Our “Little King”
The first question I had to ask was, “Will he be able to marry and have his own family?” I wanted so much for my son to have a normal life which, for most of parents, would mean our children having a happy family of their own. The therapist can only race his mind for his answers taking care not to be so blunt and yet give only a little hint of hope so that I will not feel too hurt or too hopeful that what I have dreamed for my son will even come true.
Keagan Malik was born on January 20, 2003 through cesarean section. His father was surprisingly awakened by our aunt in his stolen nap while waiting for the baby. “It’s a boy!” our aunt exclaimed. We never expected a boy since all the ultrasounds before the delivery revealed another girl after having our eldest daughter 2 years earlier. I gave my husband the right to name him. Keagan Malik means “little king.” He might as well be because as he grew up, he ruled over our hearts and lead our lives.
Malik was a very well-behaved baby. I remember not going through the every 2 hours nursing, and the forever cradling and soothing that I had to do for my daughter when she was very small. The daily routine wasn’t too difficult for me and his lovely mestizo face never fails to melt our hearts. Our families were ecstatic to have Malik. He was the first boy grandchild to both me and my husband’s family and more exciting was the fact that he is the only one who bears my husband’s last name after 2 generations in their family. We had high ambitions and wishes for him as any parent would for their child. Family members would come and visit us taking their turns holding him.
It was when my husband’s sister who came home to the Philippines for a vacation when Malik was barely three weeks old that things took unexpected turns. I brought Malik out from the room at around 6 am when my sister-in-law, together with other relatives, arrived in our home. It was too early but they were eager to see Malik who took a stark resemblance to his father. The usual way was to have family members compare each other’s features claiming a tall nose, fair skin or big eyes as a family trademark. They then told stories of my husband’s childhood and how he was a mama’s boy. When I took Malik back to the room to have his diaper changed, I noticed his umbilical cord stump bleeding. I wasn’t exactly too bothered because cord stumps do bleed in newborns but I thought it strange because his cord fell off two weeks ago and was already in the course of healing.
He’s Too Tiny
What we expected to be a regular check-up where the doctor would give out prescriptions for medicines turned out to be a series of tests in Malik’s intestines and an emergency operation. We were all shocked. I couldn’t believe what I was hearing and I just kept reassuring myself that the hospital had all the cures for any illness. Malik was too tiny for such invasive procedures. I didn’t want to think about it. He was only three weeks old! The surgeon informed us that he had Congenital Hirshprung’s Disease, a condition where parts of the small intestines do not have functioning nerves to facilitate stool secretion. In Malik’s case, there were two identified segments. There was waste build-up in his stomach causing it to bloat and stretch the skin in his abdomen, the reason why his umbilical cord stump was bleeding.
After Malik’s painful barium x-ray, the doctor and his assistants prepared for the operation. I could only weakly say to the anesthesiologist and surgeon that my son’s life rested in their hands. As I turned towards the waiting area after seeing the doctor and our son to the operating room, my husband and I took comfort in each other. Even if I was the mom, I had to keep a strong stance to give courage to both me and my husband. Between the two of I us, I was the stronger one when it comes to handling emotions. A stifle or a cry from me would break my husband in this situation. Inside, I was shattered.
The waiting took six hours. I was already preparing myself for anything and then praying mightily, “Dear God, please don’t make it happen.” I held Malik when the procedure was finally over. He was white pale and very, very cold. His eyes were shut tight and his lips were drained of color. The doctor said we need to warm him up and it may take a while before he is allowed to have his milk. I never put him down as I tightly held him. I could not cheat the tears from my eyes. We were told that the operation had three stages and this was the first. We had to schedule two more operations to finally cure his disease. There are some small chances that it may recur again and so, we had to keep watch of his health. We went home with Malik in a colostomy - an artificial, temporary passage for his stool from his intestines.
My Introvert Son
At home, things became “normal” as we got used to Malik’s condition. He grew up hitting the usual baby milestones despite his colostomy – teething, eating solid food, walking and responding to people around him. However, when he was under two years old, he seemed to choose to be confined in his own solitary play. It was also during this time that other family members begin to notice that Malik would not respond to his name when he was called. He spent more time in the bedroom playing with his toys and he would shout or wail when he wants something but he would not verbalize what it was.
