HOW IT STARTED

      Lea's diagnosis of autism was made when she was 5 years old. Compared to when most of the other parents knew that there was an issue with their child, this was on the late side. Lea was born in 1992 and seemed to hit the milestones on schedule. She loved letters and was able to identify them at a really young age. She loved to memorize lines from TV shows or from books and could repeat them to you impeccably. But her ability to communicate was very delayed. She didn't really put together complete sentences until she was 5.  At this age, the sentences were very simple ones. She was also extremely shy around children her age. Lea's preference was to be at home or in her room playing with her toys. At this point, we knew Lea needed the services of a speech therapist. She received speech therapy at school and also got it privately. It was obvious that the work did not end with these professionals. We would have to do our part at home.  

   The fact that Lea was echolalic, though worrisome to us, was actually an advantage. This was something confirmed by a psychologist who we consulted. At least, we knew she was verbal. She loved books so we provided her with the books she was interested in. Audio books were not readily available at this time so I used a tape recorder and taped myself reading the books to her. Most of the time, I just spent the time and read to her. One of the most effective things we did at home was put a password on the door to her bedroom. Each day had a different password. To get in the bedroom, she had to read the word and use it in a sentence. It didn't have to be a complicated sentence. A simple sentence would suffice. This was made into a game and that's what made it enjoyable for her. 

   To help with language, it was crucial not to stress Lea out. Lea, even to this day, does not do well in stressful situations. Then again, who does? When she wanted something like a cookie or a drink, I encouraged her to ask for it in a sentence. If she said "cookie", I would prompt her by saying "Can I please have a cookie?". Lea would then repeat the whole sentence, albeit slowly. Prompting was an important tool and I hoped the sentences would come naturally to her eventually. In time, they did. Time is operative word. The other important thing to remember is repetition. The practice of prompting had to be repeated over and over until the skill was acquired. 

   When we realized that social skills were another issue to deal with, we figured out that we might as well take advantage of Lea's ability to memorize lines easily. We used index cards and wrote sentences that applied to this situation. In this particular case, it was how she was to make friends. The index cards had sentences like "Hi, I'm Lea. What's your name?", "What's your favorite color?", "Do you want a cookie?", "Do you want to play hide and seek?".  I was told that autistic children do not learn incidentally. That is, they don't learn by observing other children. So what they need to learn has to taught. This is what I had in mind when we asked Lea to read the index cards over and over and memorize the lines so she could use them in the future. We did role-playing where these sentences were used. Once again, here we made it a game so it didn't feel like some kind of a "class". 

   Language and words go hand in hand. Fortunately, even at a young age, Lea loved books. We did our absolute best to provide her with all the books she wanted to read. Buying them was not the only way to do this. The library was another resource. Barnes and Noble and other bookstores were another. We used to go to Barnes for a couple of hours and just read and not even buy any books. There was no way we could buy books every time we went to these book stores. After all, we used to go a lot. Being a lover of books and magazines has been a life saver for Lea. Later on in life, she also learned to love writing. 

   The methods described here are not from a psychiatrist or psychologist or autism expert. They are from a mother who has an autistic daughter who is now 28 years old and has just graduated from college. It's from someone who loved their daughter dearly and wanted to do the very best for her. I hope what I described here helps another parent. We are, after all, in this journey together. Our children's success is our success too.

The Benefits of Speech Therapy

    One of the symptoms of Lea's autism was a delay in language. She was alway echolalic, which, in her case, means that she easily memorized lines on shows she watched on TV and repeated them to you. Echolalia is manifested differently in each child.  When Lea was repeating lines to you, her pronunciation was impecable but she was not able to hold a conversation and answer your questions logically. Of course, simple questions like "Are you hungry?"  or "Do you want a cookie?" could be replied to. I was grateful she was verbal but this lack of real language was an issue that needed some resolution. We were lucky enough to get speech therapy at school but this proved to be insufficient to get the kind of progress I thought Lea was capable of.

   So we turned to private sessions with a speech therapist (Lorraine Wankoff) who also taught at one of the universities here. She was absolutely the answer to our prayers. Lea had one on one sessions with her. I knew that there was no way we could keep up the sessions at the rate I wanted (about 4X a week) for a prolonged period of time because they were expensive. Normally, her sessions were done with just her and the child. The parents waited outside the room in the lobby. I pleaded with Lorraine to let me sit in a corner of the room where she held the session so I could take notes. I promised not to say one word (not exactly easy for me). She reluctantly agreed but told me this was not the norm. I took copious notes as the sessions went on. I wrote down exactly what the activity was, how Lea replied, what Lea said, if she looked at the therapist,  how long her eye contact was, etc. 

