Traductor


http://www.google.com.mx/language_tools?hl=es

Stresses on Families
http://www.patientcenters.com/autism/news/stress_family.html

----------------------------------------------------------------------
----------
The following excerpt is taken from Chapter 10 of Autistic Spectrum
Disorders: Understanding the Diagnosis and Getting Help by Mitzi
Waltz, copyright 2002 by O'Reilly & Associates, Inc. For book
orders/information, call (800) 998-9938. Permission is granted to
print and distribute this excerpt for noncommercial use as long as
the above source is included. The information in this article is
meant to educate and should not be used as an alternative for
professional medical care.
----------------------------------------------------------------------
----------

Withdrawal and overinvolvement

Burnout and respite

Resentment

Genetic blame

Parental neuropsychiatric problems

Siblings

Lack of family support

Community isolation

Financial problems

Family therapy

Separation and divorce

Single parents

Multigenerational living

Noncustodial parents

Adoption and foster care

Withdrawal and overinvolvement
In some families with a disabled child, one parent tends to stay as
remote from the situation as possible whereas another's involvement
borders on obsession. The withdrawn parent may be just as concerned,
but either doesn't have the coping skills or has delegated
responsibility to the more involved partner. Generally-but not always-
fathers tend to withdraw, and mothers tend to jump in with both feet.

My relationship with my husband is changed due to his (and most
males', I'm finding) lack of whatever it takes to deal with this
disability.
--Holly, mother of three-year-old Max (diagnosed PDD-NOS and apraxia
of speech)
This situation is not healthy for either parent, nor does it really
benefit the child. Parents need to keep the lines of communication
open, even when job responsibilities and schedule conflicts force one
partner to be more directly involved in activities like in-home ABA
training, attending school meetings, or talking with doctors.

Set up a time each week to talk about events and, perhaps more
importantly, feelings and frustrations. Try to find ways to keep the
parent who has a tendency to pull back actively involved. Perhaps
that parent can take part in some rambunctious play time while the
other fixes dinner, or can take on a special weekend activity, such
as Scouting, team sports, or a hobby. The trick is to actually
schedule these activities and make sure that they happen. It's a rare
pair of parents who are absolutely fifty-fifty in their involvement,
but for the sake of their partnership, the most-involved parent needs
to know that there will be regularly scheduled break times ahead.

Burnout and respite
What happens when break time doesn't happen? Burnout. No matter how
much you love your child, there will be a day when your batteries
just quit. Single parents, and couples who have a very unbalanced
system of sharing responsibility for their child with a PDD, are at
high risk.

Anyone who's ever had a horrible job knows the symptoms of impending
burnout. You start feeling hopeless, numb, resentful, and angry, all
at the same time. You may get physically ill, suffering from an
increase in headaches, stomachaches, bowel complaints, and fatigue.
You start fantasizing about running away.

Sadly, some parents really do run away--away from their share of
responsibilities, away from their marriage, even away from their
child.

His father simply saw him as flawed, and never became involved in
searching for an answer or diagnosis. He abandoned me, Kevin, and his
younger brother Jonah when the boys were seven and five,
respectively. After I fought through the courts for support, he
surfaced for occasional visits, but lives out of town. He never asks
what is wrong with his son, and isn't careful with him when they are
out in public. Jonah, who is thirteen now, "parents" his brother when
the three of them are together.
--Cindy, mother of fifteen-year-old Jeffrey (diagnosed verbal
dyspraxia with "autistic-like" features)
Don't let this happen to you or your partner. It's okay to say that
you're overwhelmed. Only then can you look for a way to remedy the
situation. If you have trouble doing it on your own, a good family
counselor can help you set up a schedule that gives you some time off
to clear your head, take a class, or just enjoy a quiet cup of tea or
a game of golf. Usually it doesn't take much to lift the burden of
your day-in, day-out duties--but you do have to ask.

