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!
What an inspiration!
This should be a MUST view by all parents with challenged children.
Our 10th child (yes 10th), is now four years old, but her development is that of a two year old. She is so sweet but not yet talking in a coherent way, she is somewhat slow to understand basic instructions, and still unable to dress herself.
We went to a specialist and so far we are treating it as ‘delayed development’ syndrome but the doctors have suggested that it could be borderline Down’s syndrome, we have yet to see the final outcome.
As parents it came as a bit of a shock and the first instinct was to blame ourselves, what had we done wrong. The immediate second instinct was to ask ourselves what can we do to help her.
Thankfully there is a lot of support out there, and realising that you’re not the only ones in that position is a great benefit.
I think this site will go a long way to helping parents, both practically and psychologically.
I will be sharing this to friends and family that find themselves in a similar situation.
Hi Abdusalam,
I am so happy that you were inspired by this post. Wow! Your tenth child…I get the feeling there’s never a dull moment in your house 🙂 As it relates to your babygirl, I can understand the shock and desire to blame oneself, but I am so happy to hear that your next reaction was one of “what can we do to help her”. Absolutely wonderful. Just continue to do your best as a parent. She is lucky to have you.
Thank you so much for your encouragement and please come back to HappyDowns and visit anytime and share your stories.
Take care!
I have always been a great help to my children and have developed them in so many ways. While talking about child development, I have developed my children mentally, psychologically, emotionally, physically, academically and in all ramifications of life. I had been a good parent to them in all ways and will continue building them for a greater tomorrow. I have always believed that children of today are the leaders of tomorrow. Children must be helped as this is the primary responsibility of every good parent.
Hello Pioneer80,
It is so good to hear that you have been such a positive influence and force in the lives of your children. Great job! You are an excellent example of what a good parent should be doing. Keep up the good work!
Cheers!
Thank you so much for your informative and inspirational post. Many people forget how much they influence the life of their children by their attitude to them, whether they have Downs Syndrome or not. A lot of parents do what you describe and hinder their children because they are not what the parent imagined for whatever reason – not sporty enough, not ‘intelligent’ enough, whilst forgetting that we are all individuals and have our own path. We should all be cherished for the wonderful and special people that we are, making up the diversity and splendour that is on our planet. Thank you for the reminder.
Hi Gail,
Thank you so much for your kinds words. We are indeed all individuals and definitely have our own paths. I hope the parents/caregivers who read this post will be reminded of that and accept their children for who they are.
Feel free to stop by HappyDowns anytime.
Cheers!
As a person who has a family member with downs, I have noticed a couple things. First off, people with downs tend to be very kind-hearted, humble people, generally speaking. The general population could learn from them. Second, I noticed that it can be very difficult to be a parent of a child with downs. Although the father in your example comes off as cold, I do understand his why.
Hi Nik,
Thank you for stopping by HappyDowns. You are right – persons with Down Syndrome tend to be wonderful people who are loving and kind…imagine if we all were more like that…it would be amazing. Yes indeed, it’s not easy being a parent of a child with a disability and it is not hard to see why the father “mentally checked out”…this happens to a lot of persons actually. But I would like to encourage parents to get whatever help they need to do right by their children… disability or not.
Thanks again Nik for visiting HappyDowns. Please stop by again soon.
Take care.
Greetings! I just have to say it’s a wonderful thing you’re doing here with your post in raising the important issues that arise when raising children with disabilities. During medical school, I came across many pediatric patients with both physical and/or mental disabilities. Fortunately, from my experience, I could tell the parents of these children deeply loved them and were doing their absolutely best to provide for their children and optimize their potential.
It just so happened that one of my instructors during medical school had a son with Down Syndrome and brought him to our class one day to interact with the class. It was truly heartwarming to see how happy the son was getting to interact with our class and how much his parents loved him. Thank you again for this insightful post.
Hi Kent,
Thank you for stopping by HappyDowns and for taking the time to share your thoughts. I am happy to hear that the parents of the children that you met were so loving and even happier to hear that you got the chance to interact with someone who has DS and thus see how great people can be despite their “differences”.
Feel free to visit us at HappyDowns anytime to share more of your experiences.
Take care.