The relationship factor: when special needs challenge a household

The relationship factor: when special needs challenge a household

Written by: Cindy N. Ariel for http://www.autismsupportnetwork.com/

Becoming a parent for the first time changes our identity forever. There is a balancing act between caring for the needs of children and putting time and effort into the maintenance and growth of ourselves and our relationships. Frequently we must redefine our values and relationships with others. This transition in the development of family life is challenged even further by disability or chronic illness. "There is a strain on any marriage whenever a baby is sick. And we always have a sick baby," according to Josh Greenfield, the father of a child with autism, in A Child Called Noah (1970).

The kind of chronic stress that raising a child with special needs entails can affect relationships at their weakest points. This is just as true for families who have "volunteered" by adopting children with special needs or providing a foster home. According to the U.S. Census Bureau (2000), 47% of all first marriages fail and 57% of all marriages end in divorce. Although the findings are inconsistent, there is general consensus among the experts that while the divorce rates are comparable, there appears to be more reported marital distress among families of children with special needs (Seligman and Darling, Ordinary Families, Special Children, 1997).

Together you and your partner dreamed of a healthy child--now you face a life very different from what you imagined. Your overwhelming feelings, both individually and combined, are normal and natural in the situation but very difficult nonetheless. The needs of the children are often complex and illusive.

Searching to find the cause of children's developmental problems and the best treatment can be a long hard journey. Getting wrapped up in the stresses and strains of everyday life, relationships inevitably suffer from lack of attention. Communication problems, lack of time and energy for personal, marital, and family activities, and social isolation affect many families. When a disability or chronic illness is discovered, powerful emotions surface and may put relationships on trial. How can couples understand each other in the wake of such devastating pain?

For a relationship that is fragile or unstable, disability can be "the last straw." On the other hand, challenging life events can serve as catalysts for change. Some families disintegrate while others thrive despite their hardships. People can emerge from crisis revitalized and enriched. Hope for relationships can really spring from the crises people experience when their child has a disability.

If you and your partner are parenting a child with special needs, here are some suggestions to help your relationship:

Work to understand each other's needs.

Family life can be a test of love and resilience, so taking good notes and working to understand each other's wants and needs are vital to the success and survival of an intimate relationship. Life has veered sharply from what you had expected it to be. Try not to blame each other for the situation. It takes time to sort this stuff out. Be kind to yourself and each other about how difficult this can be.

Spend alone time together.

While the issues in any particular relationship are complex, it can be a good start to plan time together alone, even if only for a few hours. In study after study, people who report their marriages to be satisfying describe their spouses as their best friends, and people who are best friends have activities that they enjoy together. Most people get married, in large part, because they enjoy each other and make each other feel good. Who would have married their spouse if the last time they relaxed and/or had fun together was months ago? A close bond between partners can help parents through the rough spots. You can start with sharing a cup of coffee or tea, dinner out, or a movie or concert.

Take care of your individual selves.

Your children have conditions that may require lots of care and supervision. In the struggle to advocate for our children's needs, our own needs as individuals and as couples get lost. Many people stop focusing on their marriage, but this never helps. As hard as it may sound at first, start to think about taking care of yourself and adding some fun and enjoyment into your life even though it can take a long time for this to feel okay. Take some time for yourself doing things you enjoy. This can be anything from physical exercise or journaling to just grabbing time to read the newspaper or a good book.

Reach out.

When possible share the responsibilities at home by working together on chores, childcare, and education. It is helpful when couples both work to learn about their child's disability, prepare for and attend IEP meetings, etc. Get involved in the special needs community if you can. There's so much to manage everyday that reaching out to your partner, relatives or friends can help lessen the burden.

Communicate.

When a person is in pain he or she may withdraw, or become frustrated and angry. It's hard to talk about something we have no power to change or fix. At times the reactions of couples can become polarized or opposite. For example, one may notice problems in the child and tend to worry and feel negative while the other holds hope and optimism that in time everything will be fine. Try to consider all your feelings toward your child-- both positive and negative-- and discuss issues in ways that will help both of you feel understood and find solutions to problems. In general, the way out requires working through the painful feelings with one's partner and arriving at some form of joint acceptance and effective co- parenting strategies.

Seek assistance.

