Advocating for your Child with Special Needs

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.

An Avid Fan of Grandin

I watched these four videos of famous people with unique abilities. Each one greatly held my interest. 

-Jonnel Enorme, a world-class skater, born with cerebral palsy and other disabilities, won 3 gold medals, 62 silvers, and 26 bronzes in ice-skating competitions all over the world.

-Roselle Ambubuyog, visually-impaired by accident at age 6 due to a side effect of an over-the-counter drug that her doctor prescribed. She graduated as Summa Cum Laude in Ateneo de Manila University. BS Mathematics!

-Christine Ha, a blind cook, the first ever blind contestant and season 3 winner of the competitive amateur cooking U.S. television show, “MasterChef”, recipient of the 2014 Helen Keller Personal Achievement Award from the American Foundation for the Blind, now an author of several cookbooks, co-host on the Canadian cooking show, “Four Senses”, and a judge on “MasterChef” Vietnam. 

But the one that really captivated me was Temple Grandin’s The world needs all kinds of minds. I have been a fan of Grandin ever since my son was diagnosed with autism in 2005. Miggy (my son) was only 2yrs/9months then. (Now he is 13.) I immersed myself in everything about autism. Grandin was well talked about and adored in my circle of “special parents”.

Temple Grandin was diagnosed with autism as a child. In the video, she talks about how her mind works — sharing her ability to "think in pictures," which helps her solve problems that those with neurotypical intellect might fail to perceive. She makes a point that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of “smart nerdy kids”.

The visual thinkers are those who need to "see" things so as to understand them. They are more likely to draw a picture or build an object when trying to work out a problem. Grandin is a visual thinker, she has a photographic memory. Visual thinkers, according to her, can do geometry and trigonometry, but not algebra because there is no way to visualize it.

The pattern thinkers are those whose thoughts are in patterns rather than photo-realistic pictures. They are good at music and math — excellent at calendar calculations, speedy mathematical calculations, map and geography geniuses.

The verbal thinkers or word minds are those who like words and speech. They possess a huge memory for word facts. They love to make lists and will often memorize things such as train timetables & routes, stories in alphabetical order and even mundane things.

This talk by Grandin will make us wonder: What kind of a thinker am I? Although we are not on the spectrum, somehow we try to find an association to Grandin’s theory of the different kinds of thinkers.

With my 13-yr-old son being on the spectrum, I should have figured out by now his preferred learning types that could enable me as both a mom and a teacher to better address his academic needs. He is a visual thinker. He learns quickly when aided with pictures and videos, and lots of repetitions.

Asked what Grandin was most passionate about, to this she answered: “I get satisfaction out of seeing stuff that makes real change in the real world. We need a lot more of that and a lot less abstract stuff.”

Other quotes by Grandin found in her other videos and speeches that I find amazing, interesting, motivating, informative, and humbling are:

-        “Let's get into talking about how autism is similar animal behavior. The thing is I don't think in a language, and animals don't think in a language. It's sensory based thinking, thinking in pictures, thinking in smells, thinking in touches. It's putting these sensory based memories into categories.”

-        “A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.”

-        “Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don't want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn't have science or art. All you would have is a bunch of social 'yak yaks.'”

-        “When I was younger, I was looking for this magic meaning of life.”

-        “There needs to be a lot more emphasis on what a child can do instead of what he cannot do.”

-        “I don’t want my thoughts to die with me, I want to have done something. I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution - know that my life has meaning.” 

-        “Animals make us Human.” 

-        “Different, not less.”

Just now, while doing this paper, I downloaded her movie “Temple Grandin” portrayed by actress Claire Danes, which I hope that I will be able to force my husband to watch with me someday when he's free. A review by Danes herself says:  " I don't think I have ever been as inspired by any character that I have played. I was deeply moved by Temple's courage and her resourcefulness. She is really pioneering in both the world of autism and animal rights. She has encouraged an incredibly positive change in the world." 

Tantrums and Meltdowns

What works best with a child that has tantrums? 

I have witnessed these several times in my years of experience with autism. Meltdowns are common. I’ve seen a mild tantrum escalate into full-blown meltdowns. Truly frustrating, exhausting, and almost near surrender. If you are a parent of a child with autism, you know exactly what I mean.

Tantrums in children with ASD (autism spectrum disorder) can be much more dramatic than those of typical children because they happen more often and are frequently accompanied by SIBs (self-injurious behaviours), such as head banging, chest hitting, excessive scratching to the point of bleeding.