My father-in-law noticed this when we stayed at his house in their hometown for a vacation. “You might need to see an ear specialist,” he said. “Malik may have a problem with his ear.” Both me and my husband were skeptic about it because to me, he didn’t seem to have any problems so we didn’t see an ear doctor when we went home. Malik reacts to noises but sometimes, when people talk to him or call him, he wouldn’t look to them or answer questions. I always thought that Malik was just an introvert kid who would choose finishing jigsaw puzzles (he was very good at puzzles when he was more than one year) over swings and slides. His body would cringe and stiffen even at the base of a slide. He just didn’t like them no matter how much prodding we would give him with his sister helping out. He would draw all over the floor using crayons for hours and he can finish scribbling on two reams of recycled bond paper from his grandma’s office in a day. And compared to his older sister who was very talkative when she learned how to talk, Malik had a small vocabulary which he uses such as nanay (mama), tatay (daddy), juice, rice, chicken, water to name a few. He could however distinguish colors and letters of the alphabet.
“It’s OK. Nanay is here.”
During his second operation in 2005 at the Philippine General Hospital (six hours from our city), Malik expresses his fear of the needles, x-rays and other hospital equipment by vehemently screaming. He would wail and clutch me in fear making sure that not any of the nurses would successfully hold him. I had to suppress my own pain and exasperation hearing the constant shouting of my son in resistance to any of these painful procedures. I would talk to the nurses before his tests to explain to them that my son is afraid of what they would do to him and I repeatedly begged them to at least get all the blood samples and x-rays they need one time to spare my child of any more hurting. Even as they inserted two drips, I prayed so hard that his small veins would accept the needles easily. If not, we had another shouting and struggling session for another needle insertion. There is no other way to comfort him but to hold him and tell him over and over, “It’s OK. Nanay is here.” With his dehydrated body and pale face, he would look at us with his sunken eyes in his pacifier. It tore us apart.
Malik became popular in the hospital during his three-week stay. Nurses were extra cautious when they enter our room to take his temperature or administer his medicines because I would constantly look at them and remind them to try their best not to disturb him when he was sleeping or do the procedures gently when he was awake. Three days before we were checked out from the hospital, Malik’s head surgeon together with her interns came to our room and told us about Malik’s surgery. He still has his colostomy but the doctors have already cut the dead segments in his large intestines. We had to return to have his last of his surgeries to close his colostomy and finally be able to use his anus to secrete his stool. The head doctor then finally commented on Malik. She said that he needs to improve his communication skills and that we should encourage him to socialize with others.
One Step At A Time
After his operation, Malik was back to playing with his favorite toys, usually a collection of small items such as cars, blocks, crayons and pens. He would arrange them and line them up. He liked playing with building blocks and loved to draw. His quietness and disinterestedness in active play nagged us that our son definitely needs to interact with people more. At three and a half years old, I took him to join classes as a “sit-in” student at the community childcare center where our daughter regularly enters. The teachers were kind enough to permit me to sit in the class with him until I tried to leave him inside the classroom on his own while I watched hiding from outside the window to see if he was able to cope up with the rest of the kids. For me, the teacher’s attention wasn’t enough to guide him. When he wouldn’t follow instructions or respond to the games the teacher taught them, I felt frustrated.
Staying at home as a full time mom gave me time to give as much activities as I can to my children as much as our finances can. Malik’s two operations and some health problems of both the children along the way took a toll on our finances. I was pushed to augment our income by going into contractor business for textile supplies. Everywhere I went, Malik went. He would fall asleep and wait quietly inside the car while I made deliveries, had short meetings and made estimates. He was behaved enough to wait for me. He needed only his pen and a notepad and he would scribble away until I arrived.
Still, his communication skills improved just a little. This gave way to less wailings and screaming if he was not given what he wanted. He didn’t have eye contact with people around him. Only when he really wants something would he look people in their eyes. He rarely initiated talk with other people and he remained confined to himself engaged in his own play. My additional job and my husband’s printing job in another town meant less time and attention to the children and so, it was difficult to keep track of their growth and development.
Two years after Malik’s second operation, we were able to save enough money to have his last operation in 2007. Over the anxiety that we felt just like during the two earlier operations, I felt a little tinge of excitement. Finally, Malik will be free of his colostomy giving him ease to move around and he can use the toilet just like anybody else. Now at four years old, he had grown taller and bigger surprising his doctors. At his age, he should be able to communicate his emotions well but when faced with the medical kits with needles, he was in his usual screaming and wailing mode. It was harder for us to keep his arms and legs down during needle insertions as he struggled furiously.