Like Jeffrey's father, some parents deal with feelings of guilt,
embarrassment, and shame with denial. These feelings are anything but
easy to work out--particularly for men (or women) who have trouble
articulating their emotions. A little understanding can go a long way.

Single parents, and couples who want their time off to be time
together, should access respite-care services if they are available.
Respite providers are trained to care for disabled youth and adults
for the afternoon, overnight, or even during a family vacation.

Dhylan is very hard to manage at times, and therefore we don't go out
without him (kind of like the American Express card). We just applied
for respite care and are hoping we get it. A break is so important.
--Sally, mother of four-year-old Dhylan (diagnosed PDD-NOS with
autistic features)
Respite care may be available at no or low cost through community
agencies, public or private. A county caseworker or local disability
organization should be able to put you in touch with respite
resources in your area.

As an alternative, perhaps you can set up an informal respite
arrangement with one or more parents of children with disabilities in
your area. For young children, play-group co-ops can be a great idea,
and they're one that many parents are already familiar with. The same
concept can work with older kids and even adults cared for at home
too, and can be extended to cover overnight care and occasionally
longer visits.

If you have the financial resources, of course, you could hire
someone with appropriate training to provide respite services in your
home on occasion. If a nearby college has a special education degree
program, students may be able to earn extra credit and gain valuable
experience, as well as earning some money, by caring for your child.

Summer day-camp programs, overnight camps, "parents' night out"
programs, and other options are also available for giving yourself
some much-needed time off. It's not a selfish thing to do at all; in
fact, avoiding burnout is an essential part of being a good parent
for a child with PDDs. The sanity you save may be your own!

Resentment
Resentment is an ever-present emotion in families affected by
disabilities. Unfortunately, it usually festers away in private, only
surfacing when an argument crosses the line of civility. It's hard
not to feel resentment when this diagnosis can take so much away from
your life: free time, undisturbed sleep, quiet mealtimes, the ability
to go places with your old friends and their "normal" children,
community approval, financial security ... the list goes on.

My husband has had to put off finishing school and finding a career
in order to stay with my son during the day. He feels some resentment
towards that, but now we have the common goal of our son to keep us
warm.
--Shayna, mother of three-year-old Max (diagnosed multisystem
developmental disorder)
Resentment is the result of feeling like you're not getting a fair
shake, so it's important that any suffering that's being done for the
child's sake is validated by other family members. No one should feel
like a silent martyr (and with any luck, no one will act like one
either).

Siblings may harbor more resentment toward their disabled sister or
brother than they're willing to admit. We'll discuss this in
the "Siblings" section later in this article.

Genetic blame
Family problems are often compounded by the red herring of "genetic
blame": whose crummy genes caused this PDD problem, anyway? You would
be surprised at how often this unspoken issue underlies arguments
that only appear to be about disciplinary methods or parenting style.
When it finally comes out into the open, watch out!

Parents and relatives all need to know that PDDs are neither rare nor
exclusively found in your respective families. You could not have
predicted that your child would have this diagnosis, not even if you
had discussed every unusual relative in your respective family trees
before procreating. Nor could a professional genetic counselor have
been of much use.

It may also be useful to remind each other about what's good in your
genetic heritage or your partner's. The same side that passed on the
genes for PDDs probably also passed on many wonderful
characteristics, which hopefully your child will also share.

Also, make an agreement with your partner early on that if your
parents or other family members try to start a genetic blame
conversation, you will nip it in the bud immediately.

Parental neuropsychiatric problems
Some real parenting issues do stem from genetic heritage. Autistic
spectrum disorders are, at least in part, inherited disorders. It is
not uncommon for one or both parents to have neurological
difficulties of their own, and these may make it even harder to raise
a child with an ASD.

