Parenting a child with special needs - By Jill Curtis
As a parent of a child with a disability or with
special needs you will be only too aware of all the challenges you encounter when you try to get the best help you can for
Sadly the list of problems faced by so many children, and their families, never seems to end. Each disability
brings with it its own special concerns, but there are many issues which parents share in common.
There is understandably
the shock and disbelief on learning that your child is in anyway disadvantaged or handicapped. It is very hard to accept that
this is so. And quite usual at the beginning for parents to block from their thoughts the fact that their child is going to
need extra help and will have to be cared for in a special way, perhaps for life. It is as if denial of the problem will make
it go away. If only that were so.
The gradual acceptance of the situation is very painful. You may still be agonizing
over the question of whether you or your partner are somehow to blame for your child’s condition. All parents go through
this kind of anguish. There is a desperate desire to blame somebody.
You may already have felt the deep anger experienced
by almost every mother or father in this situation that it should be your child who will have to struggle with a physical,
an emotional, or a mental disability. You will be know the sickening fear of wondering if you can cope with what you are hearing.
all families wish to do the best for their child, often against tremendous odds. And top of the list for most parents must
be to find the best healthcare available. But parents so often run up against a brick wall when trying to get a diagnosis
about what is happening to their child. Some physical handicaps are recognized from birth, some children develop an illness
which produces them, while some disabilities are more insidious and gradually become apparent as the child gets older and
reaches different developmental milestones. It can often be difficult at the beginning to put your finger on just what is
worrying you about your child. It can be even harder to know where to turn for guidance or information, with the result that
you feel totally lost, and quite alone with your distress.
We all like to think that in our ‘caring society’
today all the help which is needed is on offer. Unhappily that is not usually the experience of mothers and fathers who desperately
seek the advice and support they need to help their child in the circumstances I am discussing.
What is the best way
to proceed? The first thing is to get as much information as you can about the specific condition which has aroused your concern.
Today with the Internet there is more detailed information available to us than previously. Once you can arm yourself with
some knowledge about your child’s needs you are in a stronger position to stand firm against the red tape and possible
indifference you may meet on the road ahead.
The more facts you have at your disposal, the more confidence you will
have to speak up for your child. This is important from day one, and will become even more so when there are battles to be
fought about education and other help required such as physiotherapy, occupational therapy, speech and language therapy or
psychotherapy. Lack of funds is often given as an excuse why some services are not available. Don’t take this lying
down. Ask questions, and go on asking them.
Guidance about how to handle certain behavioural difficulties may be needed.
If a child has to deal with the frustrations of not being able to communicate or do things which other children are able to,
this can often burst out in uncontrollable rage.
You may need help in getting the right equipment, finding ways of
entertaining your baby or child, and even in gaining some respite for yourself. Don’t fall into the way of thinking
that only you, and you alone, can care for your child. A worn-out parent will be little help, and especially if you have other
children to care for it must be kept in mind that they need time with their mum or dad too. So get assistance before you crack
under the pressure.
Remember, too, that having a child with special needs can put an additional strain on any marriage,
so try your hardest to get out from the home together for a little while, even if only for the occasional meal. Make sure
you talk to each other about your fears and worries. Talk to other people too. Talk to the neighbours, talk to the local school
and any local groups. Set up a rota of family or friends who will give you a short break. Look for local charities and organizations
who will be only too glad to find people to help you and your child. This will have the added advantage that it will gain
local awareness for a particular disability. Ask at the local schools or colleges if some of the older pupils will come in
and play with your child for a while.
Try to link up with an organization which has specialist information about your
child’s disability. You will find the tips they can give you will be invaluable. Make sure you know your child’s
rights about education, and search out information about Special Needs’ playgrounds. Chat online to other parents who
share your concerns, and learn from other parents who have already fought some of the battles which you foresee ahead. One
parent said to me this week ‘My advice for new parents? Tell them never take "no" for an answer’. So find your
voice and make yourself heard - whether it is to a medical, or educational professional. Your child deserves nothing less.
the Internet you will log onto information about all kinds of disabilities, as well as getting backup for yourself as a parent,
so click onto any support group you can.
© Jill Curtis 2003
When a Child With Special Needs &
Complex Disabilities Surfaces with Behaviour Problems - By Gary Direnfeld, MSW, RSW
Some children present with an abundance of
challenges involving academic functioning, communication and physical difficulties. Combined these children face a remarkable
struggle keeping up with their peers.
Parents of these children are faced with juggling the competing presenting needs
of the child and are often entwined with a variety of service providers including psychologists, speech-language pathologists,
occupational therapists, special educators, medical specialists and the like. When behaviour issues arise, the parent may
be caught cycling through the service providers seeking the most appropriate remedy to the problem. For many, the behavioural
issues escalate when the child is between six and eight years of age.
Six to eight year olds are typically in grades
one, two and three. At some point through this time, these children are likely enjoying increasing integration with their
peers. The theory here is that integration de-stigmatizes their disabilities and normalizes disabilities for the mainstream
children. Establishing these children with the mainstream children also provides them with role models in terms of normal
development and provides an opportunity to keep up with their peers.
