In this article, I’m speaking from the heart and from experience, rest assured that this sharing is backed by scientific studies, practicalities, guaranteed tried-and-proven supportive ways that could, I believe, help and educate the family, relatives, friends, teachers, all support-service providers involved in the general welfare of every CSN, and all those parents with children newly-diagnosed with a disorder or disability. Let this serve as ADVOCACY tips from someone who’s been-there, done-that, first-hand survivor of the ordeal of being handed a situation no one can ever be prepared for, that is having a child with special needs. Some of my sharings here are inspired from the teachings of Dr. Edilberto Dizon.
Accept reality.
After the diagnosis, how are you coping? Get up. Move on. It is time you confront your emotional crisis and come to terms with reality. Yes, it is not easy to accept a child with disability. You will most likely go through the stages of anger and guilt, denial, compromise and then depression before acceptance becomes possible. The feelings and emotional reactions you will go through need to be recognized and confronted the earliest possible. Not much can be achieved without fully accepting your child as he is. Prolonging the psychological struggles becomes, in the end, difficult for you, your child, your family and all others involved in your child’s welfare.
Educate yourself.
Learn everything you need to know about your child’s condition. However, don’t busy yourself too much on dwelling on its causes that you end up blaming yourself for your child’s disability and that you miss out on getting immediate intervention and treatment for your child.
Seek professional help.
Consult with the right people who can provide helpful information about your child’s condition and appropriate intervention for him. Seek professional help. There are trained and qualified service professionals who can assist you plan and implement intervention in collaboration with other service-providers. These people will be your partners in setting and achieving intervention goals for your child.
Prepare yourself for your child.
Understanding and loving your child unconditionally and being genuinely concerned about his welfare are vital conditions that will enable your child to grow. Commitment and consistency, alongside concrete actions in helping your child also relate positively to the employment of such fundamental conditions.
Know your child’s strengths, limitations and potentials.
Record his developmental milestones. The best way to know and understand your child, to determine his lags, and to appreciate his progress is to keep close track of his development. And to do this, will require your active presence and involvement that will enable you to look ahead and plan ahead based on his present developmental levels. Don’t aim for goals that are impossible and beyond his capacity.
Join a group.
You are not alone. There are others wearing your shoes. Join a group of parents who, like you, have special children. Interactions and exchanges of ideas, feelings and concerns with them provide both needed emotional support and helpful inputs on the education and rearing of your child.
Advocacy for special children is reinforced if parents commit themselves and work together for common objectives and causes.
Keep your family involved.
Involve the family (Ate, Kuya, Lolo, Lola, Tito, Tita, cousins, and even the yaya) in planning and implementing home intervention, in consultation with teachers and other professionals. A concerned parent recognizes the importance of family members especially the siblings in rendering intervention for their special brother/sister. Thus, the parent should involve each member/sibling in a particular task (examples: tutoring, teaching him house chores, making sure his meds are taken, taking him to school/rehab center/hospital, etc.) and coordinates the effort of all family members in the best interest of the special one.
Find appropriate intervention programs.
A SPED diagnostician, occupational therapist, speech therapist, physical therapist, developmental paediatrician, behaviorist can help you decide on this. Based on an educational, developmental, or behavioral assessment of your child, the experts could determine the appropriate and responsive programs for your child. They can decide and/or give advice on your child’s placement in consideration with his age and functioning level, the availability of the program facility and its proximity to your home, financial capability, among others.
Collaborate and coordinate.
Work closely with your child’s service providers (teachers, therapists, doctors and other caregivers) in order that the consistency of approach and follow-up of progress are achieved. Periodic consultations and conferences with these people for suggestions and advice; school assistance; teaching and curriculum planning and parent education; home programs; participation in school activities are some types of involvement you can do.
Know your child’s rights.
In the Philippines, Republic Act No. 7277 (Magna Carta for Disabled Persons and Its Implementing Rules and Regulations) mandates that persons with disabilities must be provided with a holistic intervention including the vocational component based on a comprehensive needs assessment. The Act provides for the rehabilitation, self-development and self-reliance of PWDs and their integration into mainstream society.
The rights and privileges for Filipino disabled persons include employment, education, health and social services, telecommunications, accessibility, political and civil rights, as well as housing programs, tax incentives and exemptions, and protection against discrimination.
Find the right school for your child.
Visit your school prospect. Try to interview teachers and talk to parents who have their kids enrolled there. There is no way to make a sound decision about your child’s education unless you do that. This is important. Brochures and web sites may be too flowery. Simple phone calls will not tell you if the school could really nurture your child and provide him with the help and guidance he needs. It is important that you check these out: the teacher-to-child ratio, available SPED programs, protocol for misbehaving students, openness to parents’ suggestions, and impartial inclusion of the CSN in school activities/programs.
Create a life outside of your child’s disability (and don’t feel guilty about it!)
Do things that make you feel good and renewed. Take a few good deep breaths. How do you do that? Remember when he was just a baby and you watched him sleep with his belly moving up and down? Do just that and breathe from your abdomen.
Read the newspaper, watch a movie, and eat leisurely taking the time to smell, taste and enjoy your food.
Take a walk; appreciate nature; talk with friends.
Find your humour in the midst of everyday stress. Laugh!
Trust in the Lord.
Draw your strength and inspiration through prayers, of course alongside concrete actions. More than anything else, seek His Divine Intervention and Providence that will empower you to move on and strengthen your commitment. Together with good intentions of well-meaning people, it will also enlighten you on how specific and concrete actions can be pursued in the best interest of your child.
Your child loves you. Believe that.
If you have been your child’s advocate right from the start, and you have loved him and showered him with as much affection as he will allow and accept, you can be assured that, somehow, he realizes you love him. He may not understand the complexity and depth of your love, but he can surely recognize that you are the adult who is always by his side, rooting for him and taking him to all the helpful doctors and therapists he sees. He knows that you are the one who’s there when he needs guidance, who’s willing to lend a hand when he seems confused or angry or overwhelmed, and who applauds his victories, large or small. Love always has a way of cutting through even the cloudiest of emotional journeys. It could somehow find its destination over and over again. Love your child and trust that he gets the message. He may not be able to reciprocate the traditional way, but you are making a difference in his life. Even if he may not be able to confirm this to you at the moment, he grasps this on a very basic level.
