We are hearing, but are we truly listening? There are many blogs, articles, features, and TV shows that highlight families’ love of a family member with Down syndrome. Most of these say, without a doubt, they are much better people and have a far richer life due to their loved one having an extra chromosome. Yet, we still live in fear of getting a T21 diagnosis at the OB/GYN when the testing time comes. Shouldn’t we take what other parents are saying and listen to their words of hope and joy? Let that start to change our heart and how we, at the root, think and feel about Down syndrome and it’s impact to shape our lives . . . for the better?
One of the things that really helped with my fears on our way to adopt Abel, our son with Down syndrome, is that surely all these parents couldn’t be wrong. Guess what? They weren’t. Often, when I hear about a new mother-to-be receiving the news that her child has DS, I tell her I understand that grieving over what you thought was going to be is understandable and even important. But let me be the one who is celebrating this for you because when you are ready, I promise you, you will join the party.
Independence is overrated. One of the most often asked questions we get is about Abel’s future independence. At first, I found myself wanting to educate others about what is available for those who have Down syndrome as they grow up and pursue life, or to explain not all people with DS have the same level of dependence. But as I really thought about it . . . since when is the goal of humans to be independent (a.k.a. alone and not in need of someone), apart from maybe a few years in between college and marriage. For most of us, that’s the only time we live alone, and plenty of things happen in the full course of life that require the presence and assistance of those we love. From the young to the elderly, from the adventurer to the scared, from the busy to the lonely, I would say that needing each other is part of what brings meaning and joy to our lives . . . not robbing us of it. So now, I just say, “Well, independence is overrated. I’m thankful Abel won’t ever have to be alone.” We want to foster a life of togetherness, one that cultivates communicating needs over being too prideful to have any.
Those in the medical/therapeutic field, who see beyond the physical needs, are priceless. Two experiences taught me this. One was going to great lengths to have a pediatrician who is known for having patients with Down syndrome. While he was awesome and very knowledgeable about T21, he also approached Abel with a more checklist type of care. This year, my husband and I started seeing a family doctor who we loved, and it ended up that he was actually a better fit for Abel as well. He has lots of experience with peds, and he treated Abel as more of a toddler growing at his own pace and less of a checklist that needed to be accomplished, even if Abel didn’t appear to be in need of it.
The second experience was a VERY hard call to make. But after a year of therapy, we just realized it wasn’t working for us as a family. Please hear me: I’m not saying therapy isn’t wonderful or helpful, but in the season of life Abel and our family were in, it just wasn’t benefitting us as much as it was complicating home life and frustrating us. The lady in charge of the therapy company didn’t agree with our decision, nor did she know me or Abel, but she just couldn’t imagine a mom of a special needs child not wanting to continue with therapies. However, our therapists, who I had quickly become friends with, did trust me as Abel’s mom and as someone who knew him best. They assured me of their continued friendship. I know they are there for me as I learn my child and assess his needs as they come up through the years.
As we prepare to adopt a little girl this month, who also has the love chromosome, I know that her needs might vary from Abel’s. The best way I can know that is by studying her and advocating for what she needs most. It might be providing a calm schedule at times . . . and other times it might be spending lots of time with awesome therapists.
There are still misunderstandings out there about Down syndrome. I’ve had three people who ask how we will handle it when Abel dies young. Yes, that’s the face I was making too. Hello . . . the 1920s called and they want their question back. Each time I gained composure — and gave them the benefit of the doubt that maybe they hadn’t read about how life expectancy of those living with DS is pretty normal, and how far medical technology and overall society acceptance has come that has greatly extended the average lifespan of those living with DS. I’ve had people tell me they prayed that God would heal my son of his Down syndrome. I bet God got a chuckle out of that one. But I’ve also had a ton of awesome people ask awesome questions because they have never met anyone with DS, and they want to know and embrace Abel for all he is.
There is so much support and understanding about Down syndrome that families with other special needs wish existed for them. From the diagnosis process, the availability of medical and community support, to the general public acceptance of those with obvious Down syndrome traits and mannerisms . . . Down syndrome is known and not avoided, and not a lot of fear is associated with those who have it. This is so not the case for many parents who have children with lesser studied and known special needs. I’ve had a sweet mama who has a son with autism tell me she wished she had the support for their family that I had for mine. It’s easy to take one glance at my child and smile with understanding when something happens in public that’s maybe disruptive or a result of trying to communicate. But smiles aren’t usually what my friend receives when her son yells or can’t understand something in the store, movies, or wherever . . . because there’s nothing telling that says “Hey, I have autism. I’m important, and I’m learning a lot. Will you be patient with me and my parents?” So, while DS gets a lot of attention in the special needs world, and I’m glad it does, let’s be advocates for those mamas who are fighting for more awareness for their unique needs as they parent a child with just as much of a special need as my child.