Patience. Don’t panic. Don’t overreact. Ignore. Keep your cool.

Well, it’s easier said than done. But when you are caught in that situation, it’s easier to yell, just let out with your own outburst and walk out.

Raising your voice will only frighten your child and will escalate his tantrum. Try to remain calm and speak with a quiet and firm voice. Use a few words as possible: “No!” or “Stop!” If his tantrum continues and may hurt himself or others, remove him from the room or move furniture away.

After a tantrum has subsided, try to figure out what has caused it.  — Could be sensory issues from the environment, such as noisy crowded room, or over-stimulating lights or sounds. Try to avoid these situations for your child or at least prepare him ahead for the new setting.

If you know your child, you’ll see and be able to predict when a meltdown is coming and you could avoid it. His facial expressions, non-cooperation, strange noises and murmurs, fidgety movements, and intense stimming behaviors will tell you that a tantrum is about to happen.

But when it’s there and you are unprepared, here’s an effective trick: interrupt and redirect. Shift his focus away from the tantrum and focus on something else, like doing a puzzle, coloring, or lego-building. Make an effort to pretend that the tantrum is not happening, and talk to your child animatedly about other things. Difficult at first, yes. But in time you’ll both get the hang of it.

Behavior Management For Children with Behavioral Problems

Let me share with you this writing that I submitted (Feb. 25, 2016) to our UP SPED teacher in one of the many assignments (3-5 times per week) she gave us, not to mention the weekly discussions we had to participate in as part of our CCSN course requirement. 

What behavior management technique works for a child with behavior problems? 

There are several factors that may cause children to misbehave. Misbehaviors could be a result of the child’s emotional status, socio-economic standing, or could be from a medical condition or disability. The disability, however, may not always provide a reasonable excuse for improper behaviors. Whatever the behavior, it should be contained and managed for the best welfare of the child. Behavior management entails setting concrete boundaries to control the behavior, reduce the anxiety, prevent disruptions, provide a feeling of emotional security for the child, especially for behaviors that have a tendency to escalate into physical aggression — hurting others and self-injury. We (teachers, parents, caregivers) need to establish very clear and precise rules concerning what we expect and desire the child should do and how this child should act/behave when a stressful situation occurs. Remember though that rules have to be founded on what is doable and appropriate for the child, particularly those with disability or special needs.

First step towards effective behavior management would be to identify the reason for the misbehavior. And from there, we could try and fit a solution. It is also important that we first ask ourselves: Which came first? — the behavior or some frustrating or aversive circumstance that could have caused it? We have to understand why challenging behaviour happens and what purposes they serve. It could be to seek attention; could be from communication difficulties (inability to convey messages, needs or wants because of the child’s deficit in understanding or inability to use language); or could be from environmental factors that cause sensory issues to the child.

In the course material, Behavior Management of Children with Special Education Needs in the Regular Classroom, effective techniques used are buddy system, socialization opportunities, teaching appropriate social responses and behaviors, re-directing the child’s focus, establishing routines, clear and simple class rules, good class schedule, well-prepared lessons, learning contracts, motivating classrooms, and pull-outs for students with excessively disruptive and violent behaviors.

In this assignment, I would like to specifically tackle on CLASS RULES.

A clear and simple class rule could be: Good behaviour gets a reward (the use of positive reinforcement), and bad behaviour gets a consequence (the use of consequence).  

The Use of Reinforcements:

Reinforcement is an incentive which follows a behavior and is reliant upon such behavior. It increases or decreases the likelihood of repetition of a behavior.

First, catch the child being good. How is that possible? He is always misbehaving!

Observe the child carefully and maybe we will be surprised to find out that he is actually behaving most of the time but we just failed to notice because we expected negatively on him. Ignore inappropriate behaviour and pay attention to good behaviour. Praise or reward him for the behaviour.

Positive Reinforcement

Positive reinforcement can encourage the possibility of an agreeable or disagreeable behavior. For instance, if a student finds that whining could get attention, the attention provides positive reinforcement that raises the chance that the student will prolong the whining behavior.

Reinforcement could be positive or negative reinforcement.

Reinforce positive behavior through the use of social reinforcers or expressions of appreciation and praise. Remarks such as "Good job," "I can tell you are working really hard," "You're nice", written approval "Super", and approval expressions such as nodding one’s head, smiling, clapping, and a pat on the child’s back are all really helpful reinforcers.

