By Regina Britt, Worthington, Ohio
Editor’s note: Britt has respectfully chosen not to use her daughter’s name in this article.
When my daughter was young, I remember mentioning to her gym teacher how much she had improved since she was in his class, considering her disability. I have not forgotten his thoughtful response: “I never see her for her disabilities. She has endless abilities — we just have to find ways to bring them out.” From that day forward, I have always viewed her for her endless abilities.
My daughter has always had lofty dreams. Some have come true, others have not. When her dreams seem a far reach, I have found a very useful strategy is to break things down step-by-step. When she wanted to learn to drive, I took her to get the driver’s manual to study. She did, but never seemed comfortable enough to try taking the test.
When she wanted to go to college, I suggested starting with one class. Our community had no supports for college, so I drove her to a night class. It took an hour in traffic to drive to the 90-minute class. We got home quite late each night. Despite getting a C in the class, college did not seem so exciting after one semester. Still, we always tried — step-by-step.
When she fell in love, my daughter had a new dream — to get married.
How do you prepare a young adult with Down syndrome for marriage? Wow. The answer is so dependent upon the couple’s skills and abilities that I think every situation is unique. So, where to begin?
My daughter has been engaged for eight years. When she first got engaged, I thought “Oh my goodness, what should I do?” I asked the county caseworker if she and her fiancé could have counseling to try and ensure they had the relationship skills they would need so their marriage would be successful. The reply was, “She can, but he can’t. However, if you let them get married, then they can both have counseling.” So I have to make my daughter get married so she and her fiancé could get counseling to help ensure that marriage was a healthy choice for both of them? Absolutely not. We had to develop our own marriage preparation plan, so we again turned to the step-by-step approach.
My daughter did go to counseling and, once in awhile, her fiancé was allowed to attend as a guest. They really liked the counselor, and she seemed to get along well with them; then, she left the practice. We tried other counselors, but it wasn’t the same.
I hoped my daughter wouldn’t lose sight of the fact the better person she is, the better mate she will be. So, my next request was that she live on her own for one full year, maintaining her individual activities in Special Olympics and work. By living on her own, I knew she would develop the skills to maintain her own home; feel confident about what she does and where she goes from her new home; and be able to make decisions about security, home repair and home maintenance. By keeping her individual interests, I hoped she would learn to be an individual first and a “wife” second.
My daughter and her fiancé are very different, with their own unique strengths and abilities. This reinforces the belief that “opposites attract.” I’m not sure anyone, including my daughter, can ever completely prepare for the emotional changes of being married. Even with counseling it is difficult to prepare for every situation, but it certainly helps to have the right tools and the confidence to use them.
My daughter has successfully lived on her own for 18 months. She and her fiancé have done everything we asked of them. They have their individual work and Special Olympics activities, they go to church every Sunday and Bible study every Saturday night. They have always been where they said they would be, when they said they would be there. Both of them knew how to ask for help if they need it. I was feeling very confident that we could move forward. That’s when things got more complicated.
Last week we learned that her fiancé’s parents are selling their home. For him to stay in his same activities and have the same ease to get to work, they wanted to discuss his moving in with my daughter. So, there would be a “trial run” of marriage. After much thought, I began to feel comfortable with the idea. Like any parent, I struggled with knowing when to allow children to make their own decisions, right or wrong, with the potential of success or failure versus stepping in and just saying no. The challenge for parents of a child with a disability is compounded by a few factors. 1) It may take longer for a child with a disability to be able to successfully make independent decisions, so the emancipation process takes longer. 2) Families (parents) will likely be involved indefinitely in the child’s life, which adds a uniquely challenging feature to a marriage of people with disabilities.
I have heard of so many parents having difficult struggles with their adult child’s roommate’s parents — both same and opposite sex roommates. Many of these struggles are because of different lifestyle expectations and goals. Roommates influence each other positively or negatively. Parents struggle with the negative influences. Roommates may have different eating habits, social interests, or expectations for cleanliness. It’s only a matter of time before these differences influence each roommate. Sometimes these differences cannot be worked out and the roommates must split up. When marriage is involved, it is even more complicated. I’m sure we’ll find ourselves openly discussing things that most couples don’t share with their parents. Fortunately, her fiancé’s parents and I are on the same page, prepared to have regular meetings to discuss how things are going and whether additional counseling may be needed for both of them. Everyone is receptive to this.
It is important to consider how marriage impacts federal benefits such as SSI or SSDI. Many people are surprised to learn that marriage may reduce the monthly benefit amount(s). Families need to understand, in advance of marriage or a change in living arrangements, what financial impact the change may have on public benefits.
In my daughter’s case, we discovered that living with an unrelated roommate would impact her eligibility for state-funded support services. My daughter has a waiver that pays for her “provider” services. Her fiancé drives his own car and has mild disabilities that do not meet eligibility requirements for services. Our initial inquiries brought to light the bad news that my daughter would lose her crucial supports if her fiancé moves in. I don’t know why having an unrelated roommate would eliminate my daughter’s benefits unless the expectation is of total dependence on that roommate. That would be disastrous for my daughter. She still needs to work on developing independent living skills with a professional — not a roommate. After further discussion and reevaluation, it was determined she could keep her supports.
At times like this, a parent looks to family and friends for support. My support from family and friends has been mixed. But the bottom line is I did not make this decision. I am trying to help my daughter achieve her decision; and that’s what we’ve have worked towards her whole life. Our goal now is to make sure we support her in making decisions that are in her best interest and that of her fiancé — and to understand when they are not.