Uncharted Waters

 

The world  crashes down around you. The waves of your emotions are jostling you from side to side. You search for something to grab onto to steady yourself as the numbing news reaches your brain that your child may never walk, or talk or play ball or jump rope or graduate high school or eat independently or even have regular friends come over and spend the night or drive a car or get married or create grandchildren.  The mind reels at a dizzying pace as the information settles in your mind, body and soul.


Many people will thankfully never have this experience, but for the thousands of people a year who will deal with this information, it is very important for the helping professional to try and grasp the impact.  The dreams that are lost are many the parents were not even aware of having until they heard the news.   All kinds of hopes and dreams are attached to births, childhood and new beginnings.  Assumptions are often made that life will sail along a preset course carefully mapped out using guideposts of established education, career and job security. The disability can strike like an unseen boulder rising from below the surface.  The once secure map has to be altered or discarded as doctor and therapy appointments require time from work. Physical and emotional exhaustion require a spiritual inventory of currently held values and beliefs and a new search for meaning. We often hear about the wonderful achievements and accomplishments being made in ever greater numbers by people with disabilities. In each of these achievements there is often a grueling 24 hour a day/ 7 days a week schedule for their caretakers. The person with the disability will struggle with their own challenges, thoughts, hopes and dreams. The siblings will often feel neglected or ignored in the face of the real demands of the situation.  The parent or caretaker will struggle with all of this plus their own confused feelings and resultant life impact.

Working with families of children with disabilities is both challenging and deeply rewarding. Rarely will you witness the strength of human spirit more indomitable than in these families as they cope with the impossible schedule and needs of their children, the grief at not having a typical life and the hope that their child will overcome the odds before them and not only survive but flourish in their world. This client situation presents for the therapist a uniquely sensitive arena of concerns where the impact of our actions and interactions may be magnified due to the extreme ongoing stress of the situation.  The situation of disability, especially when first recognized, is a situation of loss.  The family  and the child depending on age are likely to go through the stages of a grief process: shock, denial, anger, bargaining, and acceptance. (Kubler-Ross).  It is important for the therapist to recognize and understand this process.  This understanding will go further toward healing than any other single intervention.  In a workshop I attended Ken Moses appropriately titled this process From Grief to Growth. Families will move at differing rates from the devastation of the news to often becoming very empowered. This cycle can repeat many times throughout the life of the child. As therapists in this field we may see many children struggling and it is human nature to desire the parents to take a realistic assessment, responsibility and get on with the therapy of the child. It is crucial to realize that grief cannot be hurried or forced,  that it is a natural and very individual process. In terms of our four pointed model there is little to gain through analysis with these families.  We may indeed witness: the history of loss for the family (East), how the loss is affecting their current situation (South), the transference dynamics may fluctuate from therapist as savior to therapist as knower of nothing (West), and the successful coping of the family in their acceptance of the disability as another of life's spiritual lessons (North). 
 

The psychological counseling will parallel grief counseling and social work as the parents may go through an excruciating time of shock  and denial. Here the parents will often downplay the seriousness of the disability in spite of evidence to the contrary. They may see signs of progress no on else can see.  It is important not to take away hope in this stage.  There are always "miracles" and the parent is the person most likely to hold this vision. Most parents will spend their first days trying against any odds to find a cure.  Depending on their financial status and beliefs this can take them all around the world investigating different forms of healing. Although we cannot discourage this behavior, since we never know what might be out there, the encouragement should be placed on following through with any readily available therapeutic rehabilitation sessions, i.e., occupational therapy, physical therapy, infant massage, speech, counseling for the parents (and child depending on age).  It is generally believed that early intervention has the most rapid chance of success.

If the disability is going to be permanent, it will become clear in time and the parent can adjust as this becomes more evident.  Support the parent in their search for information and understanding about the disability. Help them link to family support groups.  There is truly no better support in this situation than another parent who is also going through it.  There is an empathy among these families that transcends words and good intentions.

