The support of family for parents with disability

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Being a mother behind a mother with intellectual disability

Margaret Spencer Ramp Up 23 Apr 2013

Black and white close of up baby feet of twins
Family support for parents with disability can be invaluable. Credit: VickyLeon (iStockphoto)

I walked into my office to find the phone flashing with a message. Beep: « Hi, it’s Amanda. I have good news, double good news. Ring me. »

Amanda is my goddaughter. At six years of age, Amanda came into emergency foster care with me. What was to be a one-night care arrangement extended throughout Amanda’s childhood.

Amanda has intellectual disability. She went through school in an IM class, which means an intensive, individualised educational program within a regular school setting.

After leaving foster care, Amanda moved into her own flat and took a part-time job. The one thing I couldn’t find for her, and something she wanted, was a boyfriend. Before too long, Amanda believed she was in love but the relationship was complicated and unfortunately she soon lost her flat, savings and job. She also reconnected with her birth family and moved in with them.

I rang Amanda back with trepidation. « Hi Amanda, I got your message. » Before I could say anything else, she excitedly announced, « Guess what? I am pregnant and I am having twins! »

I remember saying, « Are you sure you’re pregnant? » and « Are you sure you’re having twins? » Like ‘doubting Thomas’ I demanded she read the ultrasound report to me. As soon as she spelt out the word « m-o-n-o-z-y-g-o-t-i-c » I knew she was not making it up!

For 10 years I had specialised in the area of parenting with intellectual disability. I championed the rights of people with intellectual disability to parent. I ran workshops for family support workers on how to help families in which one or both parents have intellectual disability. I was a few years into my goddamn PhD on the topic. I, of all people, should have been able to embrace this news!

As I held the phone, not knowing how to respond, the words of Professor Gwynnyth Llewellyn – a world leader on this topic and my mentor – came to mind, « For people with intellectual disability, becoming a parent is often not greeted with the same level of excitement that others experience. Rather, family, friends and service providers may be ambivalent if not actively discouraging of their decision to have a child. »

I had cited these words in workshops over the years. Now they were coming back to bite me. As Amanda’s godmother – the only constant and supportive adult throughout her life – it was now not so easy to be sanctimonious. I admit I was filled with dread and confusion, and as such felt a heel when my first words were « Oh…. (silence) …Oh. »

As evidence to the current enquiry into the forced and coerced sterilisation of people with disabilities highlights, for many parents of a child with intellectual disability the questions of sexual relationships, pregnancy and parenthood is a bridge too far. Over the past nine years I have reflected on my reaction to this « good news…double good news » phone call and asked myself, « Was it because of Amanda’s intellectual disability that I didn’t respond with the same excitement or joy if it had been my non-disabled sister or friend ringing to share such news? »

Maybe I am kidding myself, but I like to believe what worried me most was that Amanda had become pregnant in circumstances that I believed left her ill-prepared for motherhood. Her relationship was rocky; her living situation was arguably insecure; she was young, having just turned 20. I also knew that she would likely come under the scrutiny of Child Protection authorities. I had witnessed firsthand the pain and struggle mothers like Amanda face; the assumptions and concerns she would have to disprove, the obstacles put in her way and the low threshold for error. Because of all this, I was scared for her.

Amanda gave birth to beautiful identical twin girls. Her relationship with the twins’ father had broken down by then and Amanda was set to raise the girls on her own. Child Protection authorities came to the hospital within days of the birth and told Amanda she could not take the twins back to live with her birth family.

Amanda rang me, scared. I went to the hospital and saw her with the twins. She was totally focused on these tiny mites. What else could I do? Amanda needed a family to support her just as much as she did when she was six years old. So just as I did then, I offered my help and that’s what I have done for the past nine years.

So what does that help entail? Put simply, my role has been to be the mother behind the mother – something Nordic researchers identified as the crucial element for mothers with intellectual disability keeping custody of their children. In many respects, the help I have given has been no more than any actively involved grandmother offers her daughter and granddaughters. I provided an extra pair of hands when the twins were little. These days I will take one girl when the other is sick or provide respite when mum needs a night off. I am at the end of the phone to provide practical advice and emotional support. I play the doting grandmother at school assemblies. Or sometimes, I just arrive with a meal when I know it has been one of those weeks.

Many mothers with intellectual disability are often not given the chance to experience what Amanda has experienced. Research shows that 40-60% of parents with intellectual disability will have their children taken into care based on pessimistic assumptions about what such a parent has to offer a child.

By and large, the value of family behind the family is not seriously appreciated by the formal service system. Help for vulnerable families is usually limited to parent education and therapeutic intervention. More thinking needs to be done to acknowledge and foster the role of families supporting families.

Nine years on, I can truly say that Amanda’s pronouncement was true: the twins have been good news…in fact, double good news! Amanda’s life, and certainly my life, is all the richer because of the family we have created.

You can read Amanda’s story here.

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