The Philippine Online Chronicles

Nang isilang ka sa mundong ito
laking tuwa ng magulang mo At ang kamay nila ang iyong ilaw
At ang nanay at tatay mo'y
Di malaman ang gagawin
Minamasdan pati pagtulog mo”

These are the opening lines to Freddie Aguilar’s classic song Anak. For almost all parents I know, this is the anthem that truly embodies their feelings about becoming a parent.

They have described becoming a parent as one of the most, if not THE most, meaningful and fulfilling experiences they’ve had in their lives. From the moment they find out they are expecting, the soon-to-be parents begin to go through all lengths to ensure the health and safety of their unborn.

Despite all efforts parents take to protect their children from harm, however, there are instances when they are powerless to defend them from disorders, disabilities and difficulties that can alter their lives completely. Autism is one of them.

No parent ever wishes to have a child with special needs. Ask any expecting parent what gender they want their baby to be and the answer is almost always the same: “kahit ano basta normal at healthy (it really wouldn’t matter, as long as the baby is normal and healthy)”. However, a growing number of parents are faced with the reality that theirs is not a typical child.

Adjusting to “special” parenthood

Becoming a parent and the transition to parenthood in itself is an increasingly difficult task. It places demands on every member of the family which can be both exciting and challenging. A gamut of emotions ranging from happiness to fear, disappointment and frustration are triggered as the stressors from this adjustment piles up.

However, when a child with special needs challenges a household, it carries with it concerns and issues, not just for the child who is diagnosed with a disorder, but for the family he or she is born into.

In some cases, the diagnosis of special needs does not come immediately. Unlike disorders such as Down Syndrome or congenital abnormalities that are detected before or immediately after birth, developmental disorders such Autism Spectrum Disorder or ASD are typically detected around age two and onwards. For children with other special needs such as learning disabilities, Attention Deficit Hyperactivity Disorder (ADHD) or Oppositional Defiant Disorder (ODD), diagnosis may come even later.

As such, parents of children diagnosed with these concerns may feel shocked, confused and distressed upon learning their child’s special needs. In the book Educating Exceptional Children by Kirk, Gallagher and Anastasiow, it was said that parents go through what is described as a symbolic death of the child that was-to-be. Here they go through the motions of losing a child to the disease or disability. Studies further show that parents commonly go through a grieving process upon learning about the diagnosis of their child’s special needs.

Autism Society of the Philippines’ (ASP) National President, Mary Grace L. Adviento shared in the ASP blog site that when she received her son’s diagnosis, she found herself in “a twilight zone”. She further went on to share her process of grief and recovery:

“The feeling is like dreaming while awake. I felt numbed, I was shocked, in denial, angry and depressed all at the same time. The dreams I had for my son, going to Ateneo de Manila University or becoming a congressman, were thrown out of the window. However, I discovered that the more I share my experiences to others, acceptance of Adrian became a lot easier and my own recovery, quicker”.

Stages of grief

In 1969, Elisabeth Kübler Ross identified the five stages of grief in her book On Death and Dying. Also known as the Kübler Ross model , it outlined a distinct process by which people respond to grief in the face of tragedy, terminal illness and loss. In the same way, parents of children with special needs grieve for the loss of their child’s normalcy and the life they had initially known. In some regard, they mourn the loss of what could have been and the challenges and uncertainties that comes with the diagnosis of autism.

Grief is a process. For some, they are able to go through the stages quicker than others while others may take more time to overcome a particular stage and move on to the next. These stages are accompanied by questions, feelings and concerns that must be addressed in order to move on to the next.

These stages are as follows:

· Denial and Isolation. This is typically the initial response from most parents. In fact, in this stage they go through the process of getting a second opinion to prove that the diagnosis is wrong and that there is really nothing wrong with the situation they are in. They also feel isolated and alone at this point in their grieving process. On the other hand, while some parents may react with denial upon the diagnosis of ASD or some other disorder, some will feel a great sense of relief as this “defines” their situation better.

