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درمانهاي رژيمي و داروئي
از آنجائي كه اُتيسم يك طيف از بيماريهاي مشابه است نمي
توان گفت كه يك درمان خاص براي همه اين طيف مي تواند مؤثر
باشد . ولي به هر حال متخصصين و خانواده ها به اين نتيجه
رسيده اند كه با استفاده از چند روش درماني و يا تركيبي از
آنها مي توان به كودكان اُتيستيك كمك كرد تا رفتارهاي
اختلالي آنها بهتر شده و عملكرد كلّي آنها پيشرفت كند .
اين تركيب درماني مي تواند تركيبي از روشهاي روانشناسي و
داروئي باشد . تاكنون داروئي يافت نشده است كه از بروز
اُتيسم جلوگيري كند و يا اينكه آنرا درمان كند ولي متخصصين
و خانواده ها به تجربه دريافته اند كه بعضي از داروهاي
استفاده شده در بيماري هاي ديگر ، در بهبود بعضي از
اختلالات اُتيسم مؤثر مي باشند . همچنين مشاهده شده است كه
تغييرات رژيم غذائي و افزودن برخي ويتامين ها و موادمعدني
مي تواند در بهبود برخي از اختلالات اُتيسم مؤثر باشد .در
طي ده سال گذشته تحقيقات زيادي در اين مورد انجام شده كه
نتايج برخي از آنها حاكي از اين است كه افزودن برخي
ويتامين ها مانند ب6 و ب12 و همچنين حذف برخي مواد مانند
گلوتن و كازئين از رژيم غذائي كودك مي تواند در بهبود
عملكرد سيستم گوارشي ، آلرژي ها و رفتارهاي كودك تأثير
مثبت داشته باشد . البته تمامي تحقيقات و بررسي ها اين
مطلب را به صورت علمي و قطعي ثابت نمي كنند . تعدادي از
داروهاي بيماريهاي ديگر وجود دارند كه در مورد بعضي از
كودكان اُتيستيك اثرات مثبت نشان داده اند.اين داروها
معمولاً در درمان بيش فعّالي ، اختلالات توجه ، و نگراني
در كودكان اُتيستيك مؤثر بوده اند . در اصل مي توان گفت
هدف از استفاده دارو در كودكان اُتيستيك ، كاهش رفتارهاي
اختلالي در جهت استفاده بهتر و بيشتر كودك از جلسات درماني
مي باشد . سعي كنيد در صورتي كه متخصصين براي كودك شما
دارو تجويز مي كنند اين سئوالات را از آنها بپرسيد : آيا
اين دارو اثرات جانبي در كودك خواهند داشت ؟ چه مقدار در
طي روز بايد استفاده شود ؟ به چه نحو بايد استعمال شود ؟
در دراز مدت چه تأثيراتي خواهد داشت ؟ چه كسي و چگونه
تأثيرات اين دارو را در كودك بررسي خواهد كرد ؟آيا
آزمايشات بخصوصي را قبل از استفاده اين دارو بايد انجام
داد ؟ آيا استفاده اين دارو هم زمان با ساير داروها و
ويتامين ها مشكلي نخواهد داشت ؟. به هر حال به خاطر داشته
باشيد كه استفاده از هر داروئي براي كودكان اُتيستيك بايد
حتماً زير نظر متخصص انجام شده و اثرات آن به دقت تحت
بررسي باشد
شايد بتوان گفت يكي از بيشترين ويتامين هاي استفاده شده
براي كودكان اُتيستيك ، ويتامين ب مي باشد .اين ويتامين در
ساختن آنزيمهائي كه مغز براي فعّاليت خود به آنها احتياج
دارد مؤثر است .در 18 تحقيقي كه در مورد اين ويتامين انجام
شده است نشان داده شده است كه حدود نيمي از كودكاني كه اين
ويتامين در رژيم غذائي آنها بيشتر شده بود ، تأثيرات مثبتي
در آنها به وجود آمده بود كه اين تأثيرات شامل بهبود رفتار
، بهبود تماس چشمي ، توجه بيشتر ، و افزايش توانائي
يادگيري در اين كودكان بود. در بعضي از كودكان ، روغن جگر
ماهي كه حاوي مقادير فراواني ويتامبن هاي آ و د مي باشد
تأثيرات خوبي در افزايش تماس چشمي و بهبود رفتاري داشته
است . ويتامين س نيز در عملكرد بهتر مغز تأثير دارد و
استفاده آن در برخي از كودكان اثرات مثبت داشته است . در
صورتي كه قصد استفاده از ويتامين ها را براي كودك خود
داشتيد مي بايست حتماً با دكتر متخصص كودك خود مشورت
نمائيد و در صورت لزوم آزمايشاتي را انجام دهيد تا مطمئن
شويد استفاده بيش از حد معمول اين ويتامين ها اثرات جانبي
و مخرب بر روي كودك شما نخواهد داشت . برخي از كودكان
اُتيستيك در مورد بعضي از موادغذائي حساسيت هائي از خود
نشان مي دهند و حتي ممكن است در مورد آن آلرژي نيز پيدا
كنند . ممكن است اين حساسيت ها و آلرژي به صورت رفتارهاي
اختلالي در كودك بروز كنند .گزارشهاي فراواني از والدين و