  With this data, you could see clearly if progress was made or not. Since there were notes on the activities, I could do that same activity at home. In my eyes, that would double the progress. Believe it or not, that actually worked. The idea is the speech therapist has a professional way of doing things and all I had to do was copy what she did. Lorraine put a lot of importance on creative playing even though board games were part and parcel of the session. Any kind of activity where language is involved was useful in promoting Lea's abiility to communicate well. She would have toys like dolls, chairs, tables, cars, animals on the desk. Then she would ask Lea where the doll was headed to or what they were going to eat. Lea would hesitate and think and answer. If Lea would echo an answer from a TV show that was ok with the therapist but she always redirected it so a more spontaneous reply could be provided. All these sessions were extremely interesting and of great help to us. 

   Slowly, we weaned Lea off these sessions when we were convinced that we could do it on our own and the sessions at school would suffice. This took time but we did get to the point where she was off it completely. The speech therapy sessions at school were replaced with counseling sessions. Lea had the great luck of having workers from an agency that supports the autistic community (QSAC). Without a doubt, this agency was crucial to Lea's progress. I am so grateful to them and to their staff. It really does "take a village" (to borrow a line from Hillary's book).  Even if a child is not verbal, the ability to communicate has to be honed so that our kids do not feel the frustration of not being understood. Better communication promotes better social skills and makes it easier for someone with this diagnosis to get taught new ideas and new skills.  Communication is not limited to actual speech. It could be sign language, using pictures or using a computer. Like Lorraine said "If you fix the language/communication issue, everything else will fall into place."

End of a Journey and the Start of Another

 My life has been intertwined with my daughter's life. Such is the case with any parent, but more so with a parent whose child has special abilities. Lea was diagnosed with autism at 5 years old. That was in 1997 which is a lifetime ago but, for me, still feels like yesterday. Being an only child has given her the advantage of parents who could concentrate their efforts on what she needed and what she required to have the best possible life. Fortunately and, despite what the original doctors said, Lea has thrived and done really well.  She is high-functioning and, by the grace of God, and with the help of numerous individuals, she has accomplished what the original diagnostics said she would  never be able to do.

Lea's education was always the most important project we undertook. She spent a couple of years in a segregated special ed school with the most loving and nurturing educators. One of them secretly told me to find a different school for her because she could see that Lea did not belong in this setting. The search led to private schools in Manhattan, Queens, and other locations. I am pretty confident that we could have placed her in one of these very expensive schools with the public school system shouldering the expense (a lawyer would have been needed and we, her parents, were more than willing to fight the good fight). Meeting the inclusion coordinator at that time (Mayra) was the biggest blessing we could have ever received. With her guidance, I was convinced that an inclusion setting in a neighborhood public school would give Lea the best possible educational set-up. Inclusion, at this time, meant 2 kids with special needs in a regular classroom with a visiting special ed teacher helping the general ed teacher and a para-professional specifically for the 2 children. Lea had great role models in her classmates and very encouraging teachers who, with the training given, were able to provide her the chance to succeed despite the challenges she faced. Lea, who had issues with social skills, made lifelong friends here and, to this day, still keeps in touch with 2 great ladies. Before the end of 6th grade, Lea was able to transition to a regular classroom and was no longer under the supervision of the special ed department. She did get services still like speech therapy and counseling, both essential in moving her in the right direction. This was the setting throughout middle school. 

She auditioned for a performance high school and miraculously got in. She majored in drama and was faced with tremendous difficulties. There were more challenges here than what she had ever faced before. Frank Sinatra School of Performing Arts (whose benefactor is Tony Bennett...yes the great singer Tony Bennett) is a school with students who start out running...all dying to perform and almost all extremely creative. Lea is shy but very into drama. She can memorize lines like no one else can. She needed a lot of guidance in learning the craft but was more than willing to put in the effort. This school had the most wonderful teachers and counselors who gave her the opportunity to gain confidence and courage. I wasn't sure that this was the school for her. So much so that when I first saw her on stage doing a monologue, I burst into tears. I have to say that high school was rocket fuel for this child. She graduated from high school with the drama award which is given only to 1 graduating student in every department. 

The next step was community college (Queensborough Community College) which took longer than the normal 2 years. It took Lea 4 years to finish but finish she did. Lea is prone to anxiety so taking a full load was out of the question. This didn't matter to us since all we wanted was for her to enjoy the college experience and get her associate degree. Once that was done, she wanted to get her bachelor's. This was an easy decision for all of us. All it needed was her desire. We were so on board. 

Getting her bachelor's was hard work for Lea. Since community college, she was pretty much on her own in terms of asking for tutoring help from her teachers and peers. Here at Queens College, she did the same and dealt with the many challenges any student faces. So after 5 years at Queens College, Lea graduated in the summer of 2020 and got her Bachelor's degree, major in drama, minor in journalism. The icing on the cake was her Magna cum Laude honor. 

