Sibshop is a group for children, ages 6-12 years, who have siblings with special needs. These needs vary from CP to autism to diabetes, and many others. Sibshop meets every other month during the school year and is supported by the Boyle Community Pediatric Program at the Hood Center (DHMC), Parent to Parent, and UDS (United Developmental Services). These organizations provide staff members (Toni LaMonica, Philip Eller, Kirstin Walker) who facilitate the Sibshop events.

The next Sibshop is Saturday, June 5 - and we are working on a visit to a farm in Vermont. For more information or to sign up your child, call Philip at 1-800-698-5465.

Our web server provider received our domain renewal fee last November when it was due - but due to a glitch in their system the fee was not passed onto the domain name Resistrar. Therefore, we lost the domain name. There was nothing our server provider could do about the situation - we would just have to keep checking for when that name would come up for us to make application again for it. Our volunteer webmaster, Ted Bergeron, was constantly checking on this and put in an application just as soon as it came up. However, another applicant from Germany got his paper work processed quicker than ours. Apparently this company or individual snatches up expired domain names that were once used for legitimate purposes and uses them to promote porn sites. This is what happened to our uvsg.org - it was sold to a porn site! We are very distressed by all of this, especially for those people who have tried to connect with us using the old address. We apologize for this experience. Please spread the word about this to anyone else you know who might need to know. Thanks for your understanding and your help.

WORD TO THE WISE: if you are ever involved in an organization or business that decides to no longer use their web domain name, DO NOT let the domain registration lapse - at least not for several years or so. It is worth the cost of annual registration for your clients/customers to not be subjected to this kind of predatory action by porn distributors!

Parents who currently receive Medicaid insurance for their children either through HC-CSD (The Katie Beckett Waiver) or through needs based Medicaid need to be conscious of deadlines for filing re-determination papers. GET YOUR PAPERWORK COMPLETED AND IN BEFORE THE DUE DATE. If you lose (or lose track of) the paperwork you may lose the benefit.

• Make copies of all materials
• Keep a log of all phone calls
• Follow up after sending the materials to make sure that they were received

The latest edition of the New Hampshire Challenge contains important information on upcoming hearings on the Katie Beckett Waiver. There is an interview with the new commissioner, John Stephen. Page eleven of the Challenge addresses questions that you may want to consider, especially if you are passionate about retaining the waiver and would like to testify at the upcoming public hearings.

Families seeking specific support through Council grants will be asked to complete the new Individual Family Support Plan. This plan is now required by the State and it provides a vehicle for the Council to have hard data relating to the needs of the region.

At the November Council meeting the members voted to participate in a statewide program of respitality. Respitality is a combination of respite and hospitality. Hotels and inns in New Hampshire donate accommodations to company named Respitality by Design. Agencies contract with this company to provide a maximum of two nights per calendar year to eligible families. UDS eligible families may contact Tara at 443-4109 or tara@uds.org for more information.

The Council has had representation at UDS task force groups addressing respite and quality. The Council will be kept informed on waiting list issues. Council members receive monthly reports from both UDS and SNSC. One member represents the region at the statewide Council. We do very well for a small region--our voice is heard and respected in the state.

The Council has a goal to focus resources on social and recreational activities for those over age twenty-one while it retains a concern for the needs of other age groups. There was an astounding response to a recent survey sent out by UDS. Over one hundred surveys were sent out with a response of about fifty-five. The challenge will now be to create opportunities to address the expressed needs in the current economic environment. If anyone is interested in hearing more about this, sharing his/her thoughts, or becoming involved please contact UDS at 448-2077.

What is expected of a teacher in working with a student having Asperger's Syndrome?

