; a better measure is how agencies and families can address and resolve the problems that arise. If families endeavor to develop a cooperative, collaborative partnership with agencies by utilizing the communication tips outlined above, they will become an essential partner in solving problems and forging a brighter future for their young adult in transition.

Rubin, LCSW-C, is a Licensed Clinical Social Worker in Montgomery County who has recently started Disability Support Solutions, which focuses on helping families that inc with disabilities to design the independent life they imagine. Her services include transition and later life planning, case management, entitlement and funding exploration, mediation of existing services, and advocating for new services. Rebecca has offices in Silver Spring and Rockville, but can also meet with families in their home or other convenient community settings. Please visit Rebecca at www.disabilitysupportsolutions.com for more information.

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In the Montgomery County Public School System in Maryland, the first formal step is the Collaborative Problem Solving (CPS) team meeting (Other school systems might have different names for this procedure). During the consultation, school staff and parents develop goals, specify interventions, and set up a system for monitoring progress. After a determined period of time the teacher will assess whether the goals have been achieved, and will review the results with parents.

If your child continues to struggle, the next step is for parents and staff to hold a Grade Level/Content Team Consultation. This meeting is more formal and comprehensive version than the CPS meeting; the classroom teacher will consult with other key player’s in your child’s education, and recommends goal and interventions. If your child meets the goals set in the meeting after a predetermined amount of time, the process ends here.

If your child continues to face challenges, either you or school staff can ask for an Educational Management Team (EMT) meeting. During an EMT meeting the staff will look back at your child’s entire school performance, and review interventions that the school has applied. Team members (which may include one or more of your child’s teachers, the school guidance counselor and a school administrator) will work with parents to develop goals and interventions. Once the interventions are complete and the school has had a chance to collect and analyze the intervention data, the team will review progress, and may revise the intervention plan. The EMT may meet multiple times as they attempt to address your child’s learning challenges.

It may come to a point where you or your child’s teachers suspect that your child has a learning disability. If you suspect this, you may request a Screening Meeting for the Initial Eligibility Process for Special Education. If a child is found to have a learning disability, they are entitled to an Individualized Education Program which will help meet the unique needs of your child. The IEP team has 90 days from the initial referral to complete the evaluation process. If you would like to request a screening for IEP eligibility, it is recommended that you do so in writing. The school will then schedule a screening meeting within 30 days. In the screening meeting a worksheet will be filled out which contains an educational history, current teacher reports, classroom observations and a parent questionnaire. If the IEP team does not suspect a disability they will refer the student to an EMT meeting or continue the recommendations of the previous EMT.

If the team does suspect a disability, they will determine what additional information, if any, is needed to determine your child’s eligibility for an IEP. As parents you will be asked to sign an authorization for assessment. The IEP team has 60 days from the date the parent signs the authorization, or 90 days from the referral date, to complete their assessments. During this process you may obtain testing from an outside source that may be considered by the team. Once the meeting is held, the team reviews all assessment data and relevant information. If your child is not found eligible for special education and related services, the IEP team must document the basis for their decision, and your child will be referred back to the EMT process. If your child is eligible for special education services, the IEP team will has to develop a plan for intervention within 30 days of the eligibility decision.

Once your child has received an IEP, the school will hold annual reviews to review and update the plan. There will also be a triennial review to determine if more assessment is needed to determine further eligibility. At any point a parent can ask for a periodic review if there are concerns that an issue needs to be revisited.

If the IEP team determines that your child does have a disability but does not require special education, they will refer your child to a school based 504 team. A 504 plan spells out modifications and accommodations for students with disabilities so that they will be able to perform at the same level as their classmates. The disabilities covered under a 504 plan include physical or mental impairments which substantially limit one or more major life activities. No formalized testing is required for a 504 plan. The 504 team will look at grades over the past several years, teacher’s reports, information from parents or other agencies, state assessment scores or other school administered tests, observations, discipline reports, attendance records, health records and adaptive behavior information. Once a 504 plan is in place it will be re-evaluated on a yearly basis. It also may be revised at any time during the school year if needed.

A positive relationship with your child’s school staff is the critical underpinning of effective advocacy. In addition, an understanding of school processes for academic support can be very helpful in helping your child obtain the supports he or she needs to have a successful academic career.

Resources:

1) Montgomery County Public Schools. Problem Solving for Student Success. Collaborative Problem-Solving Guidelines. Educational Team Management Guidelines. Special Education Procedures. Retrieved from: http://www.montgomeryschoolsmd.org/departments/studentservices/
pdf/ProblemSolvingForStudentSuccesspdf0910.pdf

2) US Department of Health and Human Services. Your Rights Under Section 504 of the Rehabilitation Act. Retrieved from:http://www.hhs.gov/ocr/civilrights/resources/factsheets/504.pdf

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Parents can take the following steps to further their children’s academic progress:

· Establish regular routines.  Include time for studying, household chores, meals, and a regular bedtime.

· Show interest. Inquire about his or her assignments and progress; stay in touch with school staff.

· Monitor out-of-school activities.  Set limits on TV time; arrange for productive after school activities, including supervised care for younger children.

· Model the value of learning, self-discipline, and hard work. Demonstrate that achievement comes from hard work by showing the work you put into tasks and the success that it yields.

· Emphasize learning and effort as opposed to external rewards or grades. Promote long-term success by encouraging your child to focus on the material itself. Use grades to help your child measure progress and decide what material needs more focus.  Avoid offering too many rewards for academic achievement.

· Express high but realistic expectations. Set appropriate goals for your child’s age and ability.  Recognize his or her talents and inform friends and family when he is demonstrating persistence and hard work.

· Encourage reading, writing and discussion among family members. Read with your children, and discuss what you read!

· Encourage your child’s “ownership” of his education. Even as you promote academic success, make sure that you are clear that schoolwork is his job and his alone.  Refrain from “nagging” about homework; set up logical consequences, such as less screen time, for failure to finish work.

Involving yourself in the school community can also benefit your child.  Communicating regularly with the school, getting to know teachers, attending back to school nights, and even becoming an active member of the Parent Teacher Association (PTA) can all help your monitor your child’s academic development and advocate effectively, generating further success.

If a child is having difficulty in a particular subject, tutoring can help.  Many times the schools provide tutoring, but if they do not, you can also find tutors privately or through community organizations.  A school’s PTA is usually a great link to tutoring resources.

Resources:

Henderson, A., et. Al. A New Wave of Evidence: The Impact of School, Family, and Community Connections on Student Achievement, SEDL: 2002

National PTA. PTA Position Statement on Parent Involvement [Data file]. Retrieved from

http://www.pta.org/topic_pta_position_statement_on_parent_involvement.asp (2010)

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