متخصصين وجود دارند كه حاكي از آن است كه حذف اين مواد
غذائي از رژيم غذائي كودك باعث پيشرفت چشمگير و بهبود
رفتاري شده است . در برخي از كودكان اُتيستيك مشاهده شده
است كه پروتئين هائي نظير گلوتن و كازئين به خوبي شكسته
نمي شوند و باعث بروز مشكلاتي در كودك مي شوند .حذف اين
پروتئينها در اين كودكان مي تواند به رفع اختلالت گوارشي
در آنها كمك كند و در نتيجه رفتارهاي اختلالي ناشي از آن
نيز رفع مي گردند . گلوتن در غلات و كازئين در لبنيات وجود
دارند . بايد توجه داشت كه در صورت وجود اين مشكل در كودك
شما ، نبايد غلات و لبنيات به يكباره از رژيم غذائي كودك
حذف شوند زيرا ممكن است اين قطع ناگهاني خود باعث بروز
مشكلات ديگري شود . براي اين منظور بهتر است با يك متخصص
تغذيه مشورت شود تا نحوه حذف اين مواد و تغيير مناسب رژيم
غذائي به شما آموزش داده شود
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روش
اِي بي اِي
Applied Behavior AnalysisA.B.A.
بسياري از روشهاي درماني كودكان اُتيستيك بر پايه اصول اين روش
تهيه شده اند. اصل مهم اين روش اين است كه رفتارهائي كه مورد
تشويق قرار بگيرند احتمال تكرار و افزايش خواهند داشت و
رفتارهائي كه مورد توجه قرار نگيرند احتمال حذف شدن آنها وجود
دارد .اگر چه اِي بي اِي يك تئوري مي باشد ولي بسياري از مردم
از اين اصطلاح براي روشهائي كه با اين اصل كار مي كنند استفاده
مي كنند . دو روش مهمي كه بر پايه اين اصل وجود دارند روش
آموزش جزء به جزء و لوواس مي باشند .
در روش آموزش جزء به جزء و روش لوواس هر تمريني كه به كودك
داده مي شود شامل يك دستور به كودك ، يك عمل از طرف كودك و يك
عكس العمل از طرف درمانگر مي باشد .اين روش علاوه بر تصحيح
رفتارهاي كودك شامل آموزش مهارتهاي جديد نيز از قبيل مهارتهاي
اوليه مانند خوابيدن و لباس پوشيدن تا مهارتهاي پيشرفته مانند
برخوردهاي صحيح اجتماعي مي باشد . اين روش ، روشي بسيار دقيق و
كامل است .در اين روش معمولاً كودك بين 30 تا 40 ساعت در هفته
به صورت انفرادي با درمانگر دوره ديده كار مي كند . هر كار و
مهارت جديد به اجزاء كوچكتري تقسيم مي شود . هرگاه كار خواسته
شده ازكودك به درستي انجام شود ، كودك مورد تشويق قرار مي گيرد
تا در كودك انگيزه تكرار آن و فرمانبري بيشتر شود . اين روش با
مخالفت هائي نيز روبرو شده است . برخي از متخصصين معتقدند كه
اين روش به احساسات كودك لطمه مي زند و مدت زمان آموزش آن در
طول هفته تأثيرات ناخوشايندي بر خانواده ميگذارد. به هر حال
آمار و ارقام و تجربه نشان داده است كه تكنيكهاي اِي بي اِي
نتايج مثبت و با ثباتي بر روي كودكان اُتيستيك داشته است
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درمان و توانبخشی فلج مغزی - سکته مغزی و
اختلالات بلع-گفتار
و اختلالات یادگیری در منزل توسط متخصص
کرج و
حومه
09358185737
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درمان و توانبخشی فلج مغزی - سکته مغزی و
اختلالات بلع در منزل توسط متخصص
09355193279
کرج و حومه با استفاده از دستگاه و بیو فید بک
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کلینیک توانبخشی
ولیعصر
برای اولین بار در کرج بزرگ استفاده از
بیو فید بک
در درمان انواع اختلالات جسمی -
ذهنی -حرکتی
د رمان انواع اختلالات گفتاری بزرگسالان و کودکان
سکته مغزی - فلج مغزی -
لکنت - ناشنوایی -
کم شنوایی
 اتیسم و اختلالات رفتاری
کم توانی ذهنی و درمان اختلالات یادگیری
تعیین بهره هوشی و آماده
سازی برای تست
با تعیین وقت قبلی
4428056-0261
همراه 09121623463
کرج - رجایی
شهر
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PECS سیستم برقراری ارتباط از طریق
تبادل تصویر
در سال 1985به عنوان یک دوره آموزش متناوب که به کودکان وبزرگسالان اتیستیک
وگروهی دیگر که مشکل ارتباطی دارند اجازه داد تا شروع کننده
ارتباط باشند،ایجاد شد
این روش بر ارتباط و آموزش معنادارتاکید دارد،چون معتقدند که