• encourage the child to be sociable, flexible and cooperative when playing or working with other children;
• help the child to recognise social cues and learn the codes of social conduct;
• provide personal tuition on understanding and managing emotions i.e. Affective Education;
• tuition and practice to improve friendship and team work skills;
• help the child to develop special interests as a means of improving motivation, talent and knowledge;
• implement a program to improve gross and fine motor skills;
• encourage the understanding of the perspectives and thoughts of others using strategies designed to improve Theory of Mind skills;
• encourage conversation skills;
• provide remedial tuition for specific learning problems;
• enable the child to cope with their auditory or sensory sensitivity.
• Teachers need to have a cairn disposition, be predictable in their emotional reactions, flexible with their curriculum and style of teaching to accommodate the child with Asperger's Syndrome, and recognise their positive aspects. It is essential to be able to see the world from the perspective of the child.
• A keen sense of humour will also help.
• Do not allow them to perseverate and discuss or ask questions about isolated interests. Limit this by designating a specific time during the day when they can talk about it.
• Use positive reinforcement, they respond to compliment. Should be praised for simple, expected social behavior that is taken for granted in other children.
• Firm expectations must be set for completion of classwork. Follow class rules and at the same time meet them half way by providing opportunities for them to pursue their own interests. **Teacher may need to individualize all assignments to their interest and gradually introduce other topics.
• Don't push for them to participate in competitive sports or games, especially team ones where they need a deep, quick thinking understanding of coordinating one's own actions with those of others on a team.
• When assigning timed units of work, make sure the individual rate is taken into account and adjusted.
• Test taking can be very stressful. They may need more time and adapted tests even alternative settings.
• Do not assume they understand what they can read, especially if they are fluent readers.
• Quality is job one should be a standard as many don't care to do quality work if it is areas in which he or she is not interested.
• Learning must be rewarding NOT anxiety provoking.

Low

1. lower your body so that your eyes are at or below they eye level of the child
2. lower your voice - both volume and pitch, keep tone matter of fact no matter what
3. lower the complexity of language. Use short sentences. Don't question don't preach

1. slow down your own heart rate and breathing rate
2. slow down your rate of speech. Pause between sentences.
3. Slow down your movements.
4. Slow down your agenda. It takes as long as it takes. If you must move or make a change make a plan and calmly explain. Ex. "We can sit quietly until 12:00. Then we will take ten deep breaths together and move to a more private spot."

1. once they begin to settle down make objective and descriptive comments like, "Boy, were you angry. Your face was redder than I've ever seen it."
2. Try to refrain from asking questions (this can retrigger)
3. If you think you know what happened make a guess. "I'm not sure, so tell me if I have this wrong, but it looked like
4. If they start to talk, don't try to fix or respond, just listen.
5. Problem solve and talk about consequences at a later time.

1. Try to process a situation or teach a lesson when they are agitated.
2. Announce negative consequences at this point.
3. Make threats ex. "If you don't settle down right now I'll..."
4. Think you are letting them escape anything.
5. Worry about what other people think.
6. Think that this will go on forever. They learn that there are adults who can bear witness to their agitation and be helpful so they will be more willing to seek help in the future.

Task Cards

include stuff I need
Steps
Don't

(Thinking Maps)

for them to simply fill in.
Topic sentence, detail sentences, concluding sentence

Ex. Multiple Choice Questions
Read directions carefully
Read each question. Read each possible answer carefully.
Am I sure about which answer is correct?

Mark out the choices that are obviously wrong.
Read the answers that are left.
Do any have trick words like never or always.
Mark out those answers.
Read what is left. Choose the answer that looks most familiar.

A major cause of anguish for children with an Autistic Spectrum Disorder, their families and teachers is the satisfactory completion of homework. Why should this group of children have such an emotional reaction to the mere thought of having to start their homework and such difficulty completing assigned tasks? There may be two explanations. The first is based on their degree of stress and mental exhaustion during their day at school and the second is due to their profile of cognitive skills.