The stage of anger will often find the parents blaming themselves, the medical establishment, or a host of others for the child's disability.  While there may be truth in responsibility for the disability, it rarely is of any therapeutic gain to the child to pursue this anger.  If there is truly a lawsuit to be filed that should not become the all consuming pursuit of life.  Let a lawyer handle it while the family and child adjust and learn to cope with a new way of living.  The anger can also lead to questioning God, indulging in self destructive behaviors such as drinking and drugs. There is an increased possibility of abusive behavior towards  the child due to frustration and exhaustion. Treat these issues as you would in any other clinical situation: making referrals and getting the parent into more support groups as appropriate.  The disability cannot be an excuse for violence to self or others.

It is important to know that this grief process with disability may not come to a successful resolution and be finished in one course of counseling.  As a child enters new developmental levels or chronological age new hopes and dreams of what that time would be like for this child are bound to surface .  As is often the case, the parents' own issues about a life phase are reactivated when a child arrives at a particular life phase. The young child is often challenging but easier to care for physically.  There are different issues involved when the parent is still helping with things like toileting in adolescence.  The loss the parents thought they had resolved may reappear with even greater force.  Help your clients explore these issues.  If the resulting depression is serious do not hesitate to refer them for a medical evaluation.  Chronic stress can deplete the body of resources necessary to be able to bounce back and cope at a reasonable level.

Bargaining  will be characterized by searching for cures, thinking one more session, drug,  or piece of equipment will end the suffering. Parents may wish they could be able to carry the disability rather than their child. Parents often don't realize how much of it they actually are carrying as they transport from doctor to  therapist and try to navigate the challenges of daily self care. When they take a minute and just stop and look at their child they realize that they are actually suffering more than the child. In The Phantom Tollbooth the main character Milo gets a chance to float above the ground and view things as an adult. After crashing to the ground he agrees that it was interesting "but I think I'lcontinue to see things as a child.  It's not so far to fall."As in many matters kids are more resilient . They do not have the same hopes and dreams and fears attached to their situation .  As long as Mom and Dad and the helpers are on their side they keep pushing along.  I have witnessed children in what many would perceive as the most dire straits laughing and expressing joy from the depths of their souls.  No matter what the circumstance these are still children with the desire to play and enjoy life.  If we meet them with joy and compassion, not heavy hearts and sympathy, they respond with joy in kind. The movement on people first language addresses this issue.  We are reminded to speak of a person with special needs rather than the special needs person therefore addressing the humanity first rather than the difference between us. Helping the parent get enough distance to pull back and see this as a process of learning for the child and family is extremely beneficial.  Please note that I have also seen children in extreme distress many hours a day and any method to relieve this pain is by far the most compassionate choice.  Growing through disability is a challenging process and there will be struggles and pain and there are extremes .  There are also cases where the parents are just too tired to go through one more struggle with their child that day.  Our best intervention is to stay nonjudgmental and affirm that their interest is in the best interest of the family.

Parents in the bargaining stage will try to elicit information that will give them greater hope.  Due to many concerns, both legal and real, therapists cannot build up parents' hopes beyond what is average to any particular case. Additionally, helping professionals must also underline just how bad things can get.  This is an uncomfortable situation for both the professional and the parent.  Each would love to be giving and receiving positive rather than pessimistic forecasts. How it is delivered will have consequences. I know of a case wherein although there was a appointment with the doctor scheduled for the next day, a parent was called and told over the phone by a worried doctor that their child's case might be progressive and they might die. There was no imminent reason for this disclosure, only the fact that the doctor had previously discounted the parent's observation of the child's worsening condition.