یک چیز معنادار در فرد انگیزه وجود می آورد
یکی از سردمداران این نظریه باندی میباشد که شیوه هرم آموزش را
مطرح کرد
این هرم درپایه شامل
مشوق های قوی
ارتباط معنادار اجتماعی
مشوق های قوی
جلوگیری از رفتارهای نابهنجار
ابعادهرم شامل
تعمیم
استراتژی های آموزشی
طراحی آموزش موثر
کاهش و اصلاح اشتباها ت
اساس آموزش در ابعاد این هرم می باشد. هدف از آموزش در
این روش استقلال و زندگی مستقل می باشد. دارای ۶فاز می
باشد
فاز١: کودک یاد می گیرد ارتباط درست را از طریق تبادل تصویری
که دارای بالاترین ارزش تشویقی برا یش می باشد،بر قرار کند.
هدف اصلی دراین فاز آموزش تقاضا می باشد
فاز۲: کودک یاد می گیرد در ارتباط اصرار کند.تا اینکه به
جستجوی فعالانه تصاویر رفته و سپس به سمت شخصی(مربی) برای
برآورده شدن خاصه خود حرکت کند.هد ف ازاین فاز آموزش اصرار به
کودک می باشد
فاز۳: کودک یاد می گیردکه به منظور انتخاب تصویری که نشاندهنده
تمایل بیشترش به آن می باشد،بین تصاویر تمایز غائل شود.هدف از
این فاز آموزش تشخیص وتمیز می باشد
فاز۴: کودک یاد می گیرد از ساختار جمله برای بیان در خواست خود
به صورت( من... می خواهم) استفاده کند
فاز۵: کودک یاد می گیرد به سئوال( چه چیزی را می خواهی؟) پاسخ
دهد
فاز۶: کودک یاد می گیرد در مورد چیزهایی که در اطرافش می باشد
به صورت خود مختار اظهار نظر کرده و به سئوالات پاسخ دهد
با ید توجه داشت که دراوایل این روش( فازهای اولیه) علاوه بر
مربی وکودک، کمک مربی نیز حضور دارد.و خانواده نیز در تمام این
مراحل باید همکاریهای لازم را داشته باشد
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برنامه ی آموزشی سان-رایز
در روش سان-رایز،«والدین» درمانگران اصلی و شکل دهنده به
برنامه ی آموزشی هستند. در این برنامه به والدین آموخته می شود
که به کودک خود عشق بورزند،به او احترام بگذارند و او را
«آنچنان که هست» بپذیرند، تا از طریق این پذیرش کودک خود را به
برقراری رابطه ای دو جانبه در محیط آرامش بخش خانه تشویق کنند
تعلیم و آموزش این برنامه در «مرکز درمانی اتیزم امریکا» در
شفیلد و ماساچوست همانند دیگر مراکز آموزشی خارج از امریکا
صورت می گیرد
این برنامه مشتمل بر سه بخش است
1- شروع برنامه ی آموزشی سان-رایز : شامل یک دوره ی آموزشی به
مدت یک هفته برای والدین و درمانگران. آنان در این دوره ی
کوتاه مراحل اساسی و روش های لازم برای انجام برنامه ی آموزشی
سان-رایز را فرا می گیرند.گذراندن این دوره پیش نیاز مراحل
بعدی است
2- اجرای برنامه ی آموزشی سان-رایز به طور پیشرفته :این مرحله
نیز در طول یک هفته انجام می شود و به معرفی روش های خاص و
چالش های تجربه شده در برنامه های آموزشی خانگی مختلف می
پردازد
همچنین در طول این مرحله،مربیان به تقویت روحیه و توان والدین
می پردازند و آنان را در برنامه ریزی ویافتن اهداف مشخص برای
کودکشان یاری می دهند
3- اجرای متمرکز و قسمت اصلی برنامه ی آموزشی سان-رایز: این
مرحله مهمترین قسمت برنامه است که در طول یک هفته انجام گرفته
و علاوه بر والدین شامل فرزندانشان نیز می شود.مربیان برنامه
آموزشی، هشت ساعت در روز به آموزش کودک می پردازند و همچنین با
استفاده از یافته های خود در هنگام آموزش کودک ،به راهنمایی
والدین او برای دستیابی به اهداف تعیین شده برای کودک مشغول می
شوند
علاوه بر آنچه ذکر شد،موسسه ی سان – رایز به انجام مشاوره ی
تلفنی و آموزش از طریق نوار ویدئویی نیز می پردازد تا بدین
وسیله برای والدین و مربیان،حداکثر بازده در کار با کودکان
اتیستیک را فراهم کند
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قسمتی از آنچه که می
توانید در این پایگاه اطلاع رسانی مشاهده کنید :
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YOUR BABY HAS DOWN’S SYNDROME
In the following text ‘he’ and ‘she’
are used interchangeably, but all information applies to babies of
both sexes.