Often missed or poorly appreciated it the amount
of energy a child with complex disabilities must expend to keep up mentally and physically with mainstream children. Hence
these children, owing to the extra energy required will fatigue sooner than most other children. It is then that some will
surface with behavioural difficulties.
In view of the broad array of service providers, the behavioural difficulties
will likely be met with behavioural approaches to management. The parents and teachers will be instructed on various reward
regimens and then if that fails, punishments may be suggested as deterrence to problematic behaviour. Sadly though, behavioural
issues often continue. The next line of intervention usually involves therapy for the parents to ascertain and treat any issues
presumed to arise therein. The thinking may be that parental guilt or marital issues are intruding on the child and their
However, it may be advisable to hark back to the amount of energy required for these children to keep up with
their peers. It is likely in view of fatigue, many of these children just cannot hold themselves together behaviourally. In
other words, their fatigue surfaces as problematic behaviour. It is often the case that these children cannot express themselves
well, let alone when they are tired. Further, to admit to fatigue could take them away from their activities.
whose children with special needs and complex disabilities are surfacing with behavioural problems are advised to structure
a nap or rest period in the early afternoon each day at school. Many parents will think this an odd strategy having long since
dispensed with naps for children of this age. However, now in the school context with an increased expenditure of energy,
many of these children need extra rest to recharge themselves. It is likely that after such a rest, the child will return
with a renewed vigour and problematic behaviour will simply evaporate.
An early afternoon nap is a benign intervention
and a good place to start when working with a young child with special needs and complex disabilities who presents with behavioural
While they’re at it, it might just do the parent, teacher or caregiver a world of good to join them!
Direnfeld, MSW, RSW
Learning the Language of Special Needs
- By Lisa Simmons
Your child has just been diagnosed with a disabling
condition. Suddenly you are surrounded by professionals. Usually they are:Using words so long they give you a headache
Wanting permission to do a test you aren't familiar with or
Asking you choose between options you don't fully understand
you overwhelmed yet? Receiving a diagnosis is almost always a double-edged sword. Part of you is relieved to finally have
a name for what you are dealing with, but another part of you is grieving. Even if you knew in your heart something wasn't
right --hearing your fears confirmed is almost always traumatic.
Now you have a choice to make -- should you simply
follow their lead and move in whatever direction the nearest expert points you OR should you take the time to learn about
this condition and develop your own opinions. The first choice may be easier in the beginning when you are feeling stressed,
anxious, and exhausted, but in the long run I believe you will be happier with option #2. Give me a couple minutes and I'll
try to tell you why.
First of all, this has nothing to do with intelligence. You are facing an area you have never
been exposed to and your lack of knowledge is all about time not ability.
Why do you need this information?
- To make you a better partner in your child's care.
When you understand your child's condition you will be a more
effective partner for every doctor, therapist, and case management specialist that you come in contact with. No one knows
your child better than you do or has as much access as you do. If anyone is in a position to see subtle changes or identify
potential problems -- it's you. But only if you know what to look for and what questions to ask. That "know how" comes from
educating yourself. Can't you just learn from the doctors and therapists? No. You will learn a lot from good professionals,
but few will have the time to fully educate you about your child's condition. And even if they were willing to sit with you
for hours, you couldn't absorb it all at once. You need to learn at a pace that is comfortable for you and to have the control
to focus on areas that are high on your concern list. Even if it takes time and effort you don't feel you have to give. It's
#2 - To protect your child.
99.9% of all healthcare and social service professionals are wonderful,
caring individuals who want to do everything they can to support you and help your child. Having said that, you need to be
aware that occasionally you may cross the path of someone who is too overworked, too stressed, or too worried about budget
concerns to put your child's need ahead of everything else. If someone like this doesn't tell you all the options available,
will it hurt your child's progress toward independence? It's hard to say for sure. The impact might only be minor. Or it could
be extremely significant. What if that person decides that assistive technology is too expensive and your child never learns
to communicate independently. If you know the available options you are prepared to say, "I think there are some other options
we need to discuss".
#3 - To make it easier to live with yourself.
Many parents have "closet fears". That somehow,
something they did (or didn't do) caused their child's condition. It can eat away at your sense of security as a parent and
if you feel your spouse did (or didn't do) something critical then it can eat away at the foundation of your marriage. Factual
information is the only way to end this internal debate and put it behind you. Raising a child with special needs is extremely
hard on marriages and the last thing you need is an additional (unfounded) stressor to complicate the situation.
- To connect you to a larger community
Learning the language of special needs doesn't have to be an added burden. In
fact, it can turn out to be a way of finding a community of personal support that will help you through many difficult days
and situations. As you research your child's condition you are likely to encounter other parents, support groups, discussion
lists, websites, and information centers that are created specifically to help parents raising children with special needs.
By drawing on these sources of information and support you can become the kind of parent you always wanted to be -- knowledgeable,
secure, and prepared to love and care for your special child.
TIP: If you're ready to start learning, don't go it alone.
Look for a community of support like Ideal Lives where you can find resources related to your child's diagnosis; recommended
"parent guide books" written in plain English; acronym glossarys to figure out all the jargon; and a wonderful community of
supportive parents who've been where you are.
© 2004 Lisa Simmons.