Final Straits Times Article

GRANDPARENTING A CHILD WITH SPECIAL NEEDS

© CHOO Kah Ying

In this day and age characterised by families with two working parents, grandparents all over the world are serving as primary caregivers of their grandchildren. With their commitment to their grandchildren, along with their wealth of parenting experiences, grandparents are often ideal candidates for this important task.

However, raising children with special needs can often prove to be an overwhelming endeavour that can be overly taxing and demanding for grandparents. Whether it be the children’s inability to communicate, their display of socially inappropriate behaviours, or their physical handicaps, children with special needs often require caregivers to suspend their conventional notions of raising children. Essentially, grandparents, in spite of their years of experience in parenthood, can be reduced to novices grappling with moments of utter confusion or incomprehension. They are bewildered at how their age-old strategies and methods that had worked so well with their children are rendered irrelevant or ineffective with their grandchildren with special needs.

During the course of my journey of raising an autistic child, I have encountered grandparents with differing perceptions of their grandchildren with special needs. On one end of the “grandparenting spectrum” is the ideal grandparent who is exemplified by Grandmother Carol -- the primary caregiver of Bryan, her six-year-old autistic grandson. With a twinkle in her eye and a smile of grandmotherly pride, she would tell us about her activities with Bryan.

“Bryan did not say any words until he was four, or play with his cousins. He would stay with me when I was baking cookies or some other dishes – my favourite pastime. Bryan would help me with kneading the dough – a good sensory activity. It would be a big mess, but he was very interested. These days, he walks around the kitchen, naming all the items in the kitchen and spelling out words on the containers: F – L - O – U – R.”

I remember sitting there in complete awe of this seventy-year-old grantparent who was ferrying her autistic grandchild to different therapies three days of the week and interacting with him at home. She was seemingly undaunted by the challenges of her grandchild’s deficits and difficulties. Because of her inclusion of Bryan into her cooking activities, Grandmother Carol helped to draw him out of his autistic world.

On the other end of the spectrum are the grandparents who want to have nothing to do with their grandchildren with special needs. Some parents lament the fact that their parents dote on the typical grandchildren of their siblings, while excluding their children with special needs from family gatherings. Although they are willing to babysit their typical grandchildren, these grandparents will not extend the same offer to their grandchildren with special needs.

Most grandparents, I believe, occupy the middle zone of the spectrum. They are enthusiastic and passionate about raising their grandchildren with special needs. However, they lack the knowledge of appropriate strategies to know how to raise these children successfully. Governed primarily by their previous parenting experiences and/or conventional notions of parenting, these grandparents sometimes do more harm than good inadvertently.

For instance, while holding the hand of a child when walking in public is a common practice, in the case of a non-verbal autistic child, a grandparent’s insistence on holding this child’s hand may be construed as an act of restraint by the latter. The child may react by pinching or even biting the hand of the grandparent to get him or her to let go.

Similarly, grandparents trying to teach their grandchildren who have learning difficulties such as hyperactivity and the inability to attend, due to developmental disorders, may not realize that the conventional worksheets or teaching approaches for typical children are inappropriate. Forcing them to learn in this fashion will not only be ineffective, but also be stressful for both the grandparents and the children.

In making these observations, it is not my intention to dissuade grandparents from caring for children with special needs. Believe me, Grandmother Carol did not start out on this journey with the innate wisdom of knowing how to raise Bryan. As with us parents, Grandmother Carol gained the knowledge and information from the therapists in her dialogues with them at the end of the sessions. The knowledge and information she accumulated enabled her to better understand Bryan and interact with him effectively.

There is no question that raising grandchildren with special needs can be extremely difficult for grandparents who have already invested tremendous effort in raising their own children to adulthood. However, for those of you who are still going strong (and I know of many grandparents who are), I hope that you will not be put off by the fact that you may have to set aside some of your previous knowledge and experience to learn new caregiving strategies and approaches. As with Grandmother Carol, you can also become an effective and successful grandparent of children with special needs and serve as the first line of support for your own child.

Choo Kah Ying is a parent trainer. Kchoo7@gmail.com

INDIVIDUALIZED CONSULTATION SERVICES

The individualized consultation services are tailored for novice parents who need additional support, apart from the parent training programme and/or those who are too busy to design an individualized learning programme. Essentially, while the parent training programme may have given parents information and insights, some parents may still have difficulties with translating these ideas and insights into actual practice, especially with regard to their own children. Thus, these consultation services are individualized to your child. Hopefully, the two/four sessions (depending on your needs) will provide you with a foundation to learn how to do the programmes and therapies successfully.

For parents who need either a learning programme and/or additional training in various therapeutic approaches, the individualized consultation and assessment will be needed. This assessment is needed to let me know your specific situation and your child.