During pregnancy most parents have hopes and dreams for their future
child. When the baby is born with Down’s syndrome their dreams are
shattered - they are shocked and confused. The period immediately
after a baby’s birth is a difficult time to be given such news.
Parents are not at their strongest, physically or emotionally, and
many experience feelings which disturb them. This booklet is based
on the writings of parents who have had the same shock, have had a
baby with Down’s syndrome, and have felt many of the emotions that
you are going through now.
Sorrow
When you are told that your child has
Down’s syndrome, it would be exceptional not to feel sad. If you can
express this feeling by ‘letting go’ of your tears, you will find it
easier to cope afterwards. There is no shame in weeping - it is a
natural reaction, and crying together can help both parents bear the
sadness.
Most parents need to go through a period of mourning for the
imagined or hoped-for child they expected.
Anger
Most parents ask ‘why should it happen
to us?’ There is no answer to this question, but it is all right to
feel anger and no one will blame you. If you can talk it through
with a caring friend it may well be helpful.
Shock
It is quite natural after a while to feel ‘numb’. This is your
mind’s way of protecting you from more pain than you can handle. As
shock fades you may experience other reactions, which might include
feeling as if you are in a bad dream
becoming forgetful and finding it difficult to concentrate
denial
Guilt
Not all parents feel guilty, but many
do. This is also a natural reaction, although the fact that your
child has Down’s syndrome is certainly not your fault.
These feelings are perfectly normal and. According to most parents’
experience, they may never be completely eradicated but will become
less prominent as time passes.
Support
It helps many parents to be able to
talk over their feelings with others who have been through the same
experience. The Down's Syndrome Association has branches and groups
in most areas of the country. Getting in touch with them, when you
feel ready to do so, could help you to sort out feelings about what
it means to have a baby with Down’s syndrome.
Most parents have questions about Down’s syndrome and what having a
baby with the condition will mean to them and their family. In this
booklet we shall try to answer questions that parents most often
ask. The Down's Syndrome Association has literature and information
on almost every aspect of the condition, so if you would like more
information, just contact us.
What is Down’s syndrome?
Down’s syndrome is a genetic condition
(i.e. something you are born with, which is present in the baby from
the moment of conception) caused by the presence of an extra
chromosome. Chromosomes are tiny particles, which are present in
every cell in every tissue in our bodies. They carry the ‘blueprint’
for all the characteristics we inherit. This blueprint is carried in
the form of a coded message in a chemical substance called DNA.
There are 23 pairs of chromosomes in each cell, hence 46 altogether.
One of each pair comes from the father, one from the mother.
In 1959, a French geneticist, Professor Jerome Lejeune, discovered
that Down’s syndrome was caused by the presence of an extra copy of
chromosome 21, making 47 chromosomes in all.