Some professionals have said that a few of Bruno Bettelheim's "cold
and distant" mothers of autistic children may have actually been
suffering from mild forms of autism themselves. Certainly, parents of
children with PDDs have a slightly higher incidence of depression and
other mental disorders, as well as a higher incidence of health
problems in general, perhaps related to an underlying immune-system
dysfunction. Some of this may be genetically based, although some may
derive from being in a difficult situation.

It's best to be open about these problems with your medical provider.
Medical care and counseling for your own neuropsychiatric problems
can help you feel better, and that alone will make you a better
parent. You will be more available to your child, more patient, and
less easily stressed.

Unfortunately, it isn't always to your advantage to let state or
school authorities know if you are experiencing mental or physical
problems. There are many people in social services and education who
have negative attitudes about parents with psychiatric or
neurological diagnoses. They may not take you seriously when you
discuss your child's needs, and in some cases you may even be in
danger of losing your children.

Siblings
When a child is in crisis, the everyday problems of her brothers and
sisters seem to recede into the background. Reactions differ.
Siblings may become superachievers to get their share of the
attention--or they may seek negative pursuits, for the same reason.

Resentment is also a natural reaction when another child in the
family takes more attention and more financial resources than you do.

Our child's siblings are wonderful with him, however, they do
sometimes feel that he gets away with more. But so far we have been
able to talk this out with them.
--Julie, mother of four-year-old Sean (diagnosed PDD-NOS)
Problems faced by the siblings of disabled children are beginning to
get more attention. Books are available that discuss typical
reactions. One of the best is Views from Our Shoes: Growing up with a
Brother or Sister with Special Needs (Meyer, Woodbine House, 1997).
It's an excellent guide to sibling issues, and it's written from the
children's point of view.

Chat groups and workshops can also help. You may be able to get your
other children involved in SibShops, which are part of a Seattle-
based sibling-support project. SibShops and similar workshops give
siblings a chance to meet other kids their age who share their
situation. With a little help from adult facilitators, these
workshops can help siblings talk about their feelings and fears.
Friendships are frequently a nice side effect.

You can find an international directory of sibling support groups,
including SibShops, at
www.chmc.org/departmt/sibsupp/sibshopdirectory_map.htm. This site
also has links to a variety of online and offline resources for
siblings.

The behaviors of people with ASD can be difficult for siblings to
deal with. If your child has behaviors that are aggressive or
assaultive, dealing with these is the first order of business. It's
not fair for your other children to be at risk for actual harm. If
you need this kind of help, call a behavioral professional
immediately.

You may need to take special steps to safeguard the personal property
of your other children, and to ensure that they have a quiet place to
get away from your disabled child's tantrums, loud noises, or
intrusive behaviors. Some of the solutions are not things that most
parents would normally want to do. Possibilities include putting a
keyed lock on a child's door, situating children's bedrooms as far
apart in your home as possible, and providing niceties like a
telephone, television, computer, or stereo in the child's room (or in
a lockable family room) to permit their uninterrupted use. You'll
have to set rules for the use of these devices that prevents the
sibling from withdrawing into couch-potato land, of course.

It goes without saying that a fair share of your time is far more
important than possessions, space, or even privacy. It's essential to
make some special time for your other children. Some parents have a
meal out, go to a movie, or enjoy an activity with their other
children each week, and swear by the results. Ensure that your other
children can find time to talk with you about school, friends, ideas,
and concerns, without interruptions from your child with a PDD. You
may need to be flexible about bedtimes one night each week, allowing
another child to stay up just a bit later than usual to enjoy some
one-on-one time with you. Another way to carve out time is to wake
one child up a bit early once a week for a cup of cocoa and some
quiet talk.

Your extended family may be able to help by taking up some of the
slack. Grandparents, aunts and uncles, or older cousins may be
available to take on some minor duties, such as transporting another
child to soccer practice twice a week. Some grandparents may even be
willing to fund enrichment activities or excursions together. Many
families have special friends or neighbors who might be willing to
get more involved, if you ask--this system can work out very well if
you can recruit the parents of a sibling's friends. Family friends,
and other trusted adults in the community, can act as mentors and
advisors, and help your other children pursue personal interests.