Remember life is often intensified more than we can imagine for these families and things we may see as fairly inconsequential take on great importance. Anger may come out here at lack of follow through from doctors or therapist. Canceled or rescheduled appointments for these families are often an enormous inconvenience as they have to plan, dressing, feeding and many other therapy appointments into the course of a day, week or month. One client I worked with was waiting for her visit with a developmental specialist who was ten minutes late.  She was called and told that he had decided to "pour the cement for his driveway that morning" and would not be coming.  Although some of these vignettes may sound like horror stories, one only has to sit a room of parents of children with disabilities to see how commonplace these indiscretions truly are. Try to give these cases the utmost priority whenever possible. There is an expectation from parents that each little bit of therapy is going to push them closer to the goal. As parents come out of the illusion of doctors and therapists are at the helm of their child's progress, they gain greater acceptance of the enormous amount of work and responsibility that they and their child have for each exercise and step of progress made.


 Kim was born with encephalcele, where much of his brain developed outside of his skull.  His parents were told by hospital staff that it would be better not to feed him since he would spend his short life severely disabled and institutionalized.  His parents were strong practitioners in alternative healing methods. Kim was breast fed and stabilized in the hospital.  The parents used diet, therapeutic massage and hands on healing in addition to listening what other therapists had to offer. All of the time they affirmed the consciousness, intelligence and awareness of this special child.  Against the wishes of the speech therapist he has continued without special assistive equipment and his speech is becoming more intelligible.  Any person who takes the time knows he understands and has a terrific sense of humor.  In therapy at age ten he did a sandtray focused around the  operation on his head.  He immediately insisted on bringing his Mom in and showing her. (Figure 12).

 

 

 

 

 

 

 



Both the mother and therapist were overwhelmed by the power of what this young boy was finally able to release and communicate to us without words. Further therapy focused on his emotions with regard to his peers and father.  Sandplay and art were the most accessible therapeutic mediums for this child.  Although his learning is not age equivalent, he is progressing in his art and learning at school with ever improving reading and spelling skills and terrific handwriting. His mother is using his meticulous abilities to organize to help her in her business on secretarial tasks.  She has also engaged the services of local artists to work with him. His life expectancy was less than a year at birth and he has now celebrated his 13th birthday.

In the acceptance phase therapists may perceive the parents as not caring as much. There can be a distancing to reassess the priority of needs and likelihood of gains in any one particular area. We must realize with a child of special needs there are often three or more therapists plus a pediatrician plus specialist doctors  plus educators giving a family information and opinions.  Many families have never been this involved in the medical or educational realms and are going to need significant time and interpretation to understand the total concept of what is being said.  Families as illustrated in Lorenzo's Oil may devote their entire being to helping their child in every manner possible.  Navigating the waters of daily living can be an equally heroic gesture. When an OT is talking to you about whether your child can use scissors, the PT wants you to do a 'simple set of exercises', your doctor is wondering whether the child will live, and the medical bills are sending you to bankruptcy court, the whole picture becomes quite overwhelming.  Parents will necessarily need to pull back occasionally and decide from their experience what is most helpful to their child.  Another important development in this acceptance process is what Tom Sullivan in his book Special Parent ,Special Child refers to as the parent's loss of identity.  They become 'the parent of a child with a disability' to the exclusion of all other sense of self.  He suggests that parents "must be able to have an appropriate sense of humor and an understanding that the battles they fight are not won every day.  These skirmishes are simply endless, and need to be thought of as an ongoing part of life." (Sullivan, p13.) 
 