A ‘syndrome’ is a collection of signs or characteristics. The name
‘Down’ comes from the English doctor, John Langdon Down, who first
described the syndrome in 1866, nearly 100 years before the extra
chromosome was discovered. Everyday in the UK, between one and two
babies are born with Down’s syndrome, which means that one baby in
1000 has the condition.
People with Down’s syndrome all have a certain degree of learning
disability (mental handicap). The degree of disability varies from
person to person and it is impossible to tell at birth what that
degree will be.
What causes Down’s syndrome?
As yet, we do not know what causes the
presence of extra number 21 chromosome. It can come from either the
mother or the father. The most common type of Down’s syndrome,
Standard Trisomy 21 (also known as Primary Trisomy 21 or Regular
Trisomy 21), occurs because of an unusual cell division which has
produced either an egg or a sperm with 24 chromosomes instead of 23.
When this egg or sperm fuses with an ordinary egg or sperm, the
first cell of the developing baby has 47 chromosomes instead of 46,
and all that baby’s cells will have 47 chromosomes. There is no way
of predicting whether a person is more or less likely to make eggs
or sperm with 24 chromosomes. We know that babies born to older
mothers have a higher chance of having Down’s syndrome, but we do
not know why.
Could we have prevented our baby having Down’s syndrome?
It is important to remember that you are not to blame for your baby
having Down’s syndrome. Nothing you did before or during pregnancy
has caused it. It occurs in all races, in all social classes and in
all countries throughout the world. It can happen to anyone.
Does it mean that any further children we might have will also have
Down’s syndrome?
Standard Trisomy 21 is not hereditary. However, once you have had
one baby with Down’s syndrome your chances of having another child
with the condition are increased. Overall this chance is between 1
in 100 and 1 in 200, which is considerably less than the chance of,
say, having twins ‘out of the blue’. When thinking about your next
pregnancy it would be helpful to talk to a genetic counsellor who
could talk things through with you in some detail.
What does the extra chromosome mean for our baby?
All people with Down’s syndrome share some certain physical
characteristics, though not every child with the condition has every
characteristic. Your baby will have inherited physical
characteristics from both of you, just like any other of your
children, as well as sharing some of the common signs of Down’s
syndrome. Your baby is unique. Some parents wonder if there is a
link between the number of these physical characteristics and the
future development of their new baby. In fact, there is no way at
this early stage of predicting the level of ability of your child.
The extra chromosome means that your baby will be slower to reach
her milestones and will have a certain degree of learning
difficulty, but most children with Down’s syndrome do learn to walk
and talk, ride a bike and read and write, in fact to do most of the
things other children do. It’s just that their development is
usually delayed.
What are the common signs of Down’s
syndrome?
Your baby may have looser muscles and joints than other babies.
This will improve as she gets older.
She may have lower than average birth weight and put on weight at
a slower pace than other babies. (Special weight charts are
available for babies and children with Down’s syndrome from the
National Office of the Association).
Babies with Down’s syndrome often have eyes that slant upward and
outward. Their eyelids often have an extra fold of skin (epicanthic
fold) which appears to exaggerate the slant. This does not mean that
there is anything wrong with the eyes. They just look different.
The back of your babies’ head may be flatter than average.
Many babies with Down’s syndrome have a single crease which runs
right across the palm of the hand. Doctors often look for this
characteristic crease, as a sign that a baby may have Down’s
syndrome. However, some babies who do not have Down’s syndrome also
have a crease like this.
All babies are different from each other and the same is true of
babies with Down’s syndrome. This means that in some babies the
characteristic signs of Down’s syndrome are fairly easy to recognise
soon after birth, whilst others may look and behave little
differently from other babies. However, experienced doctors and
midwives are usually very good at picking up subtle differences,
which suggest that a blood test should be done to check the
chromosomes.
Will our baby have health problems?
Chest and sinus problems
Babies and young children with Down’s syndrome tend to be prone to
chest and sinus infections but, thanks to better medical knowledge
and care, such infections are no longer as serious as they used to
be.
Feeding problems
Some babies with Down’s syndrome seem to lack the strength and
determination to feed in the early days. Some may be slow to sort
out the complicated co-ordination necessary to suck, swallow and
breathe at the same time and they splutter and choke a bit. These
problems often settle down during the first two weeks. If you want
to breast-feed, but find that your baby can’t cope in the early days
it may well be that if you keep your milk going he will soon sort
himself out and take to breast-feeding.
You may have chosen to bottle-feed your baby for whatever reason and
many babies with Down’s syndrome find it easier to feed from the
bottle. It will not harm your baby to have formula milk. The
important thing is that you and your baby should be as contented as
possible!