Most siblings do have worries and questions about ASDs, and they may
be afraid to talk to you about their fears. Children are exquisitely
sensitive to family stress, and they don't want to burden you with
more. It's essential for their well-being that these issues be put on
the table, though. Common fears include wondering if their sibling is
going to die from his illness, worries about possibly dangerous
medication, feeling different from other children who don't have a
disabled sibling, being teased because of their sibling's odd
behaviors, and fear that their parents are unconcerned with their
needs because of the other child's demands.

Quality information is the key. There are some films available that
can help you start the conversation. What's Eating Gilbert Grape?,
starring Johnny Depp and Leonardo DiCaprio, is a particularly good
one, as is the Dustin Hoffman-Tom Cruise film Rain Man, although both
portray individuals with more severe forms of autism. Short videos
for siblings may be available through disability advocacy
organizations as well.

There are quite a few children's books on autism. For siblings of
severely affected children, these can be great. For those with
brothers and sisters who have milder forms of autism, these can be
more frightening than reassuring. They may fear that their sibling
will become "worse," like the child in the story, or they may not
identify their sibling with the more severely autistic child at all.
Teens often find books by high-functioning autistic writers like
Donna Williams or Temple Grandin interesting and informative.

Adolescent and adult siblings may resent the very real impact on
their future of having a brother or sister with a disability. As
Joe's quote in the section "Financial problems," later in this
article, illustrates, siblings may lose out on a lot, including
opportunities for higher education, participation in community sports
leagues, music and dance lessons, having a car, or (as explored to
tragi-comic effect in Rain Man) receiving an inheritance.

They may also fear that as their parents age, they will be expected
to take on increasing responsibilities for their sibling--and this is
not an unreasonable worry. You may indeed need to pass on
guardianship at some point. Your expectations should be discussed as
early as possible.

As siblings approach the teen years, where family conflicts can get
especially difficult, parents will need to ensure that each child has
activities that give him a chance to shine on his own. School
activities, religious youth groups, and volunteer organizations can
be good choices if money is tight due to medical bills.

Lack of family support
If it takes a village to raise a child, some extended families of
autistic-spectrum children don't see themselves as part of that
village.

As far as the extended family, most of them act like Doug doesn't
even exist. That's mainly on Doug's father side of the family. On my
side, Doug is just kind of "there," nobody really does much with him.
I don't have much help or support from them.
--Debbie, mother of eleven-year-old Doug (diagnosed PDD, fragile X
syndrome, and sensory integration disorder)
You ought to be able to turn to your own parents and other relatives
for support and encouragement, but it isn't always possible. Many
families of people with PDDs find that their child is passed over for
family activities, such as invitations to grandmother's house for
Christmas or trips to the mall with siblings. Some family members
even neglect to send birthday cards.

Sometimes the problem is simply a deep-seated prejudice against
disabled people, and you can't do much about that. Often it's related
to a lack of adequate information about the child.

It has been a source of tension in the family because, with my son at
least, diagnosis is not clear-cut. He is not classically autistic and
is, in fact, very affectionate and related to his family, both
immediate and extended. There are those in the family who think
nothing is wrong and say we are stigmatizing him by seeking help.
There are others who think he is just poorly disciplined and out of
control.
--Jennifer, mother of three-year-old Joseph (diagnosed atypical PDD)
It might make you feel uncomfortable to do so, but you can share
evaluations from your child's school or doctor with the family member
(s) who seem to question the disability's existence. Some parents
have even brought a grandparent along for a psychiatrist or doctor
visit, with hopes that hearing the diagnosis from an expert in a
white coat will help it be accepted at last. You might want to
discuss this possibility with one of your most accessible
professionals, perhaps asking that they deliver some suggestions for
helping your child along with information about the disability.

