(For Parents of Children with Developmental Disabilities)
Not all children with developmental disabilities grow up and get married or enter into long-term relationships. And not all couples with developmental disabilities have children. But if marriage, a long-term relationship, or having children sound like distinct possibilities for your older child, then you might want to read this article.
Good relationships and good parenting don’t just happen – they require a lot of work. Much of this work is the same for people both with and without developmental disabilities, but there are also unique aspects and challenges that only people with developmental disabilities face. And, as you have no doubt already figured out, the responsibility for preparing your child for these challenges will probably fall squarely on your shoulders.
We can help a bit, but we're just a sexuality website. Consequently, you'll have to turn to other sources for information on all of the other considerations that go along with being in a relationship or raising a child. For example, if your child gets married and moves into their own place, they'll have to learn all about finances, running a home, and cooking meals.
It may be scary to think of your child being in a relationship, but isn’t that what every parent wants? Here are some of the things you and your child will need to consider if you want your child to experience the fulfillment that comes from being in a committed, intimate relationship.
Is it legal for a person with a developmental disability to get married? You won't find the answer in our Constitution or in the Americans with Disabilities Act. That's because matters of marriage are handled on the state level, and different states address marriage laws differently. As a general rule, though, people with developmental disabilities have the same right to be married as anyone else. That right, however, can be taken away if a court determines that a person is incapable of entering into a marriage contract.
Is it legal for a person with a developmental disability to have children? Yes, but states have laws that can limit the parental rights of people with developmental disabilities. In thirty-two states, a parent's developmental disability can be one of the grounds for termination of parental rights. Although recent research has shown that parents with disabilities are not more likely to maltreat their children than parents without disabilities, studies have found very high rates of termination of the rights of parents with disabilities.
Both the Americans with Disabilities Act and the Rehabilitation Act prohibit state and local governments from discriminating against people with disabilities in their programs and services. However, one area that these anti-discrimination laws do not cover is child custody and child protection proceedings, and many parents with disabilities still face discrimination in these arenas.
To find out more about the laws on marriage and parental rights in your state, speak with someone at a local disability rights organization. They should also be able to tell you how marriage can affect an individual's social security status.
We think your child should be with someone they love.
It doesn’t matter if your child finds someone with a disability or without a disability. What does matter is that there is equality in your child’s relationship with their partner. And that’s where your responsibility lies – making sure that the person your child has chosen will treat your child right.
If your child chooses poorly, then you’ve got yourself a real predicament – trying to convince your child that they’ve fallen in love with the wrong person. Don’t do this alone – enlist the support of everyone else your child respects and trusts, and try to figure out as many ways as possible to get your point across. In the end, you just may have to take legal steps to prevent the marriage.
If your child chooses a good person, then take advantage of community and government resources that will allow them to live on their own – either in an assisted or unassisted living situation. Of course, you can also offer to have them live with you, but let them make the final decision.
If your older child is married and considering parenthood, then there’s probably one big question they’re desperate to know the answer to: “Will my child have the same disability as me?” The answer depends upon your child’s disability.
Some developmental disabilities are genetic – meaning that they are caused by abnormal genes – but not all genetic developmental disabilities are hereditary – meaning that the abnormal genes are inherited from one or both parents (who may or may not have the disability themselves). If a disability is not hereditary, then it cannot be passed down from parent to child. And even if a disability is hereditary, it doesn’t mean that a child will automatically inherit the disability. Let’s take a look at the most common genetic developmental disabilities to see which ones are hereditary:
- Most cases of Down syndrome are not inherited. More than 90 percent of cases of Down syndrome are caused by trisomy 21, a non-hereditary condition. Mosaic Down syndrome is also not inherited. Translocation Down syndrome is the only form of the disorder that can be passed down from parent to child. However, only about 4 percent of people with Down syndrome have translocation. And only about half of these cases are inherited (from one of the parents).
- Klinefelter syndrome is not inherited.
- Fragile X syndrome is inherited. A father can only pass the abnormal gene down to a daughter. A mother can pass the abnormal gene down to a daughter or son.
- An estimated 15-20% of cases of congenital hypothyroidism are inherited. There are two different patterns of inheritance – one which requires both parents to have the abnormal gene and one which requires only one parent to have the abnormal gene.
- In a small percentage of cases, Williams syndrome is inherited. It is inherited from one parent.
- Phenylketonuria is inherited. It must be inherited from both parents.
- In very rare cases, Prader-Willi syndrome is inherited. It is inherited from the father.
- Scientists don’t know exactly what causes autism spectrum disorders, though much evidence supports the idea that hereditary factors are one of the causes. Current evidence suggests that as many as 12 or more genes may be involved in autism to different degrees. Some genes may place a person at greater risk for autism, while other genes may cause specific symptoms or determine how severe those symptoms are. Research has also shown that environmental factors, such as viruses, may also play a role in autism. While some researchers are examining genes and environmental factors, other researchers are looking at possible neurological, infectious, metabolic, and immunologic factors that may be involved in autism. Because the disorder is so complex, and because no two people with autism are exactly alike, autism is probably the result of many causes.
Don't take our word for it. If your child or their partner has a hereditary disability, then they should consider genetic counseling before having a child.
Your child’s disability may also affect their ability to have children. Check with a genetics counselor or your child’s healthcare provider to see if fertility testing should be considered.
What Better Resources...
If your older child is seriously considering marriage or a long-term relationship, it may be helpful for them (and their partner) to talk with a couple in a similar situation. Finding such a couple may prove difficult (try asking at a community organization that works with people with developmental disabilities), but if you’re lucky enough to find a couple, they could be a great resource. Work with your child ahead of time to prepare a list of questions.
If your older child is considering parenthood, it may be helpful for them (and their partner) to talk with a parenting couple in a similar situation. Again, prepare your child ahead of time with a list of questions.
For more information, we suggest you start by reading chapter 11 ("Committed Partnerships, Marriage, and Parenthood") in Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven (click here to learn more about this book). Some of the information in this chapter is specific to people with Down Syndrome, but if you've got an older child with a different developmental disability who has expressed an interest in a long-term relationship or parenthood, then you'll still find plenty of useful information in this chapter.
For more help in talking with your older child about parenthood, check out lesson 21 ("Reproduction, Day 3: Parenthood") in
Special Education FLASH (Family Life and Sexual Health) from Public Health – Seattle & King County. This lesson was originally written for educators, but it can be easily adapted for use by parents. Click here to download a PDF version of the lesson.
Supporting Families When Parents Have Intellectual Disabilities from the North Dakota Center for Persons with Disabilities was originally written for providers, but it contains a wealth of information that parents should find useful too. Click here to download a PDF version of the manual.
1. Center for Advanced Studies in Child Welfare, University of Minnesota, www.cehd.umn.edu/ssw/cascw.
The National Institute of Child Health and Human Development (United States Department of Health and Human Services), www.nichd.nih.gov.
3. Genetics Home Reference (United States Department of Health and Human Services), www.ghr.nlm.nih.gov.
4. Mayo Clinic, www.mayoclinic.com.
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