I'm writing all this not to brag about her accomplishments (well, actually, I can't help bragging) but, honestly, it's to let parents of young children who may have been diagnosed with a similar issue know that our kids are gifted with so many special abilities that need to be discovered, nurtured and brought to the forefront.  With our help and the help of other willing individuals (especially teachers, counselors and therapists), they can reach unbelievable heights and become unbelievable human beings. 2021 will be another period of transition and changes for Lea, for us and for everyone else. We hope the pandemic ends soon so we can all get back to "normal".  I am of the belief that the future is bright and, together, we can lift each other's spirits. Here's to a BEAUTIFUL 2021. 

Coming To Terms With Retirement

   The title of this article sure makes retirement sound ominous. I, honestly, thought it would be. For me, the "end of an era" was December 31, 2016. Running a small furniture company and ending my career meant that the last couple of months would be extremely busy. It was and the situation was exacerbated by the feeling that I did not have the opportunity to truly train my replacement. This was a source of tremendous worry for me. It had to take numerous conversations with my 89 year old mother to convince me that this was no longer my responsibility and I had to "let it go" (Nanay must have seen Frozen.) As a footnote, I worked for this company for about 8 years then left for about 5 and came back for 33 more years. Working for the owner of this company was a great joy. When he turned over the company to the daughters, the situation was not the same and that will be a story for another time.
   So December 31 came and went. January 1 and January 2 were non-working days so we did what we had always done on easy lazy days. It was January 3 that would be the one to cement the idea that I had retired. Waking up and not having to frantically go about my day in order to start work early was no longer under consideration. This idea made me both thrilled and filled with nervous energy. It was a "now what" moment. It was hard to wrap my head around the idea that I could do whatever I wanted at any pace I wanted. I cooked our meals (love doing it but I'm not very good at it--- average at best, I haven't killed anyone with my dishes although my brothers think that someday I probably will.). I made curtains. Reading a book was so comforting. Finally, I could pick up a book and actually enjoy it without rushing to finish it. Doing things with my daughter and husband could now be done without considering whether it was going to conflict with something I had to do for work. And yet, it took a little time (perhaps a week or so) to get my rhythm going. At first, the whole day seemed to overwhelm me. If I cooked meals, then the house could not be cleaned. It was disconcerting to see the house in disarray. What the hell I said to myself! I used to do all that and go to work. That feeling has not dissipated.
   I've learned to pace myself and do things in a more relaxed manner (not easy for someone who lives in New York and is high-strung). So this is what they mean when they say take time to smell the roses. Today is Jan.31 so it's 31 days since that first retirement day. Today, I was asked to speak at a parent support group meeting. The topic was "How the arts help a child with autism". I've done this a number of times but work always seems to get in the way of being able to do it more often. It's my way of paying forward since there have been so many people that have helped me in my journey to make sure Lea (my daughter)  gets the best possible opportunities in life. Lea is now 24 so I'm an "old parent" who has had to fight the good fight for quite some time. Helping others with their journey is no big deal. Another thing that I have time to do. Retirement is great!!!!

A SPECIAL REUNION

   Los Angeles, California was the site of our latest reunion. This was a reunion of high school classmates. Our high school days were spent at St. Theresa's College in Cebu City, Philippines. We graduated in 1973. Oh, my....that sounds like decades ago. St. Theresa's is an all girls Catholic high school that has meant a lot to all of us. Many of us immigrated to the United States and look forward to every opportunity to see any of our friends and classmates. The California group started this yearly reunion. The deal has always been whoever could attend was welcome to do so. Every year the location is different and so are the activities. I think we've had 12 so far. Counting this one, I've been to 4. Every single one I've attended has been memorable.
   This is one of those events that brings you back to your home country and to days of old when we were just entering the adult world. Los Angeles has a lot to offer in terms of being the venue. There are numerous restaurants and an abundance of tourist attractions. Getting on one of those tour buses was a delight because you had a guide who could give you details about the sites and the homes of famous movie stars and celebrities. So there was no way restaurants and a tour was not going to be part of the itinerary. Because one of the hosts had a big enough home to host almost all of the attendees, a reunion program was actually possible. Despite not being a dancer, I found myself line dancing with our classmates who all happen to be really good dancers. There were unending stories and laughter. Catching up with each others' lives was part and parcel of the reunion. My classmates even managed to invite a friend who was also a neighbor of ours. He spent so many days in our home so was really close to us. Hugging him made me feel like I was back in Walingwaling (the street where we lived). The hundreds of pictures taken are obvious evidence of the fun everyone had.Even the simplest of activities like sharing a meal was totally thrilling. Needless to say, it was the company of these wonderful classmates that made the experience one to always remember.
   How fortunate we are to be able to do this! How fantastic that classmates from the class of 1973 find so much joy in seeing each other! I would be crazy to miss the NEXT ONE!

