Children born with Down syndrome have 47 chromosomes instead of the 46 chromosomes seen in other children. They have an extra copy of the 21st chromosome. This extra chromosome causes a physical and mental delay in the child's development.
These are the facts that your genetic counselor will go over with you when you first learn the diagnosis. But what about the things they don't tell you about raising a child with Down Syndrome? Some parents are overwhelmed with sadness and despair.
Raising a child with special needs has its challenges, but there will be so many shining moments that you probably won't even remember them all. Here are some things that you need to know about raising a child with Down Syndrome.
10 The Baby is a Baby First
When a baby was born with Down Syndrome that does not mean she or he is "the Down Syndrome baby." Do not let the label define a baby. She is simply a baby - a unique individual who will laugh, cry, walk, talk, and love. She will have all of the same needs as any other newborn baby when she is born.
There will be cute little fingers and tiny little toes. There will be cute little onesies and pink balloons. There will be sleepless nights and lots of poopy diapers. She will have her mother's features and take on some of father's mannerisms as she grows up. She will have her own beautiful and individual personality.
Parents don't dream of having a special needs child. It isn't something that anyone wishes for. But parents will be amazed at how much they love their baby, even though they don't love that she has Down Syndrome.
9 Find the Facts
There is a lot of information out there on Down Syndrome, and a lot of it is inaccurate. It is critical for parents who have just been given the diagnosis for their child to have accurate and up to date information. A lot of the information out there is outdated and paints a much worse picture than it should.
It came from a time when all of the advanced medical and therapeutical options were not available. Society has since embraced Down Syndrome and has invested in the children born with it. Life expectancy has doubled to almost 60, and people with Down Syndrome are living more independent lives than ever before. They complete high school, go to college, and get married.
Down Syndrome is not as negative a diagnosis as it used to be. There is no more doom and gloom. Most people with Down Syndrome thoroughly enjoy their lives, and their parents thoroughly enjoy raising them.
8 Find Support Systems Early
Down Syndrome is the most common autosomal abnormality in humans, and that means that there are many people out there who have been through it and know what kind of support a new parent needs. Connecting with another person offers new parents someone to talk to and get advice.
It is easy to connect with other parents raising kids with Down Syndrome. Most local communities have support groups for the entire family. The internet also offers tons of online support options. You can search "Down Syndrome" on Facebook to find groups to connect with.
It's important to start to build a support system with the people around you. Your friends and family will need to support you. You may need help taking your child to therapy or a doctor's appointment. You may need additional help working through the various exercises and routines at home. A supportive network of friends and family will be essential.
7 Start Therapy and Interventions Right Away
Children with Down syndrome require more frequent appointments with specialists and therapists as they grow. It makes a big difference to visit doctors who specialize in Down Syndrome because the doctor will know what to look for and how to properly diagnose and treat her patients. This doctor will be up to date with all of the current research and advancements and be able to recommend the best treatments and therapies for the child.
The child will need speech therapy as well as physical therapy. The sooner parents start these interventions, the better for their child. Keeping up with all of the appointments can be daunting and challenging. This is why the support system is critical. Enlist help from friends and families because these therapies are essential for the development of the child.
6 Many Emotions
It is a common myth that people with Down Syndrome are always happy. The truth is that the baby will be happy, sad, scared, and angry. The baby will have all of the same emotions that any other baby would. He will not always be happy.
He will cry when he falls, and he will shout in disappointment when he doesn't get what he wants. He will be silly and try to make his parents laugh. He will test the limits and push parents to their limits just like any other child.
As a parent, you will experience the same range of emotions with this child as any other child. Don't let anyone tell you differently. Babies with Down Syndrome really aren't different emotionally than babies without the syndrome.
5 Prioritize Communication
Children with Down syndrome want to communicate just like any other child does. They have a lot to say and deserve to be heard. Because of low muscle tone and other factors, children with Down Syndrome tend to have delayed speech and difficulty with articulation.
But this doesn't mean parents can't communicate with them. Sign language is a great option if the child is struggling with verbal communication, and it can be taught to very young infants and toddlers and allows them to express themselves.
Thankfully, the world of speech therapy has come a long way. Speech therapists are able to help their baby improve their communication by giving exercises to increase their muscles. Strengthening these same muscles will also help them eat correctly. Therapy can start very young - in the first year. The sooner the therapy begins, the better the results.
4 Major Milestones
Children with Down Syndrome go through all of the same stages of development as other children without the syndrome. They may need more time and assistance from therapists, but they will get there. These children will sit, walk, talk, and potty train. Try not get anxious or push the child too far or too fast. Let her develop on her own timetable.
Try not to compare the baby to the typical developing baby. Parents risk diminishing their child's accomplishments when they do this. Children with Down Syndrome follow a different milestone chart and should not be compared to a typical child. The milestones may take longer to hit, but the pride parents will feel when it happens will make it even more special.
3 Focus on Child's Strengths
Sometimes it can be easy to get caught up in the physical and developmental challenges that the baby faces each day. Instead, focus on what makes the baby unique. He will have his own very distinctive personality and strengths.
Focus on what he does well instead of what he struggles with. Enjoy his wins instead of focusing on his weaknesses. This will lead to a more positive environment for both parents and their child. He may never be a math wizard, but he may end up being the best actor in his class or a world class chef.
There are virtually no limits to what he can accomplish. Relish in everything he does well.
2 Down Syndrome is Beautiful
There are many beauties of Down Syndrome. These children will take their parents' breath away with their acts of kindness, their laugh, and their giggles. They will bring beauty to the world like parents have never experienced before (even if they have other children).
Raising a child with Down Syndrome will soften a hard heart. Parents of children with Down Syndrome will see people for who they are regardless of their abilities or appearance. These parents will celebrate the small things in life that many people often overlook or take for granted.
A Down Syndrome child will change the dynamic of their entire family in a good way. Siblings of a child with Down Syndrome will have a higher level of compassion towards others that they will carry through their entire lives. Parents of a child with Down Syndrome have a much lower divorce rate. A Down Syndrome child will unite the family like no one else would ever be capable of.
1 Down Syndrome Doesn't Define Children
The moment parents first hear the words "Your baby has Down Syndrome," it may seem like those words will forever define him. Parents may feel that every time they or someone else looks at their child, the words will flash across their minds. The truth is that the news that a baby has Down Syndrome will not overshadow his life. He will become part of the family and the family will fall more and more in love with him every day.
He will be loved. Parents will love him (of course) because he is their baby. But others will also love him. Friends, family, teachers, and neighbors will all take a special liking to the child. Parents will be surprised at how many people love their child throughout their life.
Everyone will enjoy him for who he is, and it will have nothing to do with what he has. There will be lots of things that happen in his life (both good and bad) that have nothing to do with that extra chromosome. Over time, the words "Down Syndrome" will largely fade into the background. Down syndrome will not define any child!