Emma was disabled by a vaccine at 18 months of age. She had been walking since 9 months and had begun to talk in simple sentences.  Following the HIb vaccine she progressively lost all gross and fine motor development.  She was no longer able to sit up, let alone crawl or walk.  Given the enthusiasm surrounding this vaccine as it is preventative of meningitis, no one initially connected the disability and the shot. After much searching and many tests, it was an osteopath who made the connection of what had happened to this little girl.  At that time the pediatrician and the neurologist reported it as a vaccine injury.  Before this time the child was undergoing numerous tests and appointments and increasingly getting worse.  The tests as in the case in many vaccine injuries showed nothing. Since the parents both had professional careers and private insurance no referral was made to free therapy programs, which were not based upon income; this in spite of having to travel 1 1/2 hours round trip to go to an appointment, which could have been free,  four blocks from their house.  Following a medical bankruptcy these services were mentioned.  The struggles were biggest where the need was the greatest in speech and occupational therapy.  Whereas, the speech therapist had a relationship with the child that encompassed the struggle, the OT was not able to reach this type of understanding with the child.  The parents could see this and cut back on OT and attempted to do these things, eating, printing ,etc. more at home.  The focus became gross motor and speech. Emma was up and walking by 3 years 9 months and has gained both speech and fine motor abilities. By the time the child entered second grade early rising and dressing had become a struggle.  It was determined that having a happier student was more important than punctuality and a modified school day was instituted.  The parents in this case both developed different career options to accommodate the increasing needs of their daughter and became active advocates in the educational rights of children with special needs. In spite of all this success the mother can still report "down" times when she realizes the extent of the injury on learning abilities.  She still wrestles with the concept that one day it will all just be history rather than an ongoing life circumstance.

How We As Mental Health Professionals Can Help

As in any case we must first listen and assess what is this family telling you that they need. Are there survival concerns?  If  food, clothing, or shelter is needed and there is no available social worker or case manager for this client,  you may need to assume this role and try to connect them to appropriate services.  Case management help is often available through Children's Hospitals who will also have social workers who are well versed in these areas. Get a signed release to talk with one and save your client a phone call. This is not a step towards disempowering the client. They will continue to gain in power and authority as it all progresses.Go to link for The National Information Center for Children and Youth With Disabilities 
 

Learn about the diagnosis and treatment to the best of your ability

Use your consultants and  reading to get an understanding of the relevant condition. It will be important for parents to know not only the medical options open to them but the recreational and educational opportunities as well.  If you have a relationship with the child your attendance at an IEP (Individualized Educational Plan) can really help facilitate the parents' goals.  There is usually a social/emotional component to the plan and your feedback can be invaluable. The Individualized Education Plan is available to all children with any special needs.  This can be a most intimidating experience for your average parent who is not used to sitting in meetings with several professionals discussing their child and family.  Supporting and empowering the parent through this meeting can be a lifelong contribution to this family.  There are also advocates available for this process through local disability and parent support groups. Go to the link for Easter Seals. or explore  the link for the ARC.

Kim's recent IEP included a therapist who had been working with him over the last year in junior high.  After attending several IEPs over the years, his mother continues to expect greater awareness on the part of therapists.  Thus, she was shocked, but responded politely, when the physical therapist expressed her concern that Kim had not developed socially beyond parallel play. Remembering the previous vignette that Kim is very disabled in his speech, thought and physical appearance, Kim's mother was stunned when the PT then suggested that he join junior high PE.  In this case junior high PE includes track and basketball and the teacher is not interested in having students with special needs. The mother politely pointed these things out and declined the intervention.


Know the local resources in your area

Know that your hour or session is to be available to support the parent through their process not to solve it for them. There are often no solutions. This is a difficult thing for most humans to accept as it is hard to understand any reason for the suffering of children. We must all acknowledge at times that there are no easy  answers, no theories that explain away the depth of human suffering, no identifiable cause and reasons . Go to the link for Internet Resources For Special Children 
 

Encourage their involvement with the local parents support network

These are the folks who will really understand what your client is going through. Although many parents may be reluctant  initially to reach out for this support, they inevitably find a place where they feel at home.  Struggling on a daily basis with your child's survival and development gives a world view common to no other.  It is a very powerful experience to hear someone express the same frustrations, concerns, hopes and fears that make you uncomfortable.  I highly recommend Special Child Special Parent by Tom Sullivan  for parents, as well as therapists, to more fully understand the repercussions of living with a  child with a disability.Go to link for Family Village 
 

Erica was eight when she was referred by the special ed teacher for counseling.  The therapist was advised that she may not receive much cooperation from the mother.  Erica's diagnosis at the time was multi handicapped.  The therapist was quite surprised to meet Erica who exhibited very high level autistic behaviors.  When meeting with the mother the therapist asked if anyone had suggested this diagnosis to the parents.  The mother admitted that she had a great deal of guilt around her daughter's disability.  In her culture the kids were just accepted as "slow".  Beyond that she had not had any more specific education.  The therapist explained and investigated the diagnosis of autism with the mother.  She was appreciative to have something more substantial to understand. She became very active with the state autism group and very engaged in her daughter's ongoing education.

