My child has special needs: Reaching her/his full potential

Commented by 0 Member   View Comments

By: Annette Karmiloff-Smith

Learn About The Pampers Parenting Institute

Article Summary

 Introduction

 A very brief word about genetics

 Children with special needs

 More information about developmental syndromes

Introduction

Every child is special, and our main goal as parents is to bring up happy children who will go on to lead fulfilling lives. If you want to ensure that your child will reach his or her full potential, concentrate on building self-confidence and encouraging a real passion for learning. Because we are all unique, with different characters, abilities, likes and dislikes, we also all have unique individual potential. We know that our children cannot all achieve the same things, but our aim should be to help them reach their full potential and do their best in life.

For some babies, being ‘special’ has a double meaning: they are not only very special to their parents, but they also have special needs, so the route to achieving their full potential will involve extra hurdles. Children with special needs often require extra help in many aspects of their life: some require assistance in learning to feed, talk, sit and walk, whereas others, although developing slowly, will not require extra assistance until they reach school age. Children born with brain damage or genetic mutations face challenges that mean that they may not always reach the same developmental milestones or levels of achievement as their peers. In these cases, it is even more important for parents to focus on the individuality of their child and their unique potential. With the help of sensitive parenting, insightful schooling, and a generally positive attitude that encourages confidence and a love of learning, a baby with special needs is as likely to reach her or his own maximum potential as is any other child.

It is perfectly natural for parents to feel fear or even disappointment when they first discover that their baby has special needs. Mums and dads often go through a period of “mourning” as they come to terms with the unexpected challenges ahead. This is a time when support from family, friends and professionals is invaluable. It is also a time for parents and grandparents to learn. Finding out as much as you can about your child’s condition – through books, internet articles, by talking to doctors and joining parent support groups – will help you overcome the first hurdle. Enjoy discovering where your own child’s potential lies, so that you can plan how best to help her or him reach it. After all, the complex ways in which genes interact with the environment mean that experience plays an important role in development. So, although genetic conditions cannot be cured, your role as parent and career will go a long way to facilitating your baby’s full developmental potential.

The aim of this article is to briefly look at issues surrounding all babies with special needs, rather than focusing on particular syndromes. Obviously, Pampers are not experts in the field of children with special needs, but that does not mean that we do not care about such children. We keep both typically developing and atypically developing children in mind when creating our products. Moreover, we are fully aware of how important it is to understand different learning trajectories and how these can affect family life. We also realize that parents are often as knowledgeable as the so-called experts about their own child’s condition. But knowledge also of other syndromes can help discover what is common or different across conditions. As a result, intervention programmes can be tailored to the specific needs of each child. It is also vital, in our view, for the wider community to gain a better understanding of the developmental syndromes present in our societies. This article has thus been written with all parents and grandparents in mind, those with typically developing babies as well as those with atypically developing babies. This is because gaining a deeper understanding of atypical development is useful to us all. And this is especially true, if better tolerance and awareness is to be fostered in future generations.

A very brief word about genetics

Many developmental conditions are caused by genetic mutations, although some are due to lack of oxygen or brain lesion during birth. We each have about 30,000 genes, lined up in different quantities along our chromosomes. We carry two copies of each of our 23 chromosomes (46 in all), one copy from mother and one from father. Chromosome 23 is special because it is sex-linked, with girls having two X chromosomes (one from each parent) and boys having one X from mother and one Y chromosome from father. Most genes have multiple functions, being expressed in both body and brain. It’s interesting to realize that each reader of this article will have about 100 mutations in their personal genetic code, but usually the mutation of a gene has no obvious effect on our outcome. Some genes, however, have a bigger impact when they are mutated (deleted, duplicated, moved to the wrong place, at the wrong time, etc.). Sometimes a piece of one of the two copies of a chromosome is missing, whereas in other cases a third copy of a chromosome is made instead of two. Such changes at the level of specific genes or whole chromosomes can affect the course of development. Timing is also vital for development. Some mutations cause genes to be switched off too soon, while others leave genes producing their protein products continuously instead of being switched off at the appropriate developmental time. These changes on different chromosomes can disrupt the typical course of subsequent motor, cognitive, linguistic and social development. For some syndromes, scientists know which gene or genes are involved. For others, however, it is well established that there is a genetic contribution through findings from twin studies, but researchers are yet to discover precisely which gene or genes are actually involved.

