Just about every parent of a child who has Down syndrome has cited the moment they found out their child’s diagnosis, whether it was before their birth or during the first few years of life, as a defining moment, they will never forget.
For those who may not be aware, Down syndrome is a congenital condition in which a child is born with an extra chromosome, specifically chromosome 21. This extra chromosome alters the child’s development and results in the characteristic physical features of Down syndrome, such as low muscle tone, upward eye slant, and small stature. However, it is crucial to understand every child diagnosed with Down syndrome is different, just as every child, in general, is different.
With this in mind, however, parents of children with Down syndrome can expect to have certain challenges and shifts in their lives beyond what parents of children without special needs might require. Start reading to learn about information parents of children with Down syndrome may want to know and understand about raising their beautiful child.
Learn The Facts About Down Syndrome
Although there is an overall understanding of what Down syndrome is, there are many common misconceptions about this condition, including about the abilities of those who have it. This makes it crucial for parents of children with Down syndrome to learn all the facts about the condition, so they are informed and cast away any previous misconceptions. For instance, some may believe individuals with Down syndrome will not be able to live the same sort of life as someone without special needs, such as having a steady job. But this is far from reality! Although there may be more challenges in some cases, there is no reason why a child with Down syndrome cannot live a full life.
Continue reading to learn about the importance of a village when raising a child.
It Takes A Village
It may be a cliche, but it really does take a village to raise a child. Besides parents, children need teachers, friends, and yes, medical professionals to help ensure they grow up happy and healthy. All children should have a primary doctor, a dentist, and even an optometrist. Since children with Down syndrome often encounter additional challenges, they often require other specialists, such as a speech therapist, physical therapists, as well as a pediatrician who specializes in Down syndrome.
The pediatrician who specializes in Down syndrome is particularly important, as many general practitioners do not have the same expertise or the time required to dedicate towards children with Down syndrome. These pediatricians will be able to put parents in touch with the necessary specialists for different aspects of Down syndrome and will know which ones have the expertise in handling this condition specifically.
Continue reading to learn about the importance of support systems for parents of children with Down syndrome.
Build A Support System
Whenever a significant medical condition comes into the picture, regardless of who has it, support systems are invaluable for both the patient as well as their family. This can include medical professionals, of course, but getting in touch with other parents of children with Down syndrome can be incredibly helpful in terms of sharing experiences, but also in the sense these parents can have as close of an understanding to this situation as possible. It may not be exact, of course, given every child with Down syndrome is different, but it is as close as it gets. In addition to building a support system for yourself as a parent, many places also offer support for your child both in their developmental years as well as later on in life. Ask your doctor for information and do some research to find out what your city and area offer!
Raising a child with Down syndrome does take a lot of work, so continue reading to learn about the power of time for yourself.
Take Time For Yourself
When someone becomes a parent, even if their child does not have special needs, their world shifts to focus on their child. What does their child need? What do they enjoy? A child with Down syndrome will often require extra attention, more structure, additional doctor’s appointments, and more. This extra time and all of the information medical professionals will talk to you about as parents can get overwhelming. Taking care of yourself is crucial to not only avoid burning out and becoming ill but also to be a better parent overall. Perhaps this means taking a long bath after your child is asleep, going out with friends every second week or so, exercising regularly, or simply ensuring you are eating a balanced, healthy diet. Figure out what works for your schedule and needs, and always make a point of keeping it in there!
Continue reading to learn more about the power of a daily schedule when it comes to raising a child with Down syndrome.
Create A Daily Routine
Children with Down syndrome, like the majority of other kids, do exceptionally well with routines. Look at your life and determine the normal activities. For mornings, try something like getting up first, going to eat breakfast, brushing teeth, and then getting dressed. Many parents of children with Down syndrome find creating a board with the schedule and sharing it with their child quite helpful, especially when they include pictures. When the activities are changing, clear and simple instructions are key. Children with Down syndrome in particular benefit from one instruction at a time, such as ‘wash your hands’ instead of ‘it’s time for dinner: clear the table, set the table, and wash your hands please.’ Have them repeat instructions back to you, so you know they understand what they need to do.
Children with Down syndrome can benefit greatly from responsibility as well as control, so try giving them a weekly chore to complete for teaching responsibility, and something like picking out their clothes for the day for a bit of control and independence. These can be done in small chunks based on your child. Remember, it’s all about what works for your family! When it comes to school, you can offer help when it is necessary. Be sure to use positive language when your child makes mistakes, such as ‘why don’t we try that again?’ The focus should be on their needs rather than Down syndrome.
Continue reading to learn about dealing with traditional milestones.
Avoid Comparing Milestones
Babies and children go through a series of milestones as they grow, such as when they start crawling, walking, and talking. Unfortunately, too many parents get caught up in comparing when their children hit these milestones, which can lead to unnecessary worry and stress if their child appears to be falling behind in comparison. It is crucial to understand all children develop at their own pace, even when Down syndrome is not a concern. It is true, many children with Down syndrome do face delays in reaching these milestones, but this does not mean that they will never get there.
Instead of comparing your baby to others, focus on what they have achieved and celebrate those accomplishments. The other milestones will come at some point, and it will be a glorious feeling for you as well as your child when they do!
Your Baby First
When all is said and done, as a parent you are raising your child. Your child is a unique individual with their own stellar personality. They will still have features resembling you and other family members in addition to their features that stem from Down syndrome. If you have another child who does not have Down syndrome, it is nice to know they will share a lot more in common than many might think. Perhaps the best piece of advice parents with children who have Down syndrome will share with other parents about to raise a child with Down syndrome is this: put your focus and love on the life rather than the label. After all, while it is a significant diagnosis, Down syndrome does not define anyone who has it.