Try and keep your appointment regular and consistent

These clients are often juggling a lot and depend on regularity and consistency.  Although on a deep level they know that you are not the answer to the entire puzzle of the disability, you are an important part and they often view each session as a closer step to their child's recovery and functioning.  For parents it may be one of the few times they actually focus on themselves.   When appointments are frequently missed or rescheduled there is a common response of feeling less than important and therapy perceived as unlikely to make much difference.

" It's such a nice day I just can't bear not to be outside."  This 
illustrates one of the most ridiculous things I've heard from a parent with regard to why her daughter's therapy was being canceled: one in which the therapist was clearly not thinking about the fact that this mother had been home bound and unable to enjoy the outdoors for two years due to her daughter's disability and light sensitivity.

This type of excuse is likely to happen when therapists are under contract and only have one session that day or are working in an overloaded system like a school and just need a holiday. We all need a day off but we must consider: are we taking the same day off repeatedly due to meetings, illness, etc.?   This will leave the parent feeling less than important.  Do your best to reschedule.  As a therapist I personally have skipped other meetings at times, putting my client's needs first.  Therapists often get defensive in this area as they feel they are doing everything they can.  It is important to recognize in this matter that we are working with challenges that are only surmountable in baby steps and that every baby step is significant to the parent holding the hope of their child's healing.

As a counterpoint to the above, try and be flexible when the situation requires it.  Know that the disability may cause more than average canceled appointments from the client's side.  Some of these children are subject to the schedules of many professionals.  If one changes a time it is likely to impact others.  If the child has a medical emergency or starts a cold, all of these things will impact the parents' ability to reach you and keep appointments. Consider phone sessions and home visits where possible and appropriate.  I am not suggesting that you do not make the parent responsible for keeping their part of the contract to see you. There are some parents that need a great deal of work in this area and your same rules for missed appointment will apply. It is only necessary to recognize that there will a need for greater flexibility due to the nature of their concerns. 
 

Be flexible in your therapeutic style

Each of these families may take you into an arena previously unknown to you, which may require a rethinking of thoughts and values you once held self evident.  Be willing to open up to new ways of thinking and understanding, your clients are certainly being pushed into this way. Dear Abby has a column entitled A Trip to Holland you will often see posted in agencies that work with people with disabilities. It uses the analogy of taking a trip thinking you are going to an exotic place such as  Paris with its glittering lights, art, foods and culture.  When you get off the plane you realize that you are in Holland.  Although it is not as glittering and flamboyant,  it does have a certain beauty all its own.

Empathy

Be open hearted but do not fool yourself into thinking that you have ever experienced anything like this unless you truly have been a twenty four hour a day caretaker with major sleep deprivation and and uncertainty as to whether your child would live.

Boundaries

Although self disclosure is sometimes helpful in its teaching capacity, these families are already so overburdened they do not need to know of your current difficulties. In comparison most of what we deal with daily is minor.

If it exists  at all, realize that taking care of themselves often comes way down on the list of a parent with a child with high needs. Encouraging a parent to "take some time for themselves" is one thing,  knowing if there are respite providers in your area is another. Even if this service exists the thought of a parent  going out and enjoying themselves if their child is still in an unpredictable or life threatening condition is unrealistic. Give them time to know and trust a support system.  I often will  relate the following story to the over stressed parent to support the need to sometimes just cancel everything and take a break. 
 