His head doctor noticed this behavior. She asked us if we have seen a pediatric developmental doctor to seek advice regarding his behavior. We never did. He had constant check-up with his pediatricians back in our city – pediatric surgeon, pediatric pulmonologist and general pediatrician - and none of them remarked on Malik’s behavior. To me, he was my baby that needed special attention. We never realized that he might be having problems because of this. The head doctor did not tell us her suspicions upon seeing Malik’s behavior and language skills. After the operation, she urged us to see a developmental doctor back home. She could only look at us and say, “Let’s take this one step at a time.”
“What have I not done?”
It took at least four months after Malik’s last operation for him to gain back his weight and be strong enough to do his daily activities. It also took a while before learning that the toilet is used for defecating. With my husband away, I apprehensively called the pediatric developmental doctor. I didn’t exactly know what to expect as I did not make any prior inquiries or research on what a developmental doctor does. I was just expecting her to give my son his check-up and recommend activities for his communication skills. For some reason, I sent messages to our close family about the doctor’s appointment
The doctor was very friendly even if we were her last patient for the day. I immediately told her about Malik’s congenital disease and gave as much details about his operation. I even boasted his “talent” in finishing his puzzle of 24 pieces at a little over one year old. She smiled and expressed delight upon hearing this. After giving her my son’s “medical history,” the kind doctor told me that she needs to see Malik alone. She said she needed to do some tests and that I need to wait for at least two hours. I was reluctant to leave him but I did what I was asked to do after telling Malik that I will be waiting for him outside. He reached for me whining but agreed to be left alone with the doctor when I showed him where I will be waiting close to the clinic’s door.
Malik is very good in following instructions or orders. I would soon find out that he is a “yes” boy always answering yes to questions and just following orders, sometimes with prodding, without complaining even if he didn’t like it.
The waiting part was excruciating. I moved myself near the clinic door to at least hear even just small sounds imagining what went on in the room. The doctor’s secretary told me time and again that everything’s ok. The doctor finally called me and I immediately hugged Malik and carried him on my lap. “Everything went well,” she said and then explaining to me the five-page checklist she had in her hand. It turns out that Malik’s overall developmental age was that of a two and a half to three-year old. His language skills are way behind, his cognitive equivalent to three years old, his motor skills were not fully developed for his age. My mind was saying, “Ok. There surely is a way to teach my child all of these things. The doctor will help.”
On last page of the report, the doctor scribbled her diagnosis: “Global developmental delay with signs of Autism Spectrum Disorder.” I didn’t read any of the other words. It was just the Autism that stuck to my mind. The doctor was trying to explain about Autism Spectrum Disorder (ASD) but she was like some foreigner speaking a language I didn’t understand. I was more shocked and confused than hurt and depressed. I didn’t know what was going on. I only had notions of autism from being used for name-calling people who didn’t know what they were doing. All I can do was hug my son, read through the report again, nod my head and say, “I see. So what should be done?”
The doctor explained to me that Malik has to undergo a series of therapies such as occupational and speech therapies. I asked, “How long?” and she said it usually takes years. “Are there medicines? When will he be cured?” The doctor might have taken these questions as a hint that I had no idea of my child’s condition. She explained that unfortunately, there are no medicines and that there is still unknown cause and cure and that one in 300 (in 2008) had it around the world. I had to ask again, “So, there’s no cure?” She said, “None as of this time.” My heart raced. She has got to be kidding me. She referred me to a therapy center that was giving therapies to children with developmental disorders and assured me that the therapists are experienced and graduates of the most reputable schools in the country. I had nothing else to say but agree to her. She asked us to return after a month for a regular evaluation.
In the car, I can only look at my son sitting quietly beside me. I was still confused. I went through the doctor’s report again and everything came back to me one by one. Little eye contact, few vocabulary, limited communication, lining up toys, spending solitary play, repetitive hand movements, anxiety, tantrums. These were all signs and all the while I thought that this was just my son’s personality and that he would soon overcome them when he grows older. But no known cause and cure? That is just impossible. In my mind I thought I knew that the doctor was wrong. After all that we have been through with our son and being the fighter that I am, I said to myself that this is just another challenge that we can overcome. Or so I thought.