Many syndromes occur equally in boys and girls, but some are predominantly found in boys whereas others occur only or predominantly in girls. Usually syndromes are to be found across all regions or ethnic groups, but a few are more vulnerable in particular ethnic groups and geographic regions. Some syndromes are more frequent (as often as 1 in 600 births), whereas others are very rare (as few as 1 in 50,000 births). Sometimes maternal age can play a role, but most syndromes can arise in babies of parents of any age, since they are chance occurrences. Indeed, although some genetic mutations are inherited, many are due to pure chance. The way that maternal and paternal genes combine when the egg and sperm join at conception is like a massive lottery of chance and probability, in which occasional mutations simply occur.

Children with special needs

So what are the common symptoms of babies with special needs? First and foremost, we must remember that individual differences can be very marked even within the same syndrome, so it is always better to concentrate on your child’s individual progress than comparing her or him to other babies. Doctors will often recognize a genetic syndrome by its characteristic facial appearance, whereas for other syndromes facial differences only become obvious somewhat later in childhood. Many syndromes give rise to very floppy newborns, with loose joints and weak muscle tone or with a heart condition, alerting the midwife or doctor that a genetic test is called for. In general, such babies are also lower than average weight and length. Early on, many have problems with sucking and swallowing, so they tend to put on weight more slowly than typically developing babies.

Most but not all syndromes result in some form of learning difficulties. Mental retardation can vary from mild to moderate to severe and is often less a function of the syndrome than of the individual child. This usually means that milestones such as reaching, sitting, crawling, walking and talking are achieved later than in typical development. But each syndrome has a specific cluster of abilities and deficits, and it’s always important to focus on the strengths and not just the weaknesses. When children reach childhood, spatial or visual skills in some syndromes may be considerably stronger than language, whereas in others, language shows greater proficiency. In some conditions, language may seem inappropriately pedantic as if the child were older than his/her age. However, some syndromic children may develop almost no language at all, but that doesn’t necessarily mean that they cannot communicate: there are many forms of non-verbal communication that can be developed with children with developmental learning difficulties.

Many children with genetic disorders have a very friendly disposition, even in early infancy, but with age this can become somewhat of a problem when they meet strangers. Later on, too, some often have trouble interacting with peers, but are fine with younger children or adults. Other syndromes result in children coming across as more aloof in the social world. Indeed, for these children, working out what another person is thinking or why another person is acting in a particular way is particularly problematic. It is good to bear all these possibilities in mind when your child finds her- or himself in social situations.

It is always important to remember that things that other children do automatically may require extra efforts on your part, but focus on the fact that your child can gain an immense sense of pride, even with the smallest of achievements. Don’t forget that all individuals with special needs can in the long run play an important role in the community and will strive, however difficult that is, to accomplish goals just like everyone else. Parent support groups can play an incredibly important role in helping to prepare for the future, and the more positive and optimistic an attitude you have, the more you can help your offspring face the challenges that will arise throughout her or his life.

Finally, always remember that there are individual differences in the development and abilities of all children. In the case of atypical development, such individual differences can be even more marked. So comparing your child to others with special needs is not helpful. Focus instead on your child’s own developmental progress, however small. Enjoy noting changes and finding ways to enhance them. Always do your utmost to focus on the positive aspects of your child’s development. Realise, too, what an important role sleep plays. Research has shown that children (and adults, and even birds!) learn better after an interim period of deep sleep than without sleep. So, because sleep disturbances are common in children with special needs, this is an area of great importance to discuss with your health visitor. There is also a Pampers booklet devoted entirely to sleep in which you may find some useful tips for setting up good sleep routines.

Because there are so many different syndromes, we decided to keep our article general. However, we list below websites for some of the most common syndromes. If we have not listed the website of the particular condition which your child suffers, please forgive us. But do please write to us, so that we can refer our readers to the websites of other conditions. You can reach us via the website, by clicking on ‘contact us’. We consider feedback from our readers who, as we said above, often know as much as or more than so-called experts about a particular condition, to be a vital part of the rich interaction that Pampers strives to build with you.

More information about developmental syndromes can be found on the following websites:

Back to top