Anyway, a rainy day now and then is a great convenience, yes, even a blessing.  Sometimes you get tired in this world and do not know what is the matter with you.  You become disinterested in what is happening, grouchy, irritable, and all that is really the matter is that you are tired.

The story is told of some travelers in South American jungles, who were moving along at a forced pace.  The native guides and pacers were driven to the utmost.  One day the explorer, a white man of international fame came from his tent ready to renew the hurried journey.  But in place of the usual industry, his packers sat on their haunches not making a move to get ready.  All the threatening and pleading he could employ did not stir them.  Their explanation was that they were going to wait for their souls to catch up with them.  They had the hurried sense that was creating confusion in their minds.  The peace of well-timed action was gone.  They were not going farther until that feeling of peace came again.  Furthermore, their leader knew they were right! (Campbell, 211)

Encourage your clients to take a "rainy day".

Know your own limits

These are cases that can place high level of demand on therapist's time and emotion. Know what you can honestly offer and assess your own capabilities in relation to the needs to the case. Also realize that most parents in this situation will not ask a lot from you as they quickly become experts in submerging their own needs to the situation at hand.

Recognize the special issues of siblings

Siblings are often conflicted in their feelings towards each other naturally.  This can be your best buddy or fiercest competitor.  When a sibling is disabled it often elicits intensified feelings of not being the special one or, conversely, guilt or entitlement at being the lucky one.  The child with the disability often does require more time and energy and more helping adults involved in their life.  It is a natural response of many friends to bring something extra for the child with special needs consequently leaving the sibling feeling left out. 
 

Eight year old, Jamal, has an older sister with a disability, which causes the family to move at a slower pace than his general high energy preference. He is very patient and caring with his sister, but as the following dream illustrates he sometimes feels unseen. "I was having a birthday party but all the toys that were given me were things that my sister would like.  Even the birthday party was Barney and the games and tokens were for baby games.  I still was going to play but I lost my tokens. I went to my Mom and she didn't even care to get me more tokens."  This dream was a special gift to the parents who started to make greater efforts to focus more special attention on him.

Encourage the parents to recognize this dynamic and make special time or activities for siblings as well. Sibling support groups are also very helpful. Here children can discuss their anger and sadness at having a sibling who is "not like other kids." By all means normalize this behavior and recognize the truth in their experience. It helps everyone to know that these feelings do come up and to find appropriate means for their expression.Go to the link for Ability Online

Support the parents in their efforts towards empowerment

Support their questioning of all  helping professionals, so that they can best understand and facilitate their child's' healing.  An informed partner with regards to the nature of their child's condition and educational prospects is by the far the best advocate for the child. While the parent must understand the limitations of any one practitioner's time, experience and knowledge, it is not unreasonable for the parent to ask the practitioner for further help and direction in increasing their own knowledge.  Most doctors, therapists and educators welcome the role of parents as partners and facilitators in the healing process.  We must all recognize and agree upon the idea that we are working toward a common goal: the health and well being of the child and family.  We can all work together to create a map for these uncharted waters.

Supervision Issues 
 

Working with interns in these situations it is important to guide and support them in the same issues aforementioned for all helping professionals.

1) Understand the grief process and be attentive to how your issues may be activated.  There is often an urgency among new helping professionals to want  to help and "fix" things.  The grief process and the ongoing process of dealing with a disability or special need is ongoing.  It cannot be rushed or fixed it takes time, patience and support.  Encourage your interns in the skills of active listening and assessment.  If the grieving process is something they are unfamiliar with encourage study in these areas. If there are lingering unresolved issues of loss for the interns encourage their participation in therapy.

2) Learn about the diagnosis and treatment to the best of your ability
Do your best to help the intern in gaining knowledge about the challenge confronting the family.  Again, not in an attempt to fix things but to better understand and support the knowledge and process of the client.   The more you know about the particulars of what the client is dealing with the better you can judge what is a therapeutic issue vs. the nature of the process in which they are involved.  If there are complaints about lack of knowledge on the part of doctors or school staff, they amy in fact be valid and need encouragement and support to advocate for their child.

