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<\/a><\/p>\nOur son, Jared once told me that he wanted to open a business for the purpose of connecting with new parents who find out they have a child with Down syndrome. He said that he wanted to talk to them, to share his story, to tell them what they have to worry about. Those were his words; \u201cto worry about\u201d. I found that interesting; Jared knows that raising him has not always been a piece of cake. He seems to get that there certainly has been a lot to \u201cworry\u201d about. There has been a lot of joy too, but this post is a reflection of some worries I never thought I would have, yet am blessed now to add them to the list.
\nSo here it is; this is what you might need to worry about:
\nFull inclusion in school has morphed into full inclusion in life. With this new generation of individuals with Down syndrome, we have to think of things we never thought possible. Parents, save some money for college, as there is a really good chance your son\/daughter is going to go. They are going to leave home. They need to learn to depend on themselves and other people who are not family. They need to learn to be self-directed, to navigate a world that still needs to get used to them. They need to know how to cook breakfast, do laundry, and be a friend. They need to know how to ask for a job; to just walk in and ask; to tell a manager what they are capable of and what they can bring to an organization. It is still really hard for individuals with disabilities to find understanding managers who will take them on, who will see beyond the disability to the qualities that make work possible. Your son\/daughter will need to knock on a bunch of doors and deal with disappointment when he\/she is told no, but they still need to try. So, teach them success skills. Encourage them to look an employer in the eye and tell them what it is they are good at. Tell them to persevere. Foster grit; don\u2019t let them give up when it gets hard. Let them struggle while you stand safely at a distance. Going through school alongside their peers has taught these young men and women responsibility. Let them use that experience to find and keep a job. It will take time, but we have to let them try.<\/p>\n
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\nWe have to worry about them falling in love. We can\u2019t be uncomfortable with their intimacy. They are not big children; they are men and women with romantic, sexual feelings that must be addressed. If we want them fully included, then that becomes part of it. Get them the help they need to figure out the messiness of relationships. Counseling works. I\u2019ve learned that it\u2019s best if someone other than a parent offers guidance and support sometimes. Talk to them about their intentions. Ask them why they love their chosen person. Listen to them. I\u2019ve found that I can\u2019t brush off Jared\u2019s grown up feelings, even though it would be easier for me if he just stayed a big kid, not this passionate young man who sits in front of me today. When he tells me that he wants to be a father, I have to worry about how I will convince him that it would be really hard for him to raise a child, without him thinking I regret any bit of his upbringing. He wants to have a baby, but I have to let him know the risks; \u201cDown syndrome is the easy part. It\u2019s the heart surgeries, thyroid problems, as well as other auto-immune diseases that attack the body, that keep me up at night. I don\u2019t want that for you,\u201d I say to my son, my grown son, as tears stream down my face. \u201cI don\u2019t want you to have to be scared for your baby.\u201d He asks me if I was scared. And I tell him yes. I tell him that the hardest thing in the world is to watch your baby be sick. I try to focus on the good things; We talk about how all of his attention can be on the wife he chooses if he doesn\u2019t have to worry about a delicate baby. We talk about how he can still be part of a family and keep a home, even if he doesn\u2019t have a baby. We talk about how much fun he will have, how he and whomever he loves can travel, how they can do so much together. We will have to have this same conversation a few times before he really gets it. Am I doing the wrong thing, telling him so bluntly the facts, the cold hard facts? I don\u2019t know and I worry about that too; I hope I\u2019m giving him the best advice. It is the same advice I would give any of my kids if the same risk factors existed. It is my responsibility to guide him as he grows, to lay out the facts and hope that it all makes sense. I worry that I am the first voice of reason, the first dasher of dreams, but it would be cruel to pretend that everything will be perfect and easy. I work at finding the balance between supporting Jared\u2019s dreaming and goal setting and what can truly be. I know Jared will have an incredible life; he\u2019s already doing that. I\u2019m enjoying watching him thrive as he walks proudly into adulthood, with a swagger that, if you know Jared, you can just see. I will always worry, but pride, joy and love will be at the forefront.<\/p>\n