Community isolation
All it takes is one embarrassing episode in the checkout line or at
the public park to make the average parent want to crawl under a
rock. Every time the worst happens, the impulse to withdraw from
public life is amplified.

We cannot do anything with him, except go for car rides (this calms
him), walk with him (he needs the motion), and bring him to the
playground. He prevents people from talking to each other with his
noise and disruptions. He is not communicative, he is hyperactive,
and he makes weird noises. We cannot even bring him out to eat. We
try to shop in the early morning when the stores are empty.
--Joe, father of seven-year-old Kyle (diagnosed PDD with autistic
features)
One of the most difficult areas for family members of people with PDD-
NOS or atypical PDD is dealing with rude or clueless remarks from
strangers. Children with PDDs are rarely beneficiaries of the
sympathy factor. There's no wheelchair or leg brace to signal "this
is a disabled child," so onlookers may assume that they're witnessing
willful misbehavior. Some are quite vocal about letting parents know
it, which can do a number on your self-esteem.

Some people carry cards explaining the problem that they can give to
busybodies. Others have a canned speech for these situations, such
as "My daughter has a neurological problem that can cause [insert the
unusual behavior of the moment here]. I'm sure you understand."

You may be tempted to add, "In other words, she's disabled. What's
your excuse?" although it's probably not a good idea. You may also be
tempted to avoid the problem altogether by disappearing from public
view. But isolation is a breeding ground for depression, and it does
a child with social deficits no favors, either. But what about
parents?

It's sadly true that the friends you had before your child's problems
became evident may fall away. You'll have to be the judge of whether
the cause is fear, prejudice, dislike of your child, or simply the
fact that you have less free time to spend with friends than you used
to. Disability support groups are frequently a source for new, and
potentially rewarding, friendships. On the other hand, you may
struggle mightily to hold onto friendships that have no relationship
to PDDs, just to avoid having your child's disability permeate every
aspect of your life.

As for being included in community activities, such as attending
civic events or religious services, you will probably have to turn
educator to make a place for your family. Some religious bodies do
have formal programs for including people with disabilities in
services and religious life. Check at the national, regional, or
diocese level to find out what's available. Religious life is one
area that many parents interviewed for this book cited as an island
of acceptance in the larger community.

Other interest groups, from car clubs to the Grange to volunteer
organizations, may also be able to find room for you, either with
your entire family or as an individual participant. Be direct: ask
how your child (or your hectic schedule) can be accommodated.

In the US, the Americans with Disabilities Act (ADA) was passed
specifically to ensure that people with disabilities have equal
access to community life and facilities. If your child's condition is
causing discrimination against your entire family, the ADA covers
you, too. The European Community charter and some European countries
have similar regulations--and legality aside, full inclusion is
certainly the ideal that people everywhere should aspire to. Don't be
afraid to assert the natural right that you, your child, and your
family have to participate in everyday life whenever possible.

Financial problems
PDDs can be a financial drain, and that's a family strain. Parents do
cite money woes as a major source of family stress.

We've spent about $11,000 out-of-pocket in four years! We had to
recently use our home-equity line of credit to pay for this, and
haven't been able to save money for our older son's college (we have
four kids, ages seventeen through seven). We rarely can afford nice
vacations, music lessons for the other children, etc. I drive a car
with 200,000 miles on it because we cannot afford a replacement.
--Joe, father of Kyle
As this father's words indicate, money problems are about more than a
low bank account balance. Other family members may miss out on
important opportunities or do without some material things. Unless
the situation is thoroughly and regularly discussed with them, they
may not understand why the person with PDD's needs are costing so
much, and why they are a family priority.

Social services programs are both a source of assistance and a source
of financial difficulty for many families. Job choices and saving
money for future needs may be jeopardized by these programs' earning
and property rules. Parents who want to take advantage of these
services and still meet their responsibilities to their other
children (not to mention to themselves) may need specialized
financial planning

Family therapy
Finding professional help for family problems isn't always easy when
a person with a PDD is part of the equation, because few family
therapists know much about neurological disorders. The wrong
therapist can cause irreparable harm by once again blaming the
parents for the disorder, looking around for nonexistent sexual
abuse, or inflaming feelings of guilt or resentment in one partner.