1. My individualized consultation and assessment includes:
a) a parental interview -- two hours (held at my place) in which you will provide me with any professional reports and a completed template of the profile of your child -- to the best of your ability.

b) observation and interaction with your child at your home setting -- two hours -- this is when I get to see what you are doing with your child and what the child is able and willing to do.

The (1)a and (1)b will be a total of $75.00.

For parents who are interested in a learning package, it would be another $75.00. This is when I return home and prepare the actual package for you. This package should last you about a month, by which case, you should be inspired enough to do it on your own.

For those who require help to do the Picture Exchange Communication System (PECS), floortime and sensory integration strategies, two two-hour sessions will be necessary:

a) Bodywork (sensory and massages) and floortime for the first session;

b) PECS for the second session.

Each of these two-hour sessions will be $60.00 each.

After this initial training session, I hope to have launched you on your way. To minimize your costs, I do not want to suggest once a week sessions. However, if you want to consult with me again at a later stage and require me to go to your place, you can check in with me for another $60 session. Otherwise, minor issues can be addressed via emails to me: kchoo7@gmail.com. Or I can be reached at 8163-4509.

Moving Beyond the Grief to Love Your Child with Special Needs

Moving Beyond the Grief to Love Your Child with Special Needs

© CHOO Kah Ying
There are no words to adequately capture the sense of devastation that parents experience when they first learn that their child has special needs. After returning home from the clinic on that life-changing day when I learned of my son’s diagnosis of autism, I looked at my son as though he were an impostor who had usurped the place of my real son. In my shock and grief, I distanced myself from him and thought: “Who is this child? I don’t even know who he is.”

However, that day, I was fortunate to have a good friend who reminded me of a vital truth that had eluded me: “You know, Sebastien is still the same child.” His simple statement woke me up. He was right: Sebastien was the same child, before and after the diagnosis. What had changed was my perspective of him as I was compelled to embark on a journey for which I was not prepared.

Thanks to my friend, I was able to begin the important process of coming to terms with my grief, instead of venting my feelings of hurt at my son. I realized then that my grief did not give me the right to view my son harshly. He was an innocent in my struggle with my own feelings of shock, anger and sadness.

According to a publication by the Washington chapter of the Autism Society of America, this recognition that the parents’ grief should be separated from the child represents the “idealized, final phase” of the cycle of coping with loss and change –“maintenance/resolution.” I was lucky to have arrived at this point early in my confrontation with autism because of my friend’s gentle, but firm, admonition.

At the same time, I need to highlight the fact that the coping process is a cycle, not a linear progression. Essentially, parents will experience any of the following emotions in the circular process of grieving -- shock, denial, guilt, anger, sadness, objectivity and maintenance/resolution –at different phases of our journey. So I am not putting forth the fantasy notion that the grief will just fade away with time. Rather, I am asking us parents to manage our grief in a way that will not undermine our relationships with our children with special needs.

In an article targeted at parents of autistic children, “Don’t Mourn for Us,” Jim Sinclair, an autistic man, eloquently articulates the impact of parental grieving on the well-being of children with special needs. According to Mr. Sinclair, parents grieve because their “fantasized normal child” did not come into being. The clinging to the fantasized child impedes us parents from forming authentic and fulfilling relationships with our children. As Mr. Sinclair put it: “Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.”

This attitude is damaging because it becomes manifested in our judgmental perspective of our children, our impatience towards them and our embarrassment at eye-catching behaviours in the public realm. Assuming that our children are oblivious to our perceptions, we inadvertently hurt them with our judgments because we are hurting inside.

There is no question that managing our grief can be extremely daunting in the long term. In my experience, I have coped by watching my son cope with the difficulties of functioning in a world that does not make many accommodations for him day in and day out.

Over time, my sense of loss of a typical normal child has gradually been replaced by my growing admiration and pride for this autistic child who is a fighter, in every sense of the word. I recognize that his presence in my life has challenged me to be a better person. Ironically, even though we parents often feel crushed by the burden of helping our children to live in mainstream society, we can learn a lot from our children about what it means to truly live. Our children are a blessing in our lives, not a blight.

However, we will never grasp this ironic fact, if we are unwilling to suspend our desire for the norm in order to see our children as the unique individuals that they are and cherish them in a way that they deserve. Even more importantly, we need to ask ourselves: How can our children stand a chance in mainstream society, if their own parents will not embrace them and fight for them? As Mr. Sinclair articulated it so eloquently to parents: “The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?”

Grief colours the nature of our relationships with our children. If we parents are to raise our children with special needs and educate them appropriately, we must first learn how to manage our grief. So to the parents of children with special needs, please do not let your grieving “for your fantasized normal child” get in the way of loving the child who is right before you.

Choo Kah Ying is a parent of an autistic child and a provider of training programmes for parents of autistic children.
kchoo7@gmail.com