The stress of being at school

As with their classroom peers, a child with an Autistic Spectrum Disorder has to learn the traditional educational curriculum but they encounter additional learning experiences and sources of stress than do other children in their class. They have an additional curriculum, namely the social curriculum. They have to use their intellectual reasoning to determine the social rules of the classroom and the playground. Other children do not have to consciously learn social integration skills but these children have to decipher the social cues and codes and cognitively determine what to do and say in social situations. Often their primary feedback is criticism for an error with little recognition from others when they make the correct response. Learning only from your mistakes is not the most efficient way to learn. Thus these children have to concentrate on an extra curriculum that leaves them intellectually and emotionally exhausted at the end of the school day. They also have difficulty reading and responding to the emotional signals of the teacher and other children, coping with the complex socialising, noise and chaos of the playground, the unexpected changes in the school routine and the intense sensory experiences of a noisy classroom. Throughout the school day they rarely have an opportunity to relax.

It is essential that we recognise the degree of stress experienced by such children, as the signs can become evident in their behaviour and mood. The signs include the child who is described as a Dr. Jekyl and Mr. Hyde in that the indicators of stress are not conspicuous at school but the child is a very different character at home. They may be quiet and compliant in the classroom but intolerant and aggressive immediately they return home. Some children become extremely anxious in the morning before going to school and school refusal or walking out of school can be a sign of unbearable stress. Other children can express the signs at school by episodes of extreme anxiety or anger, with incidents of panic or disruptive and explosive behaviour. Others suffer chronic stress, which contributes to a clinical depression. When I talk to children with autism and Asperger’s Syndrome who are having difficulty learning the social curriculum and coping with the stress of school, they often explain that they want a clear division between home and school. Their comment is "School is for learning, home is for fun or relaxation" Thus the prospect of interrupting their much needed and deserved fun and relaxation with homework is more than they can cope with.

Profile of Cognitive Skills

Children with an Autistic Spectrum Disorder have an unusual profile of Cognitive skills that must be recognised and accommodated when they are undertaking academic work at school and home. One aspect of the profile is impaired Executive Function. The profile is similar to that of children with Attention Deficit Disorder in that they can have difficulty planning, organising and prioritising, a tendency to be impulsive and inflexible when problem solving and poor working memory. Other features include a difficulty generating new ideas, a need for supervision and guidance and determining what is relevant and redundant as well as poor time perception and time management. There is also the likelihood of an unusual profile on standardised tests of intelligence especially with regard to verbal and visual (or Performance Scale) intelligence. Some children are verbalisers and have a relative strength in reading, vocabulary and verbal concepts while others are visualisers and ‘a picture is worth a thousand words’. The child’s cognitive and learning profile is usually recognised by school authorities and special provision made for the child in terms of an assistant in the classroom to facilitate their academic progress. The teacher knows how to adapt the curriculum for a child with an Autistic Spectrum Disorder but this knowledge and service are not usually available at home.

The following range of strategies are designed to minimise the impaired Executive Function, accommodate their profile of cognitive skills and help the child complete their homework assignments with less stress for the child and family.

Create a learning environment.

The area where the child works must be conducive to concentration and learning. A useful model is the child’s classroom with appropriate seating, lighting and removal of any distractions. The distractions can be visual such as the presence of toys or television, which are a constant reminder of what the child would rather be doing or auditory distraction such as the noise from electrical appliances and the chatter of siblings. Ensure the working surface only has equipment relevant to the task. Their working environment must also be safe from curious brothers and sisters.

A daily homework timetable can be made by a parent with guidance from the teacher to define the expected duration and content of each homework activity or assignment. This can be extremely helpful if there are problems with the child’s allocation of time to each homework component. Sometimes the homework can take hours when the teacher intended only several minutes on a specified task.

A timer can be used to remind the child how much time is remaining to complete each section of homework. It is also important to ensure that time scheduled for homework does not coincide with the child’s favourite television program. If it does, they may have priority use of the video recorder and can watch the program after their homework.

If regular breaks are necessary to promote concentration, the work can be divided into segments to indicate how much work the child has to complete before they can take a momentary break. The usual mistake is to expect too much prolonged concentration.

Teacher’s preparation of the homework.