Remembering what the doctor said about accepting this condition and going through denial stages, I thought I had accepted Malik having ASD that same day. Yet, up to this day, when Malik has bad days, I would turn to blaming myself and carry this heavy guilt-feeling for not doing everything for my son and giving him all the support he needs. When I broke the news to my parents, they were just not accepting the news straight face. “He will soon grow out of it. He’s just a late bloomer,” they said. I also thought so. But the explanation given by the doctor was enough for me to realize that there is indeed something wrong with my son. My husband was crushed with the news. After his operations, then yet another. I remember now what the doctor told us, “Disorders come in multiples.”
Please help us
I almost gave up when I couldn’t find the therapy center the next day. It was cold and raining and the directions given to me weren’t very clear. I finally got to a big two-storey house and in the first floor was the therapy center. When I entered, I was surprised to see that there were around eight parents seated in the couches. There was a small play area and an even smaller reception room. The parents were looking at me perhaps because I was new and more because they knew that I was like them who had a child with problems. I gave the secretary my referral slip and she looked at me and said sorry. There weren’t available schedules left. In confusion of all the new things around me, I felt desperate and begged her to please find a schedule even if I was already wait-listed. A kind therapist noticed me pleading and he looked up and said, “I will take his schedule.”
I was relieved and very thankful because I felt that so much time have been wasted for my son to get some help and another week or so is just not an option. He took Malik’s report and asked us to come back for another one-hour evaluation. As an occupational therapist and have been working with children with developmental disorders for over three years that time, the therapist was able to identify Malik’s weaknesses. After his evaluation, he told me stories of similar cases. It was kind of a relief to me that Malik was not the only one with such condition and that unfortunately, there are some children with more difficult disorders. He drafted Malik’s occupational therapy program which included activities to improve his play and social skills, sensory motor skills, gross and fine motor skills, cognitive skills and activities of daily living skills. He also advised speech therapy. Aside from the developmental doctor’s evaluation, the therapist informed me that Malik had sensory processing problems. He had gravitational anxiety and tactile dysfunction. This would account for Malik’s fear of the swings and slides and any aggressive physical activity and his sensitivity to holding things that are cold, slippery or too rough.
I phoned my husband about the news. We were getting help. I thought it would be over soon and that it will be ok just as long as we followed all recommendations and orders. Malik was scheduled to have two occupational therapies and two speech therapies a week. I never knew how expensive this was going to be until after having completed the four weekly therapies regularly for a month. After that month, I asked that we get two speech therapies and one occupational therapy and later on down to one therapy each that lasted for three years.
Understanding our Little King
The first month of Malik’s therapy was like getting to know our son all over again. Nights of research and hours of exchanging stories with other parents from the therapy center opened a whole new perspective on how I would look at my son. I bombarded the therapists with questions and searched for possible ways to hasten Malik’s improvement. The therapists’ constant conference with the parents every after session and their diligent written documentation of what transpired during the therapy were tremendous eye-openers and supportive guide as we were encouraged to continue the activities at home.
What was an easy learning process for a normal child as he develops became a difficult challenging task for us. We had to teach Malik adjectives, verbs, nouns and use make sentences to communicate with us. It was a struggle for us in the beginning but the structured sentences taught by the therapists made it easier. He had to learn how to answer the basic questions like who, where and what. How and Why questions were very difficult for him. He had to be always reminded to look in the eyes of the person he was speaking with. We had to teach him how to wear his clothes, properly, brush his teeth properly and wash his hands. He had to be reminded over and over again because his brain can only process slowly. Jumping, running, going on a slide and even learning and reacting to emotions have to be taught to him constantly.
But being the obedient child that he was, the first few months of his therapy showed a big leap of improvement from his behavior. Now, we can talk to him and he can answer our questions. And I realized that I have underestimated Malik’s capacity to understand things. I have become over-protected on him because of his congenital disease that I gave everything he needed even before he asks for it. For some time, his physical activities were also limited because of his colostomy. We dismissed his quietness and solitary play as his plain personal character and didn’t consider it as a hindrance to his development. With our enlightenment, came our struggles within ourselves as his parents as well as frustration for the lack of medical attention to ensure early detection of doctors for such developmental problems.