Being With Other Parents

   My daughter is now 21 years old and in her second year of college. It has been a long, wonderful, difficult, crazy and joyful journey and continues to be. We were reminded of that last night when my daughter and I attended a parents' support group meeting. These were parents of very young children running from age 3 to 7. For me, this was ages ago, but I can sympathize with these parents of young children diagnosed with either autism or PDD-NOS. There is that big shock when the diagnosis is first given. Once that initial fearful event subsides, there is that greater frustration at not knowing exactly who to turn or what to do for your child. My daughter's diagnosis was given 16 years ago when she was 5 years old and it still feels like yesterday. The meeting last night was a reminder of how we just never forget those feelings.
   To have your child shuttled from one educational setting to another was so traumatizing not just for us the parents but also for our daughter. It felt like none of the schools we approached wanted us there. My daughter was finally placed in a special ed setting which was the right fit for 2 years. After that, the search for a more appropriate setting continued. The godsend in all this was finding the agency that would provide us with the necessary skills to cope and help my daughter. QSAC was the agency I turned to and they have been there for us through all the difficult times. We still need them and we still have the "episodes" which I would not be able to go through alone. So, it is without shame that I admit how much I need their help. We are so indebted to them that the very least I can do is help them whenever they ask us to. Sometimes finances and work schedules get in the way, but as long as it is possible, we'll be there for this agency. That's why we came to the support group meeting. I have been on the battlefield a little longer than the parents who were there. They need to know that there is, in fact, light at the end of that tunnel. And it is a very bright light. Our children can be taught new concepts and new skills. They can make friends. They will show us how wonderful our lives are because they are in it.  The diagnosis is not the end of our lives as we know it. Every little accomplishment our children make is so celebrated. Because of that, I think we are the lucky ones. I must correct that and instead say "I KNOW WE ARE THE LUCKY ONES!!!!!"

Going Way Way Back / Part 3

   It has been such a long time since I've written about my mother's stories. It is now August 30, 2013 and I have just spent the whole afternoon with my mom. The time has been so special and extremely enjoyable. Since my mother lives in New Jersey and I live in New York, these occasions do not come as often as I would like. My dear mother has made us a fabulous lunch of sauteed bittermelon which is a favorite of mine but is bitter so not too many people like it. In addition, there are bowls of fish soup, rice, cucumber salad and some noodles. Everything was delicious. After lunch, we get down to business.
   Now it's time to continue with my mother's stories. In my last blog, I talked about how my grandparents and their children lived during the war (World War II, in case you were wondering). People are relieved that being able to get back to a normal life was within arm's length at last. At this point, my mother is now 15 years old. During the war, she was taught how to care for her younger brothers and sisters, how to cook and how to do a whole bunch of chores. Now that peace has come, she and my grandparents had to think about continuing her education. She qualified to go straight to her sophomore year of high school, skipping the freshman year. My mother beams with so much pride when she provides me with this "little" detail. This past May, my mom turned 85 and, at this age, when a person gives information similar to this last one, I can never see it as "bragging". In fact, it is quite adorable, even funny, when she tells me about it.  I would probably think the same way if it were someone else as long as they were this age. With the war behind them, the family goes about the business of being a family. My grandparents are busy being in the teaching business, the kids go to school, household chores are done and so on and so forth. All this is happening in Buenavista, Agusan del Norte, which is in the southern part of the Philippines. It is the equivalent of the suburbs. The big city in the Philippines is Manila, which is in the northern part of the country. My grandparents had a lot of faith in my mother who was the oldest child so they made the necessary sacrifices so she could go to a very good university in Manila. Apparently, the woman was super-smart and graduated college with honors (just like she did in high school). She went back to her hometown in the south and taught there. She said that during the period she taught there, their school won many awards. I realize my mother is 85 years old but I can assure you her memory is completely intact. So I am convinced that these details are true. You will not believe how she tells these stories complete with minutiae. It is so fascinating.
   At this time, my mother is now a young teacher and is enjoying the life of a single,working woman. Apparently, every child from their generation felt completely indebted to their parents for the sacrifices they made to give them a good education. Once they graduated, they felt it was their duty to help with the education of their younger siblings. My mother was, certainly, no exception. She was happy to give her entire paycheck to my grandfather. She told me that despite my grandfather's objections, she made arrangements with the school to have her paycheck given to her father. It is around this time that the story of how my own parents meet starts. It is so so so interesting and shows the great differences in our generations. So please stay tuned for the next blog.....