I have been putting off this article, quite honestly, since the creation of AKC. This isn’t something I speak about often in regular life, much less on the internet, not because I am ashamed or embarrassed, but because I’ve struggled with what to say – with how to broach this topic and do it justice. So, with that in mind, I’m just going to simply speak about my own personal experience and offer some advice.
My youngest daughter, born 10 minutes after her twin, was diagnosed at birth with Down Syndrome.My wife and I ran the emotional gamut when the doctors suggested running a blood test to determine if our daughter did indeed have Down Syndrome. There was plenty of denial, apprehension, and sadness – not sadness for us, but for the life our daughter would live. You see, my wife has worked with individuals with special needs most of her life, befriending those at school and wherever she worked. She’s seen firsthand the ruthlessness others can have for those with special needs, not because of something terrible they’ve done, but simply because of who they are. As you can imagine, we didn’t want others judging our child simply because she was different.
I distinctly remember our conversation the day she called me with the blood results. It was a sunny day in July. I was outside walking around the parking lot at work. She asked me if we knew before she was born that she had Down Syndrome, would it have changed what we would have done. Without hesitation, I told her no. She was glad to hear it. We were a united front, trekking forward into unknown territory.
My wife, with her previous experience working with those with special needs, had quite a leg up on me. I had very little experience with small children (besides my own), let alone a child with special needs. I simply didn’t know what to do or how to treat her. I loved her just as much as my other children, but I found myself treating her like a fragile piece of China, unsure what to do.
It wasn’t until a vacation we took in the winter that I really began to bond more deeply with her. I was able to let go of the apprehension of doing something wrong and we became very close. Nowadays, she’s my little buddy and she can often be found snuggling with me on the couch or having tickle wars.
Don’t Underestimate Them
Just because a child has special needs doesn’t mean they are helpless. I personally know one kid with Spina Bifida that has ran, yes ran, multiple 5Ks using only his crutches.
My daughter, though behind her peers, is wickedly clever. She is known at our church as the Little Houdini as she will often escape from the nursery area, waiting for the perfect opportunity when the teachers are distracted.
She isn’t very verbal, due to some complications with her ear canals when she was an infant, but she is very much aware of everything going on around her and understands more than she lets on. The old cliché of “if the kids are quiet, you need to be worried” might not apply to my other two daughters, but if my youngest daughter is quiet and outside of my line of sight, my alarms start going off as she’s likely doing something she knows she’s not supposed to.
Celebrate Every Milestone
Having a child with a special need can often be frustrating, especially if you have older children as they might not hit the big milestones at the same time their siblings did. This can leave you feeling like you failed your children. It took a lot of letting go on my part to quit stressing about these kinds of things and simply enjoy the process of teaching our daughter what she’d need to know in order to be ready for kindergarten.
For a long time, she never seemed interested in potty training. We’d work with her daily, but to no avail. We’d heap on praise for her sitting on the toilet even if she didn’t use it, walk her through the steps of wiping, flushing, etc, but she simply seemed uninterested. We were concerned that she wouldn’t be ready for kindergarten at this rate.
Then one day, she just walked into the restroom and pointed at the toilet. Unsure of what she wanted, my wife and I asked her if she needed to go to use the restroom. She pulled down her diaper, got on the toilet and voila!
She still wears diapers as she’s not 100%, but she’s taken huge strides in both potty training along with her writing, numbers, letters, and colors. The whole time, we celebrate each step forward she takes. We appreciate the little things that we took for granted with our other daughters more.
I’m not sure if this will help any other men out there going through a situation similar to mine or who may go through it in the future, but I just wanted to put this out here in the chance that it does.
I wouldn’t say that having a child with special needs completely changes your world, but it will certainly change your outlook on certain things. I have become a lot more sensitive to the use of words like “retarded” when used as a general insult about something. I generally overlook it when it’s used in discussion even though it does feel like a small thorn in my side. What has really set me off in the past though is when someone compares someone they don’t like to someone with Down Syndrome, as you can imagine. That’s a direct insult (whether they intended it or not) to my daughter, a beautiful little girl who shows love and compassion to everyone she meets.
All parents adapt to having children with special needs in different ways. My wife is very big into integrating with the special needs community and interacting with other families while I prefer to opt out of such things. Neither approach is wrong and I value the benefits that my wife’s approach has. It will let our daughter know that there are many more children out there with situations similar to hers and that they are accepted. If interacting with the larger community of special needs works for you, more power to you. While that isn’t my scene, mainly because I am naturally more of an introvert, I have adopted some of my wife’s zeal for helping others within the community – in our case, by starting a special needs martial arts school.
I’m not sure what the future holds for my daughter, but I do know as long as I breathe, she will know love and acceptance. We hold her to the same standards as our other daughters and do our best to prepare her for when we won’t be here. That’s all we can do as parents. In closing, I have four words of advice:
- Do what works best for you and your family.
- Ignore those who will judge your child without ever getting to know them.
- We are more similar than we are different.
- Celebrate life in whatever form it takes.