The teacher can highlight key aspects of the homework sheet, written material and questions so that the child knows which aspects are relevant to their preparation of the assignment. They can ask the child to formulate their plan before commencing the assignment to ensure their work is coherent and logical, especially if the homework is an essay. If the assignment takes several days to complete, it is important that the teacher regularly reviews the child’s rough drafts and progress, which also increases the likelihood that it will be completed on time.

Memory problems

If the child has difficulty remembering exactly what was set for homework and remembering relevant information during homework, a characteristic of impaired executive function, a solution is to buy an executive toy. A small cassette recorder used for dictation can provide a record of the teacher’s spoken instructions and the child can add his or her own comments or personal memo to the recording to remind them of key information. The child and their parent will then know exactly what was said and what is relevant to the task. Another strategy is to have the telephone number of another child in the class to ask them for the relevant information.

A homework diary and planner can help the child remember which books to take home and the specific homework for each evening. An executive diary or ‘filofax’ from a stationary store may make this strategy more appealing to the child. The techniques are explained as being appropriate for adult executives rather than for children with learning problems.

Supervision

The child may have difficulty getting started or knowing what to do first. Procrastination can be an issue and a parent may have to supervise the start of the homework. Once the child has started, this is not the end of the supervision. A parent will also need to be available if the child requires assistance when they are confused and to ensure that they have chosen the appropriate strategy. There can be a tendency for such children to have a closed mind to alternative strategies and a determination to pursue an approach when other children would have recognised the signs that it would be wise to consider another approach. A technique to show that there is more than one line of thought is to provide the child with a list of alternative strategies to solve the particular problem. The child may need to know there is a plan ‘B’.

Parents and teachers soon become aware of the degree of supervision required which can be a major problem for a parent with other family commitments when the child is doing their homework. Supervision is also necessary to help the child prioritise, plan, assist with word retrieval problems and maintain motivation. Motivation can be enhanced by specific rewards for concentration and effort

Emotion Management

Children with an Autistic Spectrum Disorder are notorious for their difficulty coping with frustration and criticism, and their inability to manage their emotions. They can become quite agitated when confused or having made a mistake. An adult will need to be available to help the child remain calm and logical. The adult will also need to model calmness, which can be difficult when both child and adult are confused as to what to do. It can end in tears for both parties.

Cognitive Style

Special consideration should be given to the child’s cognitive strengths and weaknesses. If the child’s relative strength is in visual reasoning, then flow diagrams, mind maps and demonstrations will enhance their understanding. If their strength is in verbal skills then written instructions and discussion using metaphors (especially metaphors associated with their special interest) will help. Additional strategies include the use of a computer and keyboard, especially for those children who have problems with handwriting. Sometimes a parent acts as an ‘executive’ secretary and types the material for the child and proof reads their answers. Homework may be a collaborative rather than solitary activity. The parent is not being over protective or neurotic, they just know that without their involvement, the work would not be done.

Children with an Autistic Spectrum Disorder often enjoy having access to a computer and may be more able to understand material if it is presented on a computer screen. Material presented by a person adds a social and linguistic dimension to the situation, which can increase the child’s confusion. Teachers should consider adapting the homework so that a considerable proportion of the work is conducted using a computer. Word processing facilities, especially graphics and grammar and spell check programs are invaluable in improving the legibility and quality of the finished product.

If the parent is unable to help the child solve a particular problem, a solution is to come to an arrangement with the teacher where by the teacher is contacted by telephone without hesitation as to the time of day or night and they can talk directly to the child. Regular use of this approach can lead to a significant reduction in the type and amount of homework.

Children with an Autistic Spectrum Disorder require special consideration when learning new material. Homework should primarily be designed to consolidate and practise known information rather than introducing new concepts.

Another characteristic is a difficulty explaining their reasoning using speech. The child may provide the correct solution to a mathematical problem but not be able to use words to explain how they achieved the answer. Their cognitive strategies may be unconventional and intuitive rather than deductive. One may need to accept their correct solution even if the logic is unclear to the neurotypical mind. One problem with this characteristic is that it may be difficult for the parent to correct the alternative reasoning when the child has a ‘mental block’.