When you begin to feed your baby it is worth trying to hold her
fairly upright to feed and check first that the tongue is not
sticking to the roof of the mouth. For a baby to suckle and get
adequate milk the nipple or teat must be ON the tongue (not under
it). Specially adapted teats are available to help babies who have
difficulty feeding.
Do not hurry the feed. Babies with Down’s syndrome often feed very
slowly, so do not stop too quickly. Your baby may fall asleep at
intervals. If this happens in the middle of a feed, try tickling his
cheeks, chin and feet.
Temperature control
The body’s heat-regulating mechanism does not always work well in
early life. It is therefore important that the baby’s bedroom is not
cold (18°C is ideal), and there are no draughts. Overheating can be
hazardous for all babies, however, and it is important that they do
not get too hot through over-wrapping when indoors. Humidifying the
air will help your baby to breathe more freely, too.
Skincare
Your baby’s skin may be very dry. Massage him with a little baby oil
and put some in the bath water. A little moisturising cream, for
example E45 cream, unperfumed cold ream or olive oil rubbed gently
on the skin every day should prevent drying and crying. Keep an eye
out for allergic reactions. Your doctor or pharmacist can help with
alternatives. You may be able to obtain some creams on prescription.
Tongue control
You may need give your baby particular
attention to help control her tongue. Playing games, pulling faces
and making noises etc will assist your child to exercise face and
tongue muscles and also help with early sounds and speech. Try to
avoid a blocked nose, which would encourage open-mouth breathing and
protruding tongue. Humidifying the air in the baby’s room will help
to prevent a dry blocked nose. Making a game of pushing in the
tongue over and over again will help!
Heart problems
About one in three children born with Down’s syndrome has a heart
defect. Some heart defects are quite minor, such as heart murmurs;
some defects are severe, requiring medication and/or surgery.
Your baby’s heart will be one of the things that a paediatrician
will check at her first neonatal examination, and, if there is any
doubt about a heart defect being present, then further tests will be
made to make sure everything is as it should be. However, heart
defects are not always picked up by these tests when a baby is very
small so your paediatrician will continue to make regular checks in
the first year or so for any signs of a defect. If you are ever
worried about anything - ask your doctor! (For a detailed
explanation of the more common heart defects that can affect babies
with Down’s syndrome, please see Appendix I).
If you are told that your baby has a heart defect, and you would
like to talk to someone whose child has a similar problem or has
heart surgery, the Down's Syndrome Association can put you in touch
with parents who will understand what you are going through.
How will having a baby with Down’s
syndrome affect the rest of the family?
Having a baby with Down’s syndrome in
the family will require a period of readjustment. You may feel under
more pressure to do things with your baby to help her development
than you would have felt with any other baby. Take time to get to
know the baby as part of the family. Your baby with Down’s syndrome
will have his own personality and characteristics just like your
other children.
How will we explain to relatives?
Telling brothers and sisters
Children take their cue from their parents - if you can feel
positive about the new baby, they will too. It is important to
explain to them as soon as possible that the new baby may learn more
slowly than themselves to do things and may need extra care, but
that with time he will learn to do everything other babies do.
There is little reason to think that the new baby will have a bad
effect on the other children’s lives. Research shows that most
children get on well with their sibling with Down’s syndrome, are
fond of him, still enjoy their own pursuits and are not embarrassed
by their friends meeting him.
Many parents have felt that their other children become more
compassionate, with more feeling for people with all kinds of
disabilities, as a result of having a sibling with Down’s syndrome.
Try to integrate your baby into the family routine as quickly as
possible. It is important not to restrict the rest of the family’s
activities more than necessary because the baby has Down’s syndrome.
Take him out and about with the family - this will help them all to
come to terms with the condition and will give the baby plenty of
new experiences.
Telling the grandparents
Grandparents will undoubtedly go through the same feelings as
yourselves, but without being able to fill their time with the
practical tasks of looking after the baby. Where possible, try to
include them in doing things with and for your baby and allow them
to get to know her. Grandparents and relatives or friends are always
welcome to speak to someone at the Down’s Syndrome Association or to
attend meetings of local branches or groups.
Telling friends and acquaintances
This, too, is best done as soon as possible after the birth.
Sometimes friends (and relatives) unwittingly say thoughtless and
hurtful things out of embarrassment and even ignorance. They have
pictured you with your ‘normal’ new baby and may have difficulty
knowing how to react now that the baby is born has Down’s syndrome.
If you can be positive about your baby, friends will take their cue
from you.