Sometimes a mental health professional (a social worker, psychologist or psychiatrist) can be helpful to you in understanding the needs of the children, yourself and your marriage. Some people are reluctant to take this step, but when it becomes hard to function from day to day, this kind of help may be in order. Just as you would consult more than one specialist for your child if necessary, do likewise for yourself. If your partner is too discouraged, then start by yourself. Sometimes a change in one partner changes the chemistry of the situation for the better. It is intelligent and wise to acknowledge the needs of yourself and your marriage over time as well as your child's needs. Your special family is worth it!

In spite of grim statistics and feelings of being overwhelmed, having a disability in the family can have a positive impact as well. Here are some suggestions to offer comfort and direction for couples as well as singles who are parenting a child with special needs:

1.         Communication is key, so

            a.         Resist the tendency to blame

            b.         Ask for what you need from others; also take good notes about your partner's needs

            c.         Listen actively and with compassion to each other; tell your partner what he or she is      

                       doing right.

2.         Add some fun and enjoyment in your life-- alone and with your partner. If you worry too              much about leaving your child with someone else, take your beeper or cell phone.

3.         It helps to be as active as you are comfortable being in the community as a whole and in the                 

            special education community in particular.

4.         Exercise-- almost any form of exercise will lift your sagging spirits if you do a form of         

            exercise that you enjoy and do it regularly.

5.         Journaling-- writing down thoughts and feelings and experiences is helpful for many of us 

            trying to put things into perspective.

6.         Support groups-- It is often helpful to share experiences, thoughts and feelings with others who 

            are in the "same boat" and can understand.

7.         Break problems down into more manageable pieces.

8.         Remember that you are both on the same parenting team-- not competing or fighting          

            against each other.

9.         Seek professional guidance when necessary. It is not a sign of weakness to seek help when you 

            need it. On the contrary, it is wise to think of your needs as well as those of your children.

10.       Keep in mind that a hard life can still be a good life!

Written by;

Cindy N. Ariel, Ph.D. and Robert A. Naseef, Ph.D. are psychologists who specialize in helping couples cope with special needs in their family (www.alternativechoices.com). They are the co-editors of "Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom" Naseef is also the author of the highly acclaimed book, Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability

Read more: http://www.autismsupportnetwork.com/news/relationship-factor-when-special-needs-challenge-household-133245#ixzz2WU3aC300

“The Transition into Summer”

“The Transition into Summer”, by Esther B. Hess, Ph.D.

Most developmental specialists concentrate on advising parents how to help their child with the challenges preparing for the transition back to school with little to no mention on the difficulties that our children face with the ‘freedoms’ supposedly offered through the lazy days of summer. The truth is that the same developmental lags that account for the struggles in September are equally responsible for the melt downs in June. And much like in early fall, I suggest that summer can be made into an enjoyable experience, if parents take the time to create a plan that offers stability and certainty for their youngsters with special needs.

1) If your school district’s budget permits, check out summer school options. While a scaled down program and typically new classroom might initially confuse children on the spectrum, ultimately our kids are relieved to continue within the rhythm of the academic year.

2) Look for a camp program that fits your child’s strengths. If your child is able to navigate with typical peers, summer might be an ideal time to enlarge your child’s inclusion possibilities. Explore programs that your child has an interest in (animal themed, science minded, etc.) and check to see if the camp’s policy encourages attendance for children with developmental differences.

3) If you plan to travel during the summer, pick a destination and stay a while to let your child get used to the new environment. Touring is stressful for most people, but for children with autism, navigating numerous airports and getting use to new hotels can feel nightmarish. If you do feel that your child is ready to ‘see the world’, let them prepare with you a travel book of different places and activities that they will be exposed to, so that a social story (check out www.socialstories.com) can be created to help them prepare for each upcoming destination. Don’t forget to schedule numerous breaks in the day to give your child a chance to regroup and reorient before the next activity.

4) Beyond transition concerns, the underlying neurological issues that create challenges for our children on the spectrum do not go away in the summer. Create a summer program that takes advantage of therapeutic opportunities by considering the addition of an intervention that you had put off during the school year due to your child’s crowded schedule. For example, therapeutic horseback riding is great way to help with awareness of others, motor planning and your child’s posture control, while social skills groups give opportunities to practice the tough task of making and keeping friends, while keeping other people’s perspectives in mind.