3) Learn about the local resources 
Helping professionals are often in a special position of being able to identify and access the wide net of social services available to families.  This is often a  helpful adjunct service to a family that may be overwhelmed just attending to the medical needs of the child.

4) Encourage families to be involved with the local parents support network. 
There is nothing like the understanding of someone who has 'been there'.  Encourage your intern to find out if there is a local group of parents with children with special needs in their area.  There are often hotlines sometimes called 'warm lines' that are a comforting shoulder to lean on in hard times.  These groups usually try to connect parents with similar concerns.

5) Try and keep your appointment regular and consistent. 
Interns often have many schedules to keep straight between their internship, school, family and work.  When one of these areas have a vacation or break it is tempting to take off from the internship as well.  This is fine as long as their are not frequent or long breaks from the counseling.  One must honor the importance and impact of the counseling situation for the clients.  If the family is in the midst of an acute crisis the vacation should not be taken or appropriate back up must be arranged.  Leaving a 911 number on an answering machine is not sufficient in this situation.

6) Empathy 
This bears repeating: 
Be open hearted but do not fool yourself into thinking that you have ever experienced anything like this unless you truly have been a twenty four hour a day caretaker with major sleep deprivation and and uncertainty as to whether your child would live.  Conversely, if in fact this is a life experience you share discuss in supervision how sharing this information may be helpful.  It is my experience that it is often extremely helpful.

7) Boundaries 
This is often a prime issue with interns .  I rarely encourage self disclosure with new therapists as it is a complicated and unpredictable intervention.  In these cases except in the instance mentioned above, there are rarely things from the therapist life that are helpful.  Most daily challenges pale in comparison to this challenge.  It may be helpful here to act as an intermediary with the schools or medical practitioners, if it is determined by the family and in supervision that your input may be helpful.  Your presence at an IEP can often be enormously helpful to give a different perspective.

8) Know your own limits 
It is true that we often carry many cases simultaneously.  As much as any family needs we must balance that against our abilities to serve that family.  For this reason we must connect our "high needs" families with community resources.  Interns are often enthusiastic in their efforts and are in the process of learning exactly what their limits are. Supervision and the experience of the supervisor is extremely valuable here.  Time management and reality checks for specific cases and possible outcomes are essential tools.

9) Recognize the special issues of siblings 
This is an area as mentioned above where great help can be gained by families through counseling.  The siblings are often overlooked in these families, not by design, but by the fact that the crisis gets the attention.  There may not be much attention left at the end of the day.  The attention and recognition of this process by a therapist or other helping professional can be extremely validating and healing.  The intern may consider starting a support group for these siblings if he or she has a number of these cases.  It may also be of benefit to see if the school setting could provide such a group.

10) Support the parents in their efforts towards empowerment 
Finally, this is the crux of our therapeutic interventions with most families.  We want parents to be empowered in their efforts to be parents and providers for their children.  We bring with us generations of imprinting on how to best accomplish this task.  Both intern and seasoned professional must look at their own issues around 'good parenting'. This process starts in our own therapy , our education and continues into supervision and throughout our practice. 
Into that concept we add extraordinary circumstances and may come up with new levels of understanding and respect for the human spirit.

With all of these considerations and skills in hand, we may guide the next generation of therapists through these uncharted waters of human experience. 
 

Phoenix Helm Simpson, LMFT, MFCC is the mother of a child with special needs and has worked with people with special needs and their families for twenty years. 
 

Bibliography

Campbell, Sam.  A Tippy Canoe and Canada Too. New York Bobbs-Merrill Company, 1946.

Juster, Norton. The Phantom Tollbooth. New York:RandomHouse,1996

Thompson, Charlotte E. Raising a Handicapped Child: A Helpful Guide for Parents of the Physically Disabled.New York: Ballantine Books, 1986.

Sullivan, Tom.  Special Child , Special Parent. New York: Putnam Books . 1996.