Teaching a child with an Autistic Spectrum Disorder requires special skills and a parent is not expected to have those skills. As a parent, one is also more emotionally involved than a class teacher and it can be difficult for them to be objective and emotionally detached. One option is to hire a homework tutor to provide the skilled guidance and supervision. However, this may be beyond the financial resources of most families.

A controversial suggestion.

If homework is associated with such anguish, what can be done to reduce the despair of the child who is exhausted from their day at school, the parent who tries to motivate their child and the teacher who recognises that homework is not the most effective means of education for such children? If the regular amount of homework is demanded of the child then everyone must recognise the considerable degree of time and commitment that is necessary from all parties to ensure it is completed satisfactorily and on time. One option is to enable the child to complete their ‘homework’ at school. It can be undertaken at lunchtime and before or after classes in their home class or the school library. However, they would still require supervision and guidance from a teacher or assistant. In High School, some children have been able to graduate taking fewer subjects and the extra time available in the school day dedicated to homework.

If all these strategies are unsuccessful, what is the alternative? ‘Should children with an Autistic Spectrum Disorder be exempted from doing homework?’ If the strategies outlined in this article are unsuccessful or unable to be implemented, then my reply is ‘yes’. Sometimes this advice is to the great relief of the child, their parent and probably their teacher. You can quote me on this.

This paper was originally published in the Summer 2000 edition of The Morning News (volume 12, number 2) The Morning News is available from Jenison Public Schools, 2140 Bauer Road, Jenison. MI 49428. Phone 616 457 8955. The Summer edition features several papers on homework.

Other Board members are:

Congratulations to all the new officers and best wishes to the whole Board in its work in the next year.

Other children with special needs may be less obviously, but equally affected by a power outage, and they are no less in need of an advance plan. Children with autism, brain injury, AD/HD, developmental disability, visual impairments, etc. may find it very difficult to adjust to this sudden change, and it may result in lots of anxiety and fear and then in a behavioral reaction. So an advance plan is equally important for them and their whole family. For these children a regular discussion, say twice a month during the winter at the supper table, is very valuable. Talk about the specifics of what may happen, who will do what to respond, what the child may feel in the situation, what resources will be drawn upon (like where flashlights are kept, etc. - one right by the child's bed would be extremely helpful). You might also want to a practice drill to help desensitize the child to the possible situation. Also post a written copy of the plan on the refrigerator and in the child's bedroom so they can look it over occasionally on their own. If appropriate use pictures on this plan to convey relevant information. The child may even want to draw the pictures them self or cut them out of a magazine. This project could even involve all members of the family.

When a power outage occurs in the home of a child with special needs (and in fact for all children) an emergency plan drawn up in advance and discussed regularly and even practiced occasionally will prove true and valuable all the old adages about "an ounce of prevention is worth a pound of cure."

Modified and supplemented by Philip Eller, P2PNH Coordinator

In other business, retiring Board member, Dr. Doug Williamson was recognized for his service as President for the past year. Tony Grazzaffi is also leaving the Board. Two new Board members were voted in by those present: Ellie Pierce of Etna and Hope Charkins of Norwich.

• Young People's Peer Groups, Social Supports Resources
• Jarvis Clutch, Social Spy and All Kinds of Minds
  Dr. Mel Levine
  Educators Publishing Svs.
• Playground Politics
  Stanley Greenspan, MD
  Perseus Books
• How Rude! The Teenager's Guide to Good Manners, Proper Behaviour, and Not Grossing People Out
  Lex J. Packer, Ph.D.
  Free Spirit Publishing
• Inclusive Programming fro Middle School Students with Autism/ Aspergers Syndrome
  Sheila Wagner, M. Ed.
  Future Horizons
• Asperger's...What Does It Mean To Me?
  Catherine Faherty
  Future Horizons
  (This is a helpful workbook for the Social Identity Books I described.)
• Conversations, A Framework for Language Intervention
  Barbaro Hoskins, Ph.D.
  Thinking Publications
  (This book offers actual social scripting you can use in peer groups.)
• Don't forget to peruse your favorite cookbooks, the ones with plenty of photos are great, though there are some good ones specially designed for non-verbal kids that are totally visual. You can consider your students' sensory needs in deciding what snack to enjoy. Popping popcorn is very good for those who seek visual "stim". Some kids need to chew something taffy-like at the end of a frustrating school day. Others love to watch a blender mix up fruit smoothies. Frozen, slushy treats are stimulating for those with low arousal levels.

