For many years I worked at Durban and Coastal Mental Health Society as a Clinical Psychiatric Social Worker. Hanging in reception was a framed embroidered cloth that said: “God gives us what He knows we can manage” Perhaps that was the first seed planted into my current identity as an atheist. I simply could not see how a benign God could allow parents of intellectually /physically differently abled children to stoically accept that this was their lot in life. This is a lot to ask of a parent in a world where there is very little support , financially , practically and emotionally, a lot of stigma and silence around the many losses parents themselves experience. Most especially their sexual and relational losses.
My work as a Medico Legal Sexual Health Expert throws me right into the heart of making a difference for people traumatised by medical negligence, road accidents and personal family abuses. And in the last year my work has been centralised around assessing and making court recommendations for children born with Hypoxic Ischaemic Encephalopathy/Cerebral Palsy (CP) . Hypoxic Ischemic Encephalopathy (HIE) is a type of brain damage that occurs when an infant’s brain doesn’t receive enough oxygen and blood during the birthing process. Effects of HIE may include developmental delays, epilepsy, cognitive issues, motor skill development delays, and neurodevelopment delays. As of March 2016 claims against the health department from previous 5 years = R37 billion. The majority of these were claims from HIE families for negligence levied against hospitals and gynaecologists. That translates to many families being left to suddenly take care of intellectually and physically differently abled children .
Are you a parent who is raising an intellectually/physically differently abled child?
What has been the impact on your sexual life?
Describe the effect it has had on your intimate relationships?
Have you ever received any counselling /support for yourself /couple?
Have you raised your own sexuality /relationship/s with health care provider ?
What are your own primary concerns about your intimate life?
Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future. This core experience is marred and shattered irreversibly by disability. How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on? How can they help their child, their other children, themselves? A grieving process begins that lasts a life time. Feelings vacillate between anxiety, anger, denial, guilt, depression, regret and fear.
Lets consider what conditions are optimal for sexual functioning. Privacy, time , mental and physical presence , attraction to partner, focus , concentration, vulnerability, and permission – permission to be an adult, experience pleasure and joy- and physical health.
For parents, having a different abled child may increase stress, take a toll on mental and physical health, Its a struggle to find appropriate and affordable child care leaving you on duty 24/7. This pretty much takes the sexy out of sex. Years after birthing a differently abled child, my medico legal clients divorce, or have partners leave them soon after the child is born. They choose to remain single and sexless, distancing themselves from any intimacy that uses up their time and energy which are much needed resources to raise their children.
Existing studies indicate that having an infant with a serious health condition or health risk increases the likelihood that parents divorce or live apart; that the mother does not work outside of the home; and that the mother relies on public assistance. It also leads to a reduction in the father’s work hours. Optimally one receives validation from being engaged in the world through work or a passion that makes one feel life has purpose. That’s a sexy feeling. Removed from an external adult world and consumed by a child centric world diminishes self esteem and confidence. The desire to be sexual is simultaneously reduced.
Another study found that parents with disabled children have lower rates of social participation than parents without a disabled child and that they are less likely to have large families. The ongoing grieving process and practical necessities inhibits single people socialising so limiting their opportunities for sexual play and relationships.
All of these potential effects have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure.
This is the sexuality and intimacy cost of raising a differently abled child.
- Ongoing counselling to manage lifelong grieving process
- Couple therapy to avoid separation.
- Create a support network that allows you guilt free adult time out- alone and with partner/s
- Redefine sexuality – introduce vibrators into the relationship : they speed up the process , give you wonderful healthy orgasms and keep you sexually connected with your partner
- Use porn for when your arousal is down . Pump it up artificially . Your payoff is feeling alive sexually, alone or with a partner.
- Lubricant may be necessary to overcome dryness and prevent painful intercourse.
- As a single person , masturbation is soothing and reminds you that you are an adult sexual person
- Dress up ,wear nice underwear, go dancing, move your body out of trauma.