5) Make a regular play date schedule. Not only do our children learn valuable skills by figuring out how to navigate with peers, but also informal social gatherings can offer parents and neuro-typical peers support and camaraderie.

By taking the time to thoughtfully plan ahead, parents can support the transitional challenges of our special needs kids and ‘take the bite’ out of the dog days of summer. Enjoy –and don't forget the sunscreen! Esther B. Hess, Ph.D., Executive Director, Center for the Developing Mind. For more information check out http://www.centerforthedevelopingmind.com/.

“Ten steps towards supporting appropriate behavior” (for Students with Asperger’s Syndrome)

“Ten steps towards supporting appropriate behavior”  (for Students with Asperger’s Syndrome)

written by Dr. Cathy Pratt

Challenging behaviors are frequently the primary obstacle in supporting students with Asperger's Syndrome (AS). While there are few published studies to direct educators towards the most effective behavioral approaches for these students, it appears most evident (given the heterogeneity among these individuals) that effective behavioral support requires highly individualized practices that address the primary areas of difficulty in social understanding and interactions, pragmatic communication, managing anxiety, preferences for sameness and rules, and ritualistic behaviors. While the specific elements of a positive behavioral support program will vary from student to student, the following ten steps will go a long way in assuring that schools are working towards achieving the best outcomes on behalf of their students.

Understand the characteristics of Asperger’s Syndrome that may influence a student’s ability to learn and function in the school environment.

It is important for those involved to understand the idiosyncratic nature of Asperger’s Syndrome and to consider problematic behaviors in light of the common characteristics associated with this disability.

Following are some general characteristics as described by Williams (1995):

•Insistence on sameness: easily overwhelmed by minimal changes in routines, sensitive to environmental stressors, preference for rituals.

•Impairment in social interactions: difficulty understanding the "rules" of interaction, poor comprehension of jokes and metaphor, pedantic speaking style.

•Restricted range of social competence: preoccupation with singular topics such as train schedules or maps, asking repetitive questions about circumscribed topics, obsessively collecting items.

•Inattention: poor organizational skills, easily distracted, focused on irrelevant stimuli, difficulty learning in group contexts.

•Poor motor coordination: slow clerical speed, clumsy gait, unsuccessful in games involving motor skills.

•Academic difficulties: restricted problem solving skills, literal thinking, deficiencies with abstract reasoning.

•Emotional vulnerability: low self-esteem, easily overwhelmed, poor coping with stressors, self-critical.

Acknowledge that behavior serves a function, is related to context, and is a form of communication.

Effective behavioral support is contingent on understanding the student, the context in which he/she operates, and the reason(s) for behavior. In order to effectively adopt a functional behavioral assessment approach, several assumptions about behavior must be regarded as valid.

•The first assumption is that behavior is functional. In other words, it serves a purpose(s). The purpose or function of the behavior may be highly idiosyncratic and understood only from the perspective of the individual with Asperger's Syndrome. It is important to remember that individuals with Asperger’s Syndrome generally do not have a behavioral intent to disrupt educational settings, but instead problematic behaviors may arise from other needs, for example, self-protection in stressful situations.

•The second assumption is that behavior has communicative value (if not specific intent). Remember that individuals with Asperger’s Syndrome experience pragmatic communication difficulties. While they are able to use language quite effectively to discuss high interest topics and such, they may have tremendous difficulty expressing sadness, anger, frustration and other important messages. As a result, behavior may be the most effective means to communicate when words fail.

•Behavior is context related. Understanding how features of a setting impact an individual (either positively or negatively) has particular value for adopting preventive efforts and sets the stage for teaching alternative skills.

Use functional behavioral assessment as a process for determining the root of the problematic behavior and as the first step in designing a behavior support program.

The key outcomes of a comprehensive functional behavioral assessment should include a clear and unambiguous description of the problematic behavior(s); a description of situations most commonly, and least commonly associated with the occurrence of problematic behavior; and identification of the consequences that maintain behavior. By examining all aspects of the behavior, one can begin to design a program that can ultimately lead to long-term behavioral change.

Think prevention.