Activity reinforcers are also very useful and constructive for students. Giving students the chance to take part in chosen activities, for example games or computer time, is especially influential, particularly if the reinforcement permits selecting a classmate to participate with in the activity. This is a social reinforcement from the partner.

Tangible reinforcers are effective too. These include food, toys, balloons, stickers, and awards. However, food and toys must be used sensibly. If a student has problems with weight, parents may disallow the use of food as reinforcement. Toys, on the other hand, might make classmates jealous. Rewards and awards may be in the form of certificates, an exhibition of work, and written commendations on the student’s progress to be sent home to parents.

Token reinforcement entails awarding points or tokens for appropriate behavior. In itself, this reinforcer may have only a slight worth, however this could be swapped for something valuable or important to the student.

Negative Reinforcement       

Negative reinforcement is frequently confused with punishment. Punishment is the use of aversive stimuli to decrease the probability of a behavior recurrence. Negative reinforcement is the taking away of aversive stimuli to increase the chance of a behavior recurrence. Negative reinforcement can be really powerful, particularly in creating an environment that feels secure to a student. This is often more expectedly experienced than tangible reinforcement. As with any reinforcement type, it is essential to partner negative reinforcement with social reinforcement.

Here is an example of negative reinforcement: The teacher tells the students that she will remove five story problems if the class time is maximized to do their math work properly. Eliminating the story problems from the math homework negatively strengthens appropriate behavior by taking away the unwanted stimuli of a lengthy homework assignment.

  

The Use of Consequences:

We must set expectations and explain what the consequences will be when these expectations are not met. A consequence needs to not better than what the misbehaving child is currently experiencing so he will be motivated to want to modify the behavior.

Example: A consequence may be presented to a child as a choice. A teacher might say: “I have asked you twice to work quietly. If you continue to talk, you will have to work at another table.” This is a way of holding the child responsible for his behavior. Consequences should be consistent, promptly applied, reasonable and related to the behaviour concerned.

However, before negative consequences are implemented, appropriate and rich incentives should first be developed to reinforce desired behavior. It is essential to give much encouragement, praise and nurturance as children can be easily discouraged. When negative consequences are administered, they should be given in a fashion that does not embarrass or put them down. In addition, it is important to keep in mind that the rewards used with these students lose their reinforcing power quickly and must be changed or rotated frequently.

Whatever reinforcement, reward, punishment or consequence is used with children, it should always be paired with a social reinforcement, such as praise and encouragement.

Reinforcers in the form of stickers have proved effective as incentive and behaviour modification tool for my son, Miggy. Below are pictures of him with his stickers which has actually developed into an obsession.

(Miggy, now 14 yrs. old, diagnosed with autism at age 2yrs/9mos in 2005) 

Assisting a Child with Special Needs

How does it feel to assist a CSN?

Allow me to answer this question in two ways — as a mother and as a teacher.

As a mother of a CSN:

My first reaction? Scared! It is like stepping into a world unknown. What I read technically in books is just so different from the real thing. When my son was diagnosed with autism in 2005 (he was 2 years/9 months old then), I was pushed into an unexpected situation with no time to think, no time to mourn, and no time to catch my breath. Scary! Overwhelming! Tiring! And later, thankful. I felt lucky to be gifted this experience, thankful for this opportunity for only the chosen few. Living with a CSN, assisting and providing the best possible care, addressing his every need, and trying every possible intervention and even the never-before-tried strategies, gave me hope in the unknown, faith in myself and in what I can do and the length I would go just to make him better and fit into society.

As a teacher:

It feels rewarding to see the child unlock his world, and allow and trust me to get into his world where no one has ever had access. Through my years of experience in assisting children with special needs, I learned that getting through to them emotionally opens their mind academically. I not only help the children but their families as well. I make them see that life is going to continue for him after the diagnosis, that there is something to look forward to, that is the CSN’s independent living and possible employment, and a better placement in an accepting society. And on its fruition, it would really feel SO GOOD knowing that I was a part of it.

Every experience with a CSN will always humble me down and remind me that “Nobody is perfect,”  — each one unique in his own little way. 

Truck Assemble

Here's Miggy assembling a truck out of small blocks.

Legal Protection for Filipino CSN

How much legal protection does the Filipino child with special needs have?

The state has an obligation to provide reasonable accommodation and protection measures to persons with disabilities. Here are some legal protection measures as contained in the following laws which are commonly useful: 

1. Republic Act 7277 – Magna Carta for Disabled Persons (I always have a copy of this in my bag, in case of emergencies or the need to provide proof for privileges for my special child.)

