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.
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 The withdrawn parent may be just as concerned, but either doesn't have the coping skills or has delegated responsibility to the more involved partner.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.
mother of three-year-old Max (diagnosed PDD-NOS and apraxia of
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.
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
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"
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
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 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
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.
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.
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
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.
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
--Julie, mother of four-year-old Sean (diagnosed
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
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
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
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.
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
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.
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
--Joe, father of seven-year-old Kyle (diagnosed PDD with autistic
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
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.
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
--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
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
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
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.
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
- 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.
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
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
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
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
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.
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
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
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
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.
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
--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
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.