Will having a baby with Down’s syndrome
in the family disrupt our marriage?
Research shows that there are no more
marital difficulties experienced by parents of children with Down’s
syndrome than by the rest of the population. In fact, when asked
about the effect of having a child with Down’s syndrome in the
family, parents often say it has brought them closer together.
What does the future hold for our
child?
During the first few weeks, many
parents ask
What will be available for my child
when she is older?
What kind of financial provision can we make for our child’s
future?
Children with Down’s syndrome can grow
up to live long and fulfilled lives. Provided they are allowed the
opportunities they need to develop self-help skills and
independence. People with Down’s syndrome can thrive well in to
their fifties, facing many of the challenges we all encounter:
school, further education, work and a home of one’s own. Many
children with Down’s syndrome are now being integrated successfully
into mainstream schools.
Available provision differs from area to area and the situation is
always changing. Residential and occupational opportunities for
young people and adults are being developed all the time by both the
statutory and voluntary agencies. Up-to-date- information can be
obtained from the Information Officers at the National Office of the
Association.
Financial provision can be made by way of a trust or settlement
established during your lifetime or by a combination of a will and a
trust. In either case, it can be combined with a planned programme
of saving or by the provision of a suitable insurance policy. The
Association has information on these topics and can put you in touch
with professional people who can help.
Where can we get help if we need it?
Questions about health care should be
addressed to your midwife, family doctor, or to your Health Visitor
who is generally based at the local Child Health Clinic. Your child
may also be under the care of a paediatrician or some other
hospital-based specialist who will also give advice. All can be
useful sources of information about other services.
Social worker
A useful starting point for help is the Local Authority or Hospital
Social Worker. Ina many areas a Social Worker will call
automatically after the birth of a child with special needs.
Sometimes you may have to ask for a visit. You will find the number
in your telephone directory under Local Authority Social Services
Department.
Child Development Centres and Community Teams for Learning
Disabilities
Child Development Centres and Community Teams for Learning
Disabilities exist in many areas. They consist of professionals:
psychologists, speech and language therapists, doctors etc., who can
provide valuable information and assistance.
Benefits Agency (Department of Social Security)
This is the government department, which is in charge of the payment
of benefits to people with learning difficulties (mental handicap)
and their families and carers. One of the useful booklets the
Benefits Agency produces is updated from time to time to take
account of the changes in the benefits and is called ‘Caring for
Someone?’ Telephone your local Benefits Agency office for a copy.
The DSA also has information on benefits.
Parents talking
How some parents coped:
‘When telling relatives and friends
that our much-wanted first child had Down’s syndrome we knew that
they would find the news sad and we broke it to them gently. Our son
has been accepted and visited by all’
‘By the time the diagnosis was made, Steven was already part of the
family and we could not consider anything other than keeping him
with us.’
‘When our little girl was born with Down’s syndrome, it was a
terrible shock and we were very sad. Our parents and friends were
very supportive, which helped enormously. One of the most helpful
things was being introduced, through the local Down's Syndrome
Association group, to a family with a nine month-old daughter the
Down’s syndrome. Meeting them showed us that we would be able to
cope because they had.’
Brothers and sisters speaking
‘When my little sister was born, Mummy and Daddy told me she would
be a bit different and would need help to learn things, more help
than I did. She can do lots of things and I take her out to play. I
think she is lovely.’ Angela aged 12.
‘My little brother can be a real nuisance. He gets everywhere and
wants to play with all my books and toys but my older sister says I
used to do that too when I was his age so I suppose I just have to
be patient with him.’ Simon aged 9.
Grandparents have the last word
‘One of my friends reminded me recently that when I told her that my
daughter’s first child had been born with Down’s syndrome, I said
that my life would never be the same again. After 11 years I can say
that what I said has been true, not in quite the negative sense I
had anticipated, but in the richness of the experience we have had
in watching our grand-daughter grow and develop.’ Lucy’s Grandma
‘I still feel moments of sadness when I think how much Timmy needs
compared to my other grandchildren, but bit by bit, I can see some
of the tricks in him that the other children have got up to and I
know I am really glad to have him as part of our family.’ Timmy’s
Grandpa
Appendix 1
Congenital heart defects
The normal heart is divided in to four chambers. Blueish blood, low
in oxygen, reaches the heart through veins (A) and enters the right
collecting chamber - the right atrium (B). Blood them flows into the
right pumping chamber - the right ventricle (C) - through the
tricuspid valve.