Sibshop is co-sponsored by SNSC, P2PNH, UDS, and the Boyle Community Pediatric Program of DHMC. Philip Eller, Coordinator of P2PNH, as well as Toni LaMonica, SNSC Board member are two of the facilitators of this group which meets about five times a year.

For more information about Sibshop call Philip at 448-6393 or 1-800-698-5465.

Check out this great article at: www.vnews.com/10262003/1377122.htm.

The cost is $10 per cookbook, we have fewer than 300 to sell, and this is a fundraiser for SNSC. Please give us a call at 448-6311 or 448-6393 to reserve your copy (copies).

As usual, Chef Bob (Sullivan) grilled his tasty hamburgers and hot dogs. Maryellen and Philip supplied baked beans and desserts. Families brought a tremendous array of very tasty salads. By the end of the evening everyone was quite full - of good food and and good fellowship.

SNSC's Parent to Parent of Region XII, organizes and runs this event every year for the Region XII Family Support Council which supplies the funding for everything.

Other events included free Ben & Jerry's ice cream, sale of chocolate chip and fruit desserts from the Bake Off, face painting by Sarah Tantillo, free balloons, and especially the Fun Bounce House which all the kids loved. A good time was had by all - in spite of the brief showers at the beginning of the afternoon. Proceeds will help carry on the work of the Special Needs Support Center.

Of the six programs the organization offers, the newest is the Respite Child Care Program, which has been running for about a 18 months. This program offers services to all families, with or without a special-needs child. Because of funding constraints, the program focuses on offering respite to New Hampshire families, but will try to help Vermont families in desperate or very needy situations, Sullivan said.

Nicole Demers is the coordinator of the Respite Child Care Program. Demers, a native of Lebanon, recently returned to the Upper Valley from Colorado, where she worked at a residential facility for children.

"I've always had a strong interest in the welfare of children and families", said Demers, who began baby-sitting when she was 12. While still in high school, Demers was employed by Dartmouth-Hitchcock Child Care Center. At Plymouth State College, she studied early childhood education and math. She also has experience as a private nanny.

"If I can assist families in any way ... it's very rewarding," stated Demers at the time of the interview with the Valley News in the Lebanon office of the Special Needs Support Center.

An edited transcript of that interview with Demers and Sullivan follows.

