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 your child.

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.

Practically 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.

On 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 care.

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.

Parents 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 issues.

While they’re at it, it might just do the parent, teacher or caregiver a world of good to join them!

Gary Direnfeld, MSW, RSW
(905) 628-4847
gary@yoursocialworker.com
www.yoursocialworker.com