The right ventricle pumps the blood through the pulmonary artery (D)
to the lungs where the blood receives oxygen. After the blood is
oxygenated, it is bright red. This blood returns to the heart
through the left collecting chamber - the left ventricle (F). From
there it is pumped into a large blood vessel called the aorta (G)
which feeds it into smaller blood vessels which carry it around the
body to supply essential oxygen to the tissues. When the oxygen has
been removed the blood becomes blue again and returns to the right
side of the heart.
Usually it is a heart murmur that first alerts a doctor to the
possibility of congenital heart defect. However, not all children
have a murmur so various other clues such as colour (pale, grey,
blue), respiratory rate and effort, contours of the chest swelling
of the eyelids are all looked at. On X-ray and enlarged heart and
congested lungs might indicate a congenital heart defect.
A electrocardiogram (using high-frequency sound waves) helps provide
additional information which may indicate the need for a cardiac
catheterisation. This procedure requires a stay in hospital and can
define precisely the extent and the location of the defect.
It is common for a congenital heart defect to give rise to a delay
in growth and weight gain, and in children with Down’s syndrome
there is often also decreased muscle tone and motor delay (i.e. they
are delayed in learning skills such as crawling, standing, walking
etc.). These symptoms usually improve after surgical correction of
the heart defect.
The most common heart defects among children with Down’s syndrome
are:
Atrio Ventricular (Septal) Defects (AV(S)D)
These involve a malformation of the walls and the valves between the
atria and the ventricles. The condition amounts to a ‘hole in the
centre of the heart, which can gravely affect the direction and the
pressure of the blood flow and impose a strain on the heart and
lungs. Nowadays this can often be corrected by major heart surgery
in infancy, but for a few babies this operation is not medically
advisable.
Ventricular Septal Defects (VSD)
These defects involve an opening in the septum or wall, which
separates the two ventricles. If a small opening exists, this will
not cause strain on the heart and, in some cases, the opening may
close itself. For large defects surgical correction may be necessary
- again this is usually carried out in the first years of life.
Tetralogy of Fallot
This is a combination of four defects:
1. A large hole between the two ventricles (ventricular septal
defect);
2. A narrowing in or near the pulmonary valve;
3. An unusually muscular right ventricle
4. The aorta receives blood from both the right and left ventricles.
This condition results in cyanosis or blueness of the lips and
fingernails. Total correction is difficult in infants but an
operation can be carried out to provide temporary relief.
Persistent Ductus Arteriosus (PDA)
All children are born with a ductus arteriosus - an opening between
the pulmonary artery and the aorta. Normally, the passageway closes
up within a few weeks of birth. When this fails to happen, some of
the blood that should go through the aorta and on to the body is
sent back to the lungs and the heart so imposing extra strain on the
heart. If this occurs the duct can be closed by a simple operation,
which does not involve operating on the heart, itself.
Atrial Septal Defect (ASD)
These are holes in the wall, which separates the two atria. They are
often quite small. If large enough to allow a significant amount of
blood to flow through they may need to be close by a surgical
operation. So-called secundum defects (openings in the upper part of
the atrial septum) often close on their own. Ostium primum defects
(openings in the lower part of the atrial septum) are very near the
valves and often need surgery.
Appendix II
The genetics of Down’s syndrome
There are three types of Down’s syndrome:
Standard (Regular or Primary) Trisomy 21
About 94% of all people with Down’s syndrome fall into this group.
This type of Down’s syndrome is always an accident of nature. It can
happen to anyone and there is no known reason why it occurs. The
parents have normal chromosomes, but the bay has three rather than
two chromosome of the number 21 pair.
Translocation
This type of Down’s syndrome occurs in
about 3% of babies with Down’s syndrome. Part of the number 21
chromosomes becomes attached to another chromosome so that both
parts of the new large chromosome move together as one. In about
half of the people who have Translocation Down’s syndrome, the
translocation is a one-off occurrence and does not mean that it will
happen again in any future pregnancies.
In the other half, however, it occurs because one or other of the
parent, though having a normal balanced chromosomal make-up, has one
of the number 21’s ‘stuck on’ to another chromosome. In this case
the chance of another child with Down’s syndrome being conceived is
quite high. Blood tests can be carried out to find out more detailed
information.
Mosaicism
This type of Down’s syndrome is also rare - only about 2-3 % of
people with Down’s syndrome fall into this category. In Mosaic
Down’s syndrome the cells with the extra 21 chromosome are mixed
with other ‘normal’ cells. In other words, only a certain percentage
of the cells are affected.
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