The last thing we needed was for the therapist to goad us into a
fight during the session. We are dealing with an incredible amount of
stress. At the end of the hour, he got to leave. We got to go home
steaming, our problems still unresolved. When we hadn't gotten around
to talking about making any positive changes after three sessions, we
decided to call it quits.
Parents interviewed for this book cited many negative experiences
with traditional models of family therapy, particularly when sessions
were conducted by inexperienced or "old-school" personnel. Parents of
autistic-spectrum adults interviewed for this book had particularly
heinous tales to tell from the "bad old days." But in the hands of a
competent, experienced professional, family therapy can be a positive
growth experience for people dealing with PDDs.

My main sources of strength are the autism newslist on the Net and
the other parents at therapy.
--Dorthy, mother of five-year-old Jesse (diagnosed PDD-NOS with
autistic tendencies)
According to parents who have tried family therapy, there are two
models that seem to get the best results: "whole family" approaches
that may include working separately with parents, siblings, and the
patient, then bringing everyone together on a regular basis to hash
out interpersonal issues; and group therapy sessions that involve
several parents. The latter can provide families who are new to the
diagnosis with a built-in support system, and participants in well-
run groups report a growing sense of confidence as they, too, are
able to pass knowledge on to others.

The focus of either approach should be less on "fixing" dysfunctional
family systems than on empowering family members with new coping
skills and providing a safe place to work out conflicts. Some
therapeutic groups for parents operate more like parenting classes,
with speakers invited in to discuss various topics of concern to the
group.

Separation and divorce
Marriages suffer when a child is disabled. The legal aspects are
beyond the scope of this book, but it is important that parents of a
child with PDD-NOS or atypical PDD who do choose to end their
relationship take the child's special needs into account.

Issues may include:

Custody arrangements that allow both parents access to the child and
respite. These arrangements may constrain the parents from living too
distant from each other, which can be a difficult situation.

Financial settlements that take into account the added expenditures
needed to care for a disabled child, possibly including extended
alimony for a stay-at-home parent.

Financial arrangements to ensure that both parents will be
responsible for the child's needs after the age of eighteen (most
divorce decrees only cover support until the age of legal majority).

Written agreements about which parent will pay for medical bills,
tuition, therapy, and other expenses related to the disability, and
to ensure that health-insurance coverage is maintained.

Special agreements may be needed if the divorce is due to abuse,
neglect, or substance abuse by one parent, in order to protect the
child.
There's very little good that can be said about families splitting
up, unless it's for reasons of safety. Parents should simply do their
best to ensure that each partner's relationship with the child(ren)
is maintained. Professional help, either in the form of social-worker
aid or family counseling, is strongly advised.

Single parents
Couple problems are plenty of trouble, but it's trouble that those
going it alone sometimes wish they had. No matter how ineffectual one
half of a couple is, your partner is still an adult sounding board
and a shoulder to cry on.

Single parents also face increased financial pressure, and have a
terrible time getting meetings with school districts, doctors, and
other helpers to fit into their schedule. Voicemail, pagers, email,
and fax machines can be the single parent's best friends. You may
also try to fit several appointments (school, psychiatrist, and
pediatrician, for example) into one day off work. If your child has a
low tolerance level, however, the results may not be great.

Some therapists do offer evening and weekend hours, and school
districts can often be convinced to hold early-morning meetings. You
may need to work with an advocate who can represent you at meetings.
A friend, relative, sitter, or professional hired specifically for
the purpose may be able to take your child to medical appointments.

And don't forget to take some time out for you--if you can find it!
There's nothing like a child with a PDD to stop any semblance of a
post-breakup love life. The time commitment alone may take you away
from the dating world for years, and explaining what your home life
is like could turn off a potential mate.