- an act providing for the rehabilitation, self-development and self-reliance of PWDs and their integration into mainstream society.

- rights and privileges for disabled persons, such as employment, education, health and social services, telecommunications, accessibility, political and civil right.

- discrimination against PWDs; housing program; tax incentives and exemptions

2. Administrative Order No. 35 – Annual observance of the National Disability Prevention and Rehabilitation Week every 23^rd of July, the birthdate of the sublime paralytic, Apolinario Mabini, by all government departments, bureaus, offices, corporations, institutions, state universities and schools.

            - through promotion and implementation of activities/programs for the welfare of PWDs;

            - to stimulate public awareness on all matters and issues involving PWDs and encourage

            every citizen to take active responsibility in uplifting their economic and social

            conditions as well as recognizing the abilities of our brethren with disabilities;

            - to encourage the PWD sector in taking pro-active roles in nation building.

3. Batas Pambansa Blg. 344 – An Act to Enhance the Mobility of Disabled Persons by Requiring

Certain Buildings, Institutions, Establishments and Public Utilities to install Facilities and Other Devices

- through the use of UD (Universal Design) principles in architectural facilities or structural features, such as a separate wheelchair-accessible entrance and a gently sloping ramp; wide and automatic sliding doors; restrooms that can address the needs of all users; high-contrast, large-print directional signs; lever handles rather than knobs for doors; non-slip walking surfaces.

4. DILG Memorandum Circular No. 2009-129 - Compliance To The Issuance Of Identification

Cards And Purchase Booklets For Persons With Disability (PWDs)

    DOT Memorandum Circular No. 2011-04 – Special discounts to persons with disabilities

            - the entitlement of at least twenty percent (20%) discount to PWDs in the following

institutions and establishments: hotels, restaurants, recreation centers; theaters, circuses, carnivals; medical and dental facilities and services; land, air and sea transportation; educational institutions and services.

5. Executive Order No. 385 – Creating a task force to address the concerns of PWDs

- a body that shall formulate strategic interventions and provide expeditious response to address the immediate concerns of PWDs

    Executive Order No. 437 – Encouraging the implementation of CBR Community-Based

Rehab for PWDs

-        Affordable or free health and social services for PWDs; Accessible to all PWDs

Getting laws implemented and fighting for equal rights is an ongoing struggle for many PWDs. Accessibility, availability and affordability of services are often a problem. Some schools may have policies related to discrimination, harassment, or bullying, however some are not strictly implemented.

Some establishments, particularly restaurants and drug stores do not honor the PWD card.

In terms of employment, there should be a stricter implementation of the laws and policies. In Section 5 of Republic Act (RA) No. 7277, it says that government organizations engaged in social development such as DSWD, DOH, DepEd, etc., are required to reserve 5 percent of all their casual, emergency and contractual positions for PWDs. I just hope this really applies — and that it’s not ningas kugon, palakasan, or papogi points.

I hope the this administration will make possible financial assistance to ALL Filipino PWDs and not just the senior citizens. Medications, rehab services and therapies, assistive devices and SPED services for PWDs are costly, we all know that, and oftentimes only the financially able are able to avail and sustain these. Very sad but true.

Go Red Warriors

The Red Warriors (Miggy's team) won two champion trophies, for Cheer Dance and Field Demo in the Sports Intramurals held at the Lualhati Sports Complex.

Water gun

"Miggy," I called. "Can you please help me water the plants?"
And obedient as we all know he is, he ran inside the house, took his water gun and...

Ho-Ho-Ho in August

With nothing to do these past three long, chilly, stormy brownout days, we just couldn't resist the pull and spirit of the BER months. Ho-Ho-Ho!

Teaching thru Repetitions

Autistics are visual learners. They learn effectively through repetitions.
My apologies for the label. It may be offensive for some to address them as "autistic." Others prefer the more acceptable "persons with autism" (PWAs). Me, I don't mind at all. I'm just being true, accepting and open. We all should be.

 Notice that he wrote the items thrice.

And this is how I teach him spelling. Again through repetitions.

Thou shalt clothe the naked

How about a little fun post today?

I was packing away some of Miggy's toys and I found this. I had a good laugh!
And wow, Miggy knows that private parts should be covered!

Thou shalt clothe the naked.

Mamon-it-yourself

It is very seldom that his sister is here with us. She studies in Manila, that's why. So I make it a point that they do an activity together every time she's home.
I bought this limited edition of Monde Mamon two weeks ago and waited for Ate Clarisse.

Well, isn't that cute?