Too often the focus of a behavior management program is on discipline procedures that focus exclusively on eliminating problematic behavior. Programs that are reactive to problematic behavior do not focus on long-term behavioral change. An effective program should expand beyond consequence strategies (e.g., time out, loss of privileges) and focus on preventing the occurrence of problem behavior by teaching socially acceptable alternatives to problem behavior and creating positive learning environments.

Use antecedent and setting event strategies.

Antecedents are those events that happen immediately before the problematic behavior. Setting events are situations or conditions that can enhance the possibility that a student may engage in a problematic behavior. For example, if a student is ill, tired or hungry, he may be less tolerant of schedule changes. By understanding settings events that can set the stage for problematic behaviors, changes can be made on those days when a student may not be performing at his best to prevent or reduce the likelihood of difficult situations and set the stage for learning more adaptive skills over time. In schools, there are many examples of antecedents that may spark behavioral incidents. For example, many students with Asperger’s Syndrome have difficulty with noisy, crowded environments. Therefore, the newly arrived high school freshman who becomes physically aggressive in the hallway during passing periods may need an accommodation of leaving class a minute or two early to avoid the congestion which provokes this behavior. Over time, the student may learn to negotiate the hallways simply by being more accustomed to the situation, or by being given specific instruction or support.

Key issues to address when discussing these types of strategies are:

•What can be done to eliminate the problem situation (e.g., the offending condition)?

•What can be done to modify the situation if the situation cannot be eliminated entirely?

•Will the strategy need to be permanent, or is it a temporary "fix" which allows the student (with support) to increase skills needed to manage the situation in the future?

Make teaching alternative skills an integral part of your program.

It is critical that students with Asperger’s Syndrome are taught acceptable behaviors that replace problematic behavior and that serve the same purpose as the challenging behavior. For example, a young child with Asperger’s Syndrome may have trouble entering into a kick ball game and instead simply inserts himself into the game, thereby offending the other players and risking exclusion. Instead, the child can be coached on how and when to enter into the game. Never assume that a student knows appropriate social behaviors. While these individuals are quite gifted in many ways, they will need to be taught social and pragmatic communication skills as methodically as academic skills.

One particularly relevant skill to teach is the use of self-management strategies. Self-management is a procedure in which people are taught to discriminate their own target behavior and record the occurrence or absence of that target behavior (Koegel, Koegel & Parks, 1995). Self-management is an especially useful

technique to assist individuals in achieving greater levels of independent functioning across many settings and situations. By learning self-management techniques individuals can become more self-directed and less dependent on continuous supervision and control. Instead of teaching situation specific behaviors, self-management teaches a more general skill that can be applied in an unlimited number of settings. The procedure has particular relevance and immediate utility for students with Asperger's Syndrome. For example, an important self-management skill may involve teaching a student with Asperger’s how to practice relaxation or how to find a place to regroup when upset.

Effective behavioral change may require that all involved change their behavior also.

Since behaviors are influenced by context and by the quality of relationships with others, it is also important for professionals and family members to monitor their own behavior vigilantly when working with students with Asperger’s Syndrome. For example, each time a teacher reprimands a student for misbehavior, an opportunity may be lost to reframe the moment in terms of the student's need to develop alternative skills.

Design long term prevention plans.

In the midst of problematic behaviors, it may be difficult to adopt a long-term approach to a student's educational program. However, it is imperative that plans for supporting a student over the long term be outlined right from the start. Many procedures and supports with the most relevance and utility for students with Asperger’s Syndrome (e.g., specific accommodations, peer supports, social skills, self-management strategies) must be viewed as procedures that are developed progressively as the child moves through school. These are not crisis management strategies but the very things that can decrease crisis situations from arising.

Discuss how students with Asperger’s Syndrome fit into typical school-wide discipline practices and procedures.

A major issue to discuss is how students will fit into and respond to typical disciplinary practices. Many students with Asperger’s Syndrome become highly anxious in the presence of practices such as loss of privileges, time outs or reprimands, and often cannot regroup following their application. Another issue relates to school-wide discipline procedures. Schools which focus on suspension and expulsion as their primary approach, rather than on teaching social skills, conflict resolution and negotiation and on building community learning, will typically be less effective with all students, including those with Asperger's.

