I had a conversation with the father of a woman who has Down Syndrome (DS) and this conversation taught me a few things. I learnt that there are parents out there, who upon getting the news that their child has DS, react the way most of us do: we feel sad, angry and/or depressed. We are in disbelief. Frankly, we are devastated…more so if we live in a developing country, where resources and support for persons with disabilities (especially intellectual disabilities) are as rare as an honest politician. We just feel lost and understandably so.
I also learnt that there are parents who, despite the child now being over two decades old, are still stuck at the place where they first got the news. What do I mean? Well, one case in point is where the father mentally checked out when the child was born. He stayed with the mother and provided financially. However, he was not the one to bring the child to the various doctors. He did not attend the parent group meetings. He did not spend time with his child to get to know what that child is capable of doing. Instead, he just saw what the child could not do. He never did any research to find out what DS really is. He never sought help, guidance or mentors. So now, two decades later, he knows little to nothing about DS and he knows little to nothing about his child’s capabilities and skills.
Now, don’t get me wrong…I understand being scared, lost and feeling helpless. I get that. I however have a question for the parents who are similar to the father I described earlier…by you being stuck in the past, have you helped or hindered your child? Have you placed limits on your child, thus preventing them from reaching their utmost potential?
It’s Not Too Late
If you find that you honestly have not been playing an active role in your child’s life, if you realize that you really do not understand what it means for your child to have a learning disability like Down Syndrome, then I suggest the following to you:
Deal with whatever feelings you had/still have when you found out your child would have a disability. Be honest with yourself. How do you really feel about the fact that your child has DS? Seek counseling. Get professional help to deal with all the emotions/feelings you are experiencing. Bring your spouse along with you to counseling. Deal with this together. Support each other.
Get to know your child. Spend time with them. What do they like to do? What do they do well? How can you help your child to hone their skills? Can they turn that skill into income? Can you teach them to live independently? Go the extra mile. Push your child to his/her limit. Do not “baby” them. Help them to do all that they can do.
Regularly attend parent groups meetings. Parents with older children can be your mentors and in time you can become mentors yourself.
Get educated. What is Down Syndrome? What does it mean to have an intellectual disability? Does it mean your child will never do things or does it mean that it will take them a longer time to do things?
Check out the A&E TV Series “Born this Way”. What is DS like for other persons? Not all our kids will be as high functioning as the persons on this show, but at least educate yourself on other persons’ experiences.
Check out the Attitude Channel on YouTube. They showcase videos like the following that speak to independence:
Help You Child. Don’t Hinder Them.
As a parent, it is your job to take care of your child. I know you didn’t plan on your child having a disability. Similarly, your child didn’t ask to be born nor did they ask for DS. So, you have to make the best of your situation. Step up to the plate. If you don’t’ know what to do, seek help and guidance from those who have gone before you, but do not throw your hands up in the air and give up. Get the help you need to assist your child to become their best self.
We all need help and encouragement. Do you have any tips for parents who are struggling? Please share your thoughts!