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Yes, My Son, an Adult with Down Syndrome Lives at Home - Mardra Sikora Mardra Sikora
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Yes, My Son, an Adult with Down Syndrome Lives at Home


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Marcus lives “at home”

Quinn makes Meme's from everything...it's an addiction...really.

Quinn makes Meme’s from everything…it’s an addiction…really.

The first thing you should know is this: Marcus is an adult with Down syndrome and he lives with us, not because he has to but because we want  to live together. Like millions, really, well over 6 million, families with adult children who live “at home” in the US today, this is the best option for us right now.

For the first 23 years or so, the most common question I received about Marcus was: “What will you do when he grows up?”

Now the most common question is: “Will he always live with you?”

I have an answer for this.

“Maybe.”

.

.

This well thought out answer is based on the following factors:

I like having Marcus at Home

Let me take you to a night many years ago.  I hopped downstairs in the split level home we shared with my grandmother. Quinn said, “You look happy.”

“I am.” I smiled.

That night circumstances brought my brother to stay with us as well. The joy of having so many of the people I loved near me and safe, brought the kind of contentment that warms from the inside.  SO, this is not a new emotional trigger for me, wanting the people I love near me and safe; it’s who I am.

Personally, I feel like the American nuclear family isn’t always the best idea. Extended families living together and taking care of each other, as is common in other cultures, may not be such a bad idea.

Old Mentalities

That said, in the “old days” people kept their adult children with Down syndrome in their home because a) they planned to outlive their children and b) the other option was institutionalism. These two factors are not the rule anymore.

The life expectancy of a person with Down syndrome is now 50-something so it’s probably best to plan on longer term care than outliving the child.  And who wants to outlive their own child?

 Options for an Adult with Down Syndrome

The second and more tangible issue is that an adult with Down syndrome has many more options now, each based on an individual’s capabilities. There are group homes that cater to various personalities as well as assisted living apartments and roommate options galore. Not to mention that some people with Down syndrome may choose to live entirely independently, Marcus isn’t one of them, but the options are expanding for many adults with Down syndrome.

 Independence & Marcus’ Personality

I could see early on he was both independent and also a homebody. As an infant, if there was an event that brought him out to entertain, as is every baby’s first and most important function, after so many oohs, tickles, smiles and cuddles, he would finally give me the, “Alright-Already,” look. And as I laid him in his crib or playpen you could see the relief cover his face. “Finally!” he seemed to say, “I thought you’d never leave me alone.”

He would get fussy not because he was tired, necessarily, but because he just needed his space.

And that’s the point I’m slowly, but surely, getting to; he needs his own space.

So at the time, I thought that may likely translate to him wanting to live in an environment away from, well, me.

 

Independent, but at Home

But then came Quinn. Quinn is perfectly okay and encouraging of Marcus living with us. The house we bought has a finished basement that we have considered turning into a small apartment.  There’s already a bathroom, there’s room for a living and small kitchenette area and a bedroom. But…there are no windows. So the investment to make it safe for sleeping and updated for Marcus to live a bit more independently hasn’t yet made it to the top of our chosen debt investment.

We’ve also talked about a duplex. But again, there is the cost consideration.

Of course, there’s also what Marcus wants. His first choice would be a hotel in Las Vegas or maybe London, wouldn’t we all? In the meantime, he agrees, home is the best deal.

There’s Time

If you’ve been following the short life of this blog, or you know me, you know that when it comes to Marcus, I am a terrible procrastinator. Lucky for you! Because I will be looking into the options for Marcus in our area, not because we are in any rush but because we need to know and have a back-up plan in place.

When we get to that, I’ll let you know.

In the meantime, don’t look at me like this is some heavy burden. Oy! This is our choice and we like it. In fact, as I type this, Marcus and Quinn are happily enjoying a Simpsons(r) episode together before we all do our part to clean up the house for a dinner party tomorrow. But you are still free to ask about it, really, ask away!

 

 
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15 Responses to “Yes, My Son, an Adult with Down Syndrome Lives at Home”

  1. Jenny says:

    I loved this! I remember when Russell was born how I cried over the thought that he would live with us forever. Now, it just doesn’t even phase me. So what if he does? And if he doesn’t, well he doesn’t! Either way we are a family and we love each other.

  2. Lisa Wright says:

    I love this article. What I love about it is the love it shows between your family. What a thought to not want to kick your kids out at the age of 18, and to enjoy living with them! You are truly looking at the future as one step at a time and truly looking at what is best for Marcus and your family.

  3. Kristi Lloyd says:

    I applaud you for choosing to live with Marcus! When I began working in a psychiatric hospital – too many years ago now – I noticed that one side of the hospital was reserved for “residents.” These people had disorders like Downs Syndrome, Mental Retardation, etc. My family was shocked when I explained that the residential unit existed because those people had families that couldn’t/didn’t want to care for them. Mardra, the world would do good to have more families like the two of us have!

    • Mardra says:

      You bring up a good point too, Kristi, because I know you’re pretty young. AKA younger than me:) That, while I’m sure and saddened that there still are institutional places like this for people with intellectual delays, There are so many more options now. Options that allow a person to live in the community and thrive with friends.

  4. Kelly says:

    Excellent article. I can’t really say anything more that hasn’t already been said, but there is one thing I need to make very clear:

    Put me on the backup plan list.

    I can’t (and more importantly, refuse to) imagine a life without Marcus.

  5. I am so proud to have you as a friend, ahead of me on this journey. This article reminds us that we can choose whichever option is right for our daughter when the time comes, and yes, living with her would be wonderful.
    H x

  6. Love that you have written this, it resonates strongly with us. We home educate or more accurately ‘world educate’ our children, including our youngest with Down’s Syndrome and we also choose whatever is right, right now and see life as a continuum, we love to have family around and living with us and we all happily imagine Magdalena living with us or one of her sisters for a lot of her life.

    • Mardra says:

      Thank you for stopping by and commenting. When we make these decisions with out children in mind, living and school arrangements, It makes me crazy when people look at us like, “Oh, poor you. You had to go that route.” Uhhh, No. We Choose to go this route.
      Eesh.

  7. Aedín says:

    This post made my smile-we all think that we should move out automatically at the age of 18, but in reality not everyone does!In Ireland there are many, many “normal” adult sons still living at home-some until they’re well in their 30s!!!

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