Collaborate, collaborate, collaborate!

Educators, administrators, related service personnel and parents will all need to collaborate on a behavior support plan that is clear and easily implemented. Once developed, the plan will need to be monitored across settings, and regularly reviewed for its strengths and weaknesses. Inconsistencies in our expectations and behaviors will only serve to heighten the challenges demonstrated by an individual with Asperger's.

References

Bambara, L.M. & Knoster, T.P. (1995). Guidelines: Effective behavioral support. Harrisburg, PA: Pennsylvania Department of Education, Bureau of Special Education.

Koegel, R.L., Koegel, L.K., & Parks, D.R. (1995). "Teach the individual" model of generalization: Autonomy through self-management. In R.L. Koegel & L.K. Koegel (Eds.), Teaching children with autism: Strategies for initiating positive interactions and improving learning opportunities (pp. 67-77). Baltimore, MD: Paul H. Brookes Publishing Company.

Williams, K. (1995). Understanding the student with Asperger Syndrome: Guidelines for teachers. Focus on Autistic Behavior, 10, 9-16.

 Read more: http://www.autismsupportnetwork.com/news/ten-steps-towards-supporting-appropriate-behavior-879642 - ixzz2UPva3MTU

Highlights: April Site Visits

Highlights from my April Site Visits (not in order):

Excelsior Youth Center, Colorado

They offer a wonderful culinary arts program as well as cosmetology school for the residents.

AIM HOUSE: The Factory, Colorado

AIM House offers clients the opportunity to be creative at "The Factory". From making crafts to recording Pod Casts. This program is truly innovative.

The Factory, Recording Studio

Insight Intensive, Colorado

Insight Intensive offers a great alternative to wilderness in the most serene setting! Mountains, horses, dogs, chickens, and hot springs!!

Living Well Transitions, Colorado

The picture does not do the program justice. The office space is home to a group of thoughtful and very experienced clinicians and social workers. Located in the heart of Boulder, this program offers structure and support while maintaining a clients sense of autonomy.

New Vision Wilderness, Wisconsin

New Vision is unlike any wilderness or treatment program I have visited. Experienced clinicians work with the clients by utilizing "Brain Mapping", a trauma focused, evidenced based approach to therapy.

Northwest Passage, Wisconsin

Northwest offers a great opportunity for residents to take part in a photography program, "In A New Light". Check out their site, the photos are beautiful! http://www.inanewlight.org/. Additionally, they offer outstanding assessments for very complex adolescents.

Rogers Memorial, Wisconsin

Rogers Memorial offers a comprehensive program including an Inpatient Eating Disorder, Anxiety, OCD program as well as Outpatient Services. The team was experienced, professional, and warm. I am looking forward to the opening of the new Young Adult Anxiety home, June 2014.

Selecting a Camp: Questions Parents Can Ask

Selecting a Camp: Questions Parents Can Ask (questions from http://www.socialthinking.com)

Overall

Is the camp geared to instruction/learning or is it a traditional summer camp experience?

What is fun and unique about your camp?

What is the size of the camp/camp programs?

What is the counselor to camper ratio?

Give me 3 reasons kids enjoy being here?

Give me 3 reasons counselors enjoy being here?

Camp Counselors

What are the qualifications of camp counselors?

How are counselors chosen?

How are counselors trained?

Do counselors use Social Thinking concepts, vocabulary, and strategies? If yes, how?

Do they incorporate any other social learning methods, like RDI, SCERTS, The Incredible 5-Point Scale, The Zones of Regulation, etc.?

Camp Life

How are campers grouped?

Is there a choice among activities or do all campers follow one schedule throughout the day? Can campers choose to opt out of activities?

How much of the day is structured, how much is free time?

Are visual tools and schedules used?

Behavior & Discipline

What is the camp’s discipline policy? For campers, for staff?

How are behavior problems handled?

How do staff prevent meltdowns? Handle a meltdown once it starts?

What is the difference between punishment and discipline?

Other/Health/Medical Related

Can special diets be accommodated?

How are sensory issues handled? Is there a quiet place campers can access if needed?

Does the camp have an emergency plan?

What’s your repeat rate (campers who return another year, staff who return year over year)?