Theron's behavior problems keep me from finding a partner to share my
life with, as his father left six years ago. His two younger brothers
have many of the same problems, though not the same diagnoses, so my
attention is divided fairly equally amongst them, none for me!
--Ann, mother of eight-year-old Theron (diagnosed PDD-NOS, psychotic
disorder, borderline intellectual functioning)
Single parents have more reason than any others to seek allies in
their extended family or community. Respite care and quality after-
school care are absolute necessities. Foster grandparents programs,
Big Brothers, Scouting, religious institutions, and parent groups can
all be part of your web of support.

Multigenerational living
If you're part of the "sandwich generation"--caring for children and
aging parents at once--your family also faces extra stress.

Older relatives in the home can be a wonderful addition to your life,
but if they have many medical needs of their own or can't handle the
behaviors of your child with a PDD, the situation will eventually
explode.

An extra pair of hands is a must in these situations. In the US,
Canada, Britain, Australia, and most parts of Europe, home health
aides are available for frail or disabled elderly people, even when
they are cared for by their children. Private social-service agencies
and religious institutions may also be able to provide assistance.

Housekeeping help may give you more time for the important stuff, if
you can afford it. Again, volunteer help or public assistance may be
available in this area. Contact your government department for
services to the elderly for more information, and be sure to explain
that you have the extra burden of caring for a disabled child.

As with siblings, you may need to take special care to ensure that
older relatives are safe from aggressive or assaultive behaviors, and
that they can secure their possessions and peace of mind. Locks,
latches, intercoms, and soundproofing can help in some situations.

Noncustodial parents
In some countries, and in some US states, parents are told that they
must give up legal custody of their child to the state if he needs
publicly funded residential services. Disability advocacy
organizations can help you sort through various options.

Giving up custody need not mean having no input. However, some
programs are so unused to parental involvement that they aren't sure
how to include family members in the lives of their institutionalized
clients. Set up a meeting to discuss the ways you can help your
child, activities you want to continue to share and, if applicable,
issues related to financial management and personal safety.

Although full independence is every parent's goal, some adults with
PDDs do continue to need help and oversight long after the age of 18
or 21--and retaining a close relationship with one's parents is
valuable in and of itself. Custody issues can get in the way here,
however. Once your child has reached the age of majority, you don't
have the right to determine her medical care or to control any other
aspect of her personal life. You may find yourself shut out of
important decisions about housing, food, medical care, education, and
vocational choices. If your child is able to handle these choices
alone, that's great, even if you don't always agree with her
decisions. For many families, the problems occur when the adult
child's friends, therapists, or professionals with various programs
start calling the plays. You may not be sure that your adult child is
in agreement with these decisions, and sometimes these individuals
will deliberately try to prevent you from having access to the
decision-making process. Your input can help ensure your child's
safety and keep his personal needs met. You may need to take legal
steps to make sure that you stay in the picture.

Divorce can also prevent parents from retaining full custody. Both
parents' level of personal and financial involvement should be
written into the divorce settlement. If the settlement is
unsatisfactory, or you are being prevented from involvement in your
child's life, you will need legal help to assert your custodial
rights.

Medical care is a frequent sticking point. If parents disagree about
the right medical approach (for example, if one is totally opposed to
using medications and the other is not, or if one prefers a
traditional approach while the other is into alternative therapies),
they may need to use the services of a counselor or arbitrator to
work things out. Alternatively, parents may be able to agree on a
practitioner or program, and simply agree that both will abide by the
recommendations of this third party.

Worst of all is the situation of having your children forcibly taken
from you. This has happened to parents of children with neurological
disorders when uninformed social workers thought the child's behavior
resulted from abuse, especially when the disorder had not been
diagnosed before the action took place. Parental neuropsychiatric
problems are often a complicating factor in such cases. Of course,
families of people with PDDs are not immune to abuse, neglect, or
parental substance-abuse problems, either.