This is exactly how Robin felt when she found out her daughter had autism. Despite having a degree in psychology and having attended early intervention playgroups, she overlooked symptoms that her child was manifesting. As she put it, “I mourned my denial, yet felt relief that the diagnosis may make it a little easier to get her the help she needs”.

· Anger and Guilt. Part of the process includes a period of anger and hostility which may be directed towards oneself or others. During this period, couples may find themselves blaming each other for what had happened to their children. Some may even feel an anger towards God and ask “why my child?”

· Bargaining. The next stage of the grieving process exploring quick solutions which may include bargaining with God about giving Him something in exchange for their child becoming well again. Leira, mom of a 9-year old boy with autism, asked many “if only” questions at first but now is able to see how autism has brought their family closer together.

· Frustration and Depression. An especially difficult time in the grieving process is being confronted with the feeling that there is nothing he or she can do as a parent to help their child. They feel an intense sense of helplessness and heartache, and for some, they lose hope.

· Acceptance. The last stage of the process allows parents to become more realistic about their situation and to once again feel confident in themselves as parents. They also begin to make more concrete steps towards providing for interventions and treatments for their child. In his Twitter page, Senatorial bet Adel Tamano tweets about how proud he is of his son who, despite the living with autism, is working hard at beating the odds and living a full life.

Now what?

After going through the different stages of grief upon their child’s diagnosis, parents are now faced with creating a future for their child. Studies show that parenting a special needs child can cause significant marital distress and conflict which can lead to the dissolution of a marriage.

Actress Holly Robinson Peete shared that when her son was diagnosed with autism at age 3, she and her husband went through rough patches in their relationship as they struggled to understand and make sense of their situation. As such, it is important to not only address the needs of the child but also the family. To be fair, not all cases of parenting a child with special needs cause only negative effects on the family. For some, this can prove to be a factor in strengthening the family unit as they go through the process together.

An important step to effectively coping with the changes and stresses that ASD brings is educating one’s self about how to help your child. In a blog about parenting an autistic child, they found that being patient and consistently involved in their son’s process helped make significant strides in his progress. It is also important to work closely in collaboration with therapists and other specialists in order to come up with a treatment plan that is especially designed for the child, taking into consideration the differences each child with ASD experiences.

Going online for support

Many parents of children with autism find comfort and relief through the Internet as it is a vast resource for support and understanding. Through this online support system, they are able to find other families who are going through the same things that they are going through. There are countless autism stories which become a means for exchanging ideas regarding interventions and programs that have worked for individual families. Other parents turn to blogging and interacting in various autism forums as useful tools in managing their stress and dealing with issues they may be going through, such as that feeling of isolation and being alone in the battle.

While various forums and online discussions can be of help, it is important for a family of a child with special needs to seek the help of licensed or qualified professionals such as physical, occupational or speech therapists, psychologists, developmental pediatricians, psychiatrists and the like.

Coping with autism and other disabilities or developmental concerns is a life-long process. A major concern for most parents with children with ASD is what will happen to their child when they are gone, especially for those who are at the severe end of the spectrum. Issues such as housing, self-care, and employment are also concerns they will face down the line. On a more immediate level, a big issue that families of children with special needs face is the financial toll entailed in providing interventions and therapies that their child may need, which can go up to over P 100,000 in just one year depending on the number of services they would need.

When asked about the biggest difficulty she faces in parenting her child with special needs, Leira shared that, besides the ignorance people have about autism here in the Philippines, it is the lack of government support for individuals and their families who are living with autism. While laws may exist, the Philippines lacks the resources to provide for the long-term needs of children with autism, which escalates the fears of what will happen to their child with autism when the parents die.

The diagnosis of autism, or any disorder or disability for that matter, can feel like a life sentence at the moment of learning about it. However, it is important for parents to remember that despite this change that they are going through, there is hope.

Photos: “Hold on tight” by S Raj, c/o Flickr. Some Rights Reserved / “mother and child” by roberta, c/o Flickr. Some Rights Reserved / “Sunburn” by Rhea Monique, c/o Flickr. Some Rights Reserved.