The effort and financial cost is heavy if you have a child with special needs. Therapies, toys, activities have to be provided for my son to engage himself to the world around him. Parents from the therapy center would discuss how to do things with a tight budget and the issue of the need for government support always surfaces in the discussions. Each parent, particularly mothers, who took the responsibility of taking care of their special child at home, would think of resourceful and innovative ways to sustain a special diet, an additional special education class, art and sport activities and alternative medicines. All wanting to help each other but sooner glued to their own child because of the immense sacrifice caring for them requires. I could only feel sorry for those families who couldn’t even afford to have their child evaluated, let alone undergo those precious therapies where a small achievement such as a non-verbal child uttering a single-syllable word or a three-minute eye contact is a major breakthrough.
We were doing everything to bring Malik out of his own world into ours.
Mainstreaming
“Your child has to learn to adjust to the rest of his classmates because we have a regular class.” This was what Malik’s first pre-school teacher told me when I approached her seeking to have him enrolled in a regular primary school. Her statement stung me so much but I hid it well because I wanted my son to learn, not academics, but to socialize with other children in school. I was quick to disapprove a local private Special Education school that was suggested to me to try out. The problem with most of the special education schools I have visited while I was hunting for my Malik’s school was that they had no concrete program for children with autism. Malik, in particular, can immediately mimic and adopt actions and behaviors. I was afraid he would do so from the children with other unique special needs who were integrated in one class.
I hoped so hard that the pre-school teacher I was facing would give Malik a chance at a regular class even if he was evaluated to join three and four-year olds. He was already five. I was more than grateful when she gave him a two-week probation period. In my mind, I was relieved because I knew Malik can be given instructions and behave as his attention span slowly increased thanks to therapy. If he loses interest, he will still stay behaved but immersed again in his own world. I had to take this chance.
I was sounding like a doctor when I talked to the teacher before the start of the first day of class. I prepared a printed documentation of Malik’s developmental progress and discussed it briefly to the teacher and her assistant. When I got the chance to include Malik in play therapy sessions at another therapy center, I learned that Malik can be given a shadow teacher inside the classroom. I asked the permission of the teacher if a shadow teacher can sit in Malik’s class and she agreed perhaps because an additional eye on Malik would be of great help.
Malik’s shadow teacher stayed with him for a month. He was a graduating student taking up psychology and whose school was partnered by the play therapy center for possible assistance to children with special needs and at the same time, can be taken up as a case study which is a requirement for their graduation. I welcomed the shadow teacher as a part of our family bringing him to the house so that he may see how Malik is when he is at home. I was very thankful that he was diligent and was sad to see him leave because of the demands of his studies.
My son can read!
When he finished pre-school, I was ready to transfer him to another school that was referred to us by his speech therapist. During the interview given by the head teacher of the school, she shared that her sister had a child with autism. I was ecstatic because I knew, here is someone who understands my son’s needs and my plight as a mother. I finally found a school for Malik.
Four months in the pre-elementary class, I was surprised when his teacher told me that he can already read three-letter words. Here is the biggest milestone Malik has achieved! I remember listening with envy to one of the parents in the therapy center telling her son’s therapist that her son got perfect marks for a spelling quiz in school. I approached her with so much happiness for her son and yet feeling sad and unsure for my own son. She said to me, which I remember clearly up to this day, “You and Mailk will soon get there.” Those words resounded in my head as I smiled at Malik’s teacher. We fed Malik with books and stories when we learned that he could read. Writing followed and simple mathematics as well.
Today, Malik is integrated in a montessori school where his social skills are continuing to develop while coping with the rigors of learning academic subjects. On his last semester, he showed interest and affection to one of his girl classmates in class. When we asked him, “Who do you like in class?” He hid his face and shyly replied, “Stef.” His dad was very happy and amused but we had to hid our over excitement from him because it might make him even more embarrassed. We asked him, “Why?” Malik simply said, “Because she’s pretty.”
The King continues to rule
Malik still has trouble expressing himself and still has problems in processing everyday situations. Having him in our family is not easy. At some point in our life, the pressure has put a toll in my marriage as we struggled to provide the needs of everyone in the family most especially the needs of my eldest daughter who I know is also greatly affected with Malik’s condition. But as we look back at what we have gone through, Malik still remained to be the reason why we are together as a family and why we continue to battle our limitations and bravely face challenges.
A look in his eyes in times of despair, uncertainty, depression and distress is enough to keep me back on track. He remains to be the king that rules our hearts.