Valley News: What is respite care? Maryellen Sullivan: Respite is a break; it's time out. ... The people who designed this program and helped to make it a reality hoped ... that respite be seen as a very normal part of our lives, that we all need a break. ... That is a goal that is being realized. One way we're measuring that is, that more and more parents are hearing about this (the respite program) by word of mouth, and are calling themselves, rather than an agency or an organization calling on behalf of a parent. ... For me, that means that a parent has heard about the program and feels comfortable making the call to say, 'I need a break.' Nicole Demers: Our respite care is designed to give all families a break. We don't have any financial qualifiers, we don't require that there be any special needs or diagnoses. What it does is enable parents who don't have outside resources to get a break, (for example) to go to appointments themselves. ... We have families, for example. (in which) the mom might (need to go to an appointment for) counseling, the dad may be at work, and they have no one to watch their children, so I would find them a provider. ... Or, I have cases where the child may have some severe behavior issues and they can't find anyone to watch their child but they really need a break, and mom and dad would enjoy an evening out. So we would go ahead and find a provider and if they need help with some funding, we try to assist them. Valley News: How many providers do you have on your list? Nicole:I have a list of about 50 providers right now. Valley News: Who are the providers? Nicole: Providers come from all over the Upper Valley. They generally are people who have had some experience with children. ... It's someone who wants to give a gift of time to a family, someone who likes to work with children ... as long as their backgrounds check out and their references check out and we feel they would be safe in the home. Valley News: Do you do a criminal background check? Nicole: Yes, we do. Valley News: Why can't families simply get a baby-sitter? Nicole: Quite honestly, if you have a child who does have either a special medical need or has severe behavior issues, a baby sitter isn't going to be qualified. A teenager just would not be able to handle some of the cases that come across our desk. I try to find providers who have some experience that would match up with the case, and with what the family needs. Sometimes it's a matter of timing, too. A lot of families need daytime help. and baby sitters aren't often available during the daytime. Maryellen: The other part is that there may be some families who do not have a child with any special needs but neither do they have any supports here in the Upper Valley. Maybe they've just moved here and they don't have any relatives, they don't know of any baby-sitters, and we can help them out. if they call. Valley News: So, to be clear about this: Is the program for any child, for any family? Nicole: Any family. Valley News: And the providers are trained to handle any situation in which there is a special-needs child as well as a child without special needs? Nicole: Yes. Valley News: Are the providers paid? Nicole: We do not employ providers. The parent contacts us, and we then give the parent the money to pay for respite. Valley News: Thats if the parent doesn't have the money. If the parent has the money. the parent pays. Nicole: Yes. And in many cases. I think, the parent is giving a certain amount and we are paying the parent an amount in addition to that in order to cover the cost, if the parent can't pay the whole amount. Valley News: What is the cost? Nicole: It is so varied. There are some people who have relatives who have agreed to do respite for them, and it might be $5 an hour, all the way up to parents who have kids with pretty challenging behavior and they're paying $17 an hour. ... We probably wouldn't be paying the whole $17, but we're paying a portion of that. Maryellen: To enable the family to get somebody to come in. Valley News: What do parents need to do to receive services? Nicole: Call me. Valley News: How do you determine if they can afford it? Nicole: I ask them ... if they can make a parental contribution. ... I ask them what amount they can afford, and we go from there. ... I might meet them halfway. ... Or, I have had cases where they just needed the coordination (of finding a provider) and the family will pay... Valley News: Does the provider go to the child's house? Nicole: Generally speaking. There are certain cases where the provider provides overnight care at their own house or they'll be out doing community activities. It depends on the family situation and what the family needs. Occasionally it means that the child is out of the house as opposed to the parent. Maryellen: We are trying to be as family-centered as possible and we are trying to do what they need, not what we think they need. If a parent says, "I need a couple of hours alone in my house," then we'll try to find somebody who will be out in the community with the child. Valley News: Can you talk about parents' need for some time for renewal? Nicole: .. . Regardless of whether children have special needs or not, parenting can be a tough job. ... They all deserve a break. (With) any job you get a vacation, and parents don't get that. So. why not give them just a couple of hours to go out and have some alone time? ... And get that necessary break, to refresh themselves and come back with a positive attitude and frame of mind ... and benefit the whole home structure. Valley News: Valley News: How does it benefit a couple to go out together? Nicole: It gives them a chance to talk without being interrupted by the children, hopefully they'll be able to talk about something other than the children ... it's refreshing... Maryellen: You can go away for a couple of hours, and come back, and be glad to see the children. ... It's a whole new relationship that's able to take place. Valley News: Because parents get tired. Maryellen: Sure. Nicole: Parenting is 24 hours a day. It's not that parents don't love their children. Maryellen: Or aren't being good parents, by saying they need a break. Nicole: Because by saying, "I need a break," you're recognizing your own needs. If anything, that makes you a better parent for it. Valley News: If people are looking for full- time or part-time day care, can they call you? Nicole: Not really. The program is set up to provide temporary respite. Maryellen: We have helped children to go to camps in the summer, we have helped pay part of costs in certain instances. ... Things are not set in stone. ... We try to do what the family needs. ... Even in a definition of respite ... people see "a break" in many different ways. We try to accommodate what it is that the family needs in order to feel that they have had a break. Valley News: How many families have called upon you for services for respite? Maryellen: For the first year, it was 158 (families), in a variety of ways. Valley News: How much lead-time do you need? Can a parent call in the afternoon, and say, "I've got to get out of here?" Nicole: I would try. If it's a family that already has a provider in place, I can call the provider and say, "Do you have the time?" and hopefully, they do. But, in other circumstances, ... it's not guaranteed. ... We're not an emergency service... Valley News: Do you find that some of the children are at risk from some kind of parental abuse if respite isn't offered? Nicole: From research I've been doing on the Internet about other respite programs, parents often say that it helps them to stay healthy. I think that it is a prevention tactic. Maryellen: That is, in fact, why we have the Endowment for Health grant. Because it is a program that leads to a healthy family Valley News: What do you mean by a healthy family? Maryellen: Working together, living in a relatively stress-free setting, interacting with each other in a ... normal relationship. Valley News: Are you interested in having teenagers call you to be added to your provider list? Maryellen: (If parents are looking for a teenage baby sitter in their neighborhood) we'd probably recommend that they call Youth-In-Action in their town, who would already know the teenagers. ... I think that's a more workable option than our collecting names and information from a lot of teens Nicole: There is an actual baby sitters list through the Child Care Project where teenagers can register Maryellen: We haven't focused on collecting a lot of teenagers as providers and I don't see us doing that. I think there are other organizations that can help with that... Valley News: Can you give a brief statement of goals of the respite program? Maryellen: The first goal, as I said before, is to have people view respite as a normal and healthy part of life, that we all need a break. A second is to increase the provider pool in the Upper Valley. We've had remarkable results in doing that. Nicole has 50 people on her list. If someone calls who wants to be a provider, but needs a lot more hours or full-time employment, we refer that person to one of the other organizations in the Upper Valley who provide respite care. That would be to United Developmental Services for working with children with developmental disabilities or perhaps to the VNA (Visiting Nurse Alliance) or somewhere else. Valley News: Who else provides respite? Maryellen: West Central Services provides some respite for their clients. ... We have collaborated with both agencies. (Due to budget cuts) there have been some cuts in UDS respite. ... We have tried to fill in the gap that is left. Valley News: What is a third goal of your program? Maryellen: To provide trainings that will make some people within that provider pool more comfortable with working with children who have more special needs or more challenging behavior....(This year) we're really going to focus on the trainings... Valley News: What are some of the topics you're covering in the trainings? Maryellen: Family-centered support, disabilities, medical issues, and CPR training will be a requirement. We won't do that training, but we will offer a list of places that provide it and reimburse providers who take that training. We are collaborating on partsof this. For instance. (earlier this year)there were some behavior presentations prepared by the Child Care Project, and speakers that were arranged by the Child Care Project in Hanover. People who came to our first meeting also went to hear those speakers. Whenever we can, we will collaborate with other organizations that might already be doing a part of it. Our fourth goal is sustaining the program. Starting in October, will be the third and final year of the Endowment for Health grant. At this point, funding...is an issue. We are determined to keep this program going... We feel it is helping a lot of parents and we have thought of some ways to enhance the program, to offer different, other aspects of it.. .starting this late summer. . .Adding things such as SOS respitality component... that's something that's being done in other parts of the state, at agencies for developmental disabilities... What it does is offer parents a night out at a local hotel at no cost, with a respite for child care, paid, and perhaps even a voucher for dinner somewhere... It's being done in several parts of the state, so there is some exchange. (For example) If parents from the Seacoast want to go to the mountains. ... We are thinking that would be a very nice thing to offer parents in this area. ... We've talked about cooperative playgroups, cooperative respite care... There are some things we would like to do to complete the program, but we are looking for funding to continue. Valley News: Do you accept donations? Maryellen: Definitely. Nicole: I would like to reiterate ... that not only would I like to sustain the program. But I'd like to see it grow. I think it is a wonderful program that really benefits families.