If you feel that you are at risk of losing custody of your child to
the state or to an ex-spouse, do not delay in seeking legal (and
medical) support. Disability advocacy organizations may be able to
provide you with advice and, in some cases, legal assistance.

Adoption and foster care
Although hard numbers are not available due to confidentiality laws,
it's well known that childhood disability is a major factor in
adoption and foster care placements by natural parents. Some simply
don't have the knowledge or resources to take care of a child with a
potentially lifelong disability. Tragically, these children are among
the hardest to place. Parents who step up for this duty deserve a
medal and may need special support.

Stevie was originally diagnosed as deaf, which is why I got him, as I
sign. He was three and a half years old when first diagnosed with
autism. I'm in the process of adopting him. His deprivation was so
severe we aren't sure just how much is the autism and how much is the
deprivation.
Unfortunately, Early Intervention wasn't an option in his case. All
diagnosis, progress, services, schooling, etc., started 21 months
ago, when he came to live with me.

Finding community resources has been the biggest thorn in my side. We
are hooked up with a regional center that tends to pass the buck to
the foster agency or school district until the adoption is final. Our
FFA [foster family agency] has not been helpful in any way. No
backup, no help finding babysitting services, it all falls on me. I'm
not complaining, honest, I wouldn't trade my life now with Stevie for
anything!

As I am raising Stevie as a single mother, I can tell you that I have
depleted most of my savings and live hand-to-mouth many months. Even
though I receive a monthly stipend for him, it hardly covers the cost
of shoes! It's a great struggle, but I have great faith and trust in
a Higher Power ... if I didn't, I couldn't survive.
--Roni, foster parent, and soon to be adoptive mother, of five-year-
old Stevie (diagnosed atypical autism)

Some foster-care and adoption agencies that work with special-needs
children have more to offer than Roni's. Private agencies for the
disabled could help those that do not, but communication between the
public and private sectors is apparently difficult. Parent support
groups and disability advocacy groups can sometimes provide a bridge
between the two.

Some parents of children with PDDs may have to place their children
in a therapeutic foster home, either temporarily or permanently. This
type of foster-care arrangement is set up to provide specially
trained round-the-clock caregivers for medically fragile or disabled
children who cannot be cared for at home. Typical reasons for
placement may include assaultive or aggressive behavior that
endangers parents or siblings; a parent's disability, incarceration,
or death; or difficult medical issues, such as tube feeding.

With temporary foster-care placements, the goal is usually to wait
out or find a solution for the situation that led to placement.
Natural parents must stay as involved as possible--it's very
important to attend all meetings and therapy sessions when your child
is in foster care, even if the placement was voluntary. Lack of
participation can lead to the termination of parental rights in some
cases.

Natural parents also need to maintain oversight of the child's
medical, educational, and personal needs during the foster-care
placement. Foster-care arrangements vary in quality, ranging from
homes you wish you had grown up in to the worst of abusive
environments. Most therapeutic foster parents are quite good, however.

If the foster placement is in another city, you may need to secure
assistance to make regular visits, or send an advocate to make visits
for you. Regular communication by mail, email, and/or telephone with
your child should be assured when distance is an issue.

It's sad that in the US, foster-care placement is sometimes chosen as
a way to ensure the delivery of essential services to children.
Foster parents merit a stipend to pay for the cost of the child's
care, and the child receives publicly funded healthcare and mental
health services. In a better world, natural parents could receive the
special training provided to therapeutic foster parents, as well as
the subsidies and services they need to care for their difficult
children. In all of the nations of Europe, and in many other parts of
the world, parents of disabled children are guaranteed financial
assistance, healthcare for their child, and other services.

*-*-*-*-*-*-*-*-*-*-*-

Bonito día

http://mx.geocities.com/la_casita_del_autismo/alma.html