Frequently asked questions

We hope that this section will help you with many of your questions, the answers to these have been gained from years of being involved with the effects of Down Syndrome on parents, families and children.


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New Parent - Frequently Asked Questions


When will I stop crying?

Don’t worry. You will!! Be gentle with yourself. Someone has just come along and turned your world upside down.

People vary enormously in the way they react and in how long it affects them emotionally. Mums, in particular, are prone to tearfulness at regular intervals. It’s OK. It’s normal. And if you need a shoulder to cry on and you haven’t got one handy then give us a call we have special reinforced waterproof (yet comfortable) shoulders, tailor-made to meet your needs.

Calling all Dads, we have dads who are more than happy to talk through any issues you have. If you would prefer to talk to a man rather than a woman, it’s not a problem.

Will my child go to mainstream school?

Your child can go to the school of your choice. The vast majority of our children go to mainstream schools and research has proven that children with DS do better both socially and academically in mainstream school. In mainstream school, your child would have a teaching assistant to help them access the curriculum fully and provide whatever support your child as an individual requires.

If different children with Down Syndrome have different levels of ability can you tell me to what extent will my baby be affected?

Your baby is your own unique, amazing little human being. He or she is your son or daughter and will have characteristics inherited from your family just like any child of yours would. Some people worry that if their baby/child seems to have more obvious facial characteristics common in Down Syndrome, then that might mean he or she is more affected by the condition. This is not the case. There is no predictor of how able your child will be.

Wendy: “My son was seen by an Educational Psychologist at three and a half months old a few weeks after heart surgery, and then again at four years and one month. She admitted that on seeing him as a baby, she had thought him to be particularly badly affected and a bit of a blank page. She was staggered to find him reading with a sight vocabulary of around 70 words at just four years of age before he started school and signing to make up for his early speech delay with a signing vocabulary of over 300 words.”

Which areas of development your child will find easy or challenging is anybody’s guess, so try not to worry about it endlessly or imagine every possible outcome or concern the future may hold. Just enjoy your precious bundle and know that as every milestone may be that bit harder to achieve it just makes you all the more proud. Your child’s first steps are going to make you want to take out a full page double spread in your local paper to tell the world.


Are there different types of Down syndrome?

Yes, there are three types:

  • Trisomy 21 in which all the cells have an extra chromosome 21. About 94% of people with Down Syndrome have Trisomy 21.
  • Translocation in which extra chromosome 21 material is attached to another chromosome. Around 4% of people with Down Syndrome have this type.
  • Mosaic or Mosaicism in which only some of the cells have an extra chromosome 21 (the proportion of cells with an extra chromosome can vary considerably and so the affect this has can vary accordingly). Only around 2% of people with Down Syndrome have this type.
What is Down Syndrome?

Down syndrome is quite simply the presence of an extra chromosome in the body’s cells. Instead of the usual 23 pairs, individuals who have Down Syndrome have an additional chromosome 21. Down Syndrome is not a disease, and the standard trisomy 21 type, is not a hereditary condition.

People with DS do have a learning disability, but this varies enormously from individual to individual, just as the abilities of typical children vary. Certain physical characteristics can be common amongst people who have Down Syndrome, and they are sometimes more prone to certain medical problems. However, the most important thing to remember is that everyone with DS is an individual, with their own character and personality, their own strengths and weaknesses.

When will my child be able to walk, Talk, Be toilet trained?

When you have a typical baby, you don’t think to ask these questions. You just presume your baby will develop and will do these things at an age-appropriate time. You may be surprised to know the very wide age range within which typical children achieve these developmental milestones.

Our children too have a wide age range within which they achieve various developmental steps, and as with typical babies and children, no one can predict or tell you exactly when they will get there. They are likely to be delayed and later than typical children in some areas, but they can still surprise you. We have parents who were told that their child had very poor muscle tone and would never be sporty and yet have gone on to enjoy skateboarding, snooker, BMX bike riding, golf and football.

Remember, although no one can promise you what your child will be able to do NO-ONE can tell you what your child WON’T do.

Will my child be bullied?

In our experience, typical children are incredibly encouraging and caring around children who have DS. Sometimes the other children can have a tendency to over mother a little but this is easily addressed and overcome by our going into school and talking to the other pupils.

Why has MY baby got Down Syndrome? Its not fair.

No-one knows what causes the presence of the extra chromosome. It sometimes surprises people to know that it can come from either the mother or the father and it occurs entirely by chance at conception. There is no way of predicting if a person is more or less likely to make an egg or sperm with 24 chromosomes.

Even though there is an increased risk with increased maternal age (for reasons yet unknown) most babies with Down syndrome are born to women under the age of 35, as younger women have higher fertility rates and more babies. If you are looking for someone to blame or blaming yourself, then please don’t! Nothing done before or during pregnancy can cause Down syndrome. It occurs in all races, social classes and all countries throughout the world. It can happen to absolutely anyone. It even occurs in the animal kingdom. You may find yourself looking enviously at other people’s babies and children and thinking it’s not fair and it’s ok to feel that. You’re only human.

Give us a call if you need a rant at the world or an understanding ear. 01278 691100

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