The uniquely human Robert and my journey with autism

(PART I)

My dear wife and I were living in the Middle East from 2012. We were newlywed and had not given a great deal of thought to having children. I had older children (now 30 and 26) and we had not discussed trying to have additional children.

Around 2016, we discussed having children and although it was not a desperate need or desire, we decided we would try. If it didn’t happen, we were fine with that. We were not having success naturally. In Abu Dhabi in the United Arab Emirates (UAE), where we were living, In Vitro Fertilization (IVF) clinics seemed to be on every corner. They were one of the government’s efforts to increase the Emirati population as they were a small minority of people living in the country.

We decided to look into IVF. We met with several doctors in several clinics and came away unimpressed each time. We tried different medications and it didn’t seem to impact anything. We had sort of given up, when a friend of ours from the university shared their story with a clinic in town. We decided to look into it.

Cost was a concern as well, as it is not inexpensive. We decided to try it once and if it wasn’t successful, we would accept that.

Coming back from a trip to Iceland with my son, Greg, Denny and I went to the clinic to start the process. It all happened remarkably quickly. Denny (my wife) had to receive daily injections via her skin. We were told to come in just for a brief check up after about 10 days. The doctor said it was just to make sure my wife was ok, but that there would be no evidence of the embryos developing yet.

Remarkably, he turned to us while looking at the ultrasound and said, “congratulations. You have twins!” Denny’s face said it all. I was wearing a suit as I had just come from university. It was a remarkable and very happy day.

We had no idea about the many blessings headed our way in the form of twins.

We were very excited and you could feel that life would never be the same again. The first months of pregnancy were very difficult. Denny was sick and bedridden for three to four months. At the same time, we needed to move from our Reem Island apartment as it was a smallish, one bedroom space. I was looking at apartments every day and Denny was laying in bed sick. Eventually we found a two bedroom apartment near the Corniche in Abu Dhabi, a short walk from the beach and the parks. The move was challenging as Denny was still sick, but the movers made it relatively easy.

As the months passed, we eventually made the decision to give birth at the hospital called, Danat El Emarat, which was primarily for Emiratis at the time. It felt like a five-star hotel. It was very nice.

Each time we went they would do ultrasounds, etcetera and we were told many times that we had twin boys as indicated “clearly” on the images.

At about five months we were then asked, “Do you have a name for the boy and the girl?” That was the first we knew we were to have a boy and a girl. What good fortune. Twins, both sexes….all at once. On the way home from the hospital we had decided on Aisha for the girl. It was a name I always liked and it meant “full of life,” or something to that affect. I did not realize that Aisha was also Prophet Mohammed’s (pbuh) favorite wife. We had determined Robert would be the boy’s name to honor my father. His middle name James, reflecting his father and a mirror of my name, James Robert. Aisha’s middle name was to be Marie.

As the days passed, we explored our new neighborhood, taking short walks along the sea water and shopping nearby. The anticipation built. Denny was uncomfortable much of the pregnancy and was quite thin considering she was carrying two children. Her parents were scheduled to come about a month early to be there when the babies were born.

In the middle of the night, I awoke to Denny telling me her water had broke. I was shocked as I had allowed myself to drink some rum that night for the first time in ages. I was groggy, but jumped up quickly and we got a taxi to take us to the hospital. Then I realized her parents were arriving that day as well! It was a wild morning.

Denny was as calm and composed as ever. The babies were very ready to enter the world but a caesarean was required due to their positioning. I was with Denny behind a shrowd and the procedure took place on the other side. Aisha came first and was fine. Robert then came and there was concern immediately. He wasn’t breathing as well as he should be and he was whisked off to the ICU. Such a juxtaposition of emotions. Elation with birth, fear due to Robert being taken to the ICU and Denny’s parents due at the airport, not knowing what was happening. Lacking experience and language to navigate things at the airport, the timing fortunately worked out. I was able to meet them at the airport via taxi. I asked them if they had heard yet as I thought maybe her sister had told them something. They said something to the effect of knowing that she was pregnant. That was funny!

Aisha was cuddling with her mother contentedly and Robert was somewhere else in the hospital. For the next week, my job was going to be making sure Robert had some company in the ICU. Maybe that is why we have developed such a close relationship. From those very first moments, I felt something so deep about Robert. I deeply and equally love all of my children, but the other three never encountered such challenges that have been presented to Robert. My heart went out to him. I wanted him to know I was there. I wanted him to feel my touch and hear my voice. My daily routine was to be with him in the morning, in the middle of the day and after work while running between the hospital, home and the university. After a few days, Aisha went home. Robert remained behind. After a week he was able to join us at home and the inseparable bond between Robert and his twin sister began. Aisha weighed in just over five pounds and Robert about 4.5 pounds. They were pretty tiny.

Denny’s parents were to stay in Abu Dhabi almost three months and were of great support. It was a magical time. The twins received a lot of curious attention everywhere we went. The many residents in Abu Dhabi that come from all around the world, showered them with affection. I loved taking them out in the double stroller. Somehow having twins makes one more popular and approachable. We were also told not to take them out at dusk as that is when evil spirits showed up. Of course I told them I didn’t believe in that. Sorry.

We loved our time in Abu Dhabi. It was very family friendly. People love children there and do not see them as a bother in restaurants and other public places. Much different than in the USA. We took regular walks along the water, visited parks, walked through malls and simply enjoyed the peaceful, safe environment. We hope to get back there soon to show the twins where they were born.

During their first year of life, they traveled to the countries of Georgia, the Dominican Republic and the USA. When in the USA, we had to go to the urgent care facility as we all had respiratory problems. I have always been so concerned about the fragile nature of life since Robert’s beginning in the ICU. Thankfully, both children have arrived to the age of seven very healthy and strong. Looking back it seems very brave of us to have carted them around the world like that. Later we were to go to Armenia and Mauritius during their second year of life.

During the first nine months or so, we didn’t have any special concerns about either child. I had noticed that Robert had the peculiar ability to locate the moon in the sky or airplanes before anybody else could. Even when they were hidden behind buildings. I mentioned this several times, but was always dismissed. It seemed unusual to me.

He developed more slowly than Aisha. He crawled later, walked much later and made many fewer sounds. Doctors assured me that any of my suspicions or concerns were misplaced. After about 20 months, we sought out speech therapy for Robert and briefly had him receive some therapy. By that time we had moved into the Grand Millenium Hotel Apartments near Al Wahda Mall in preparation for our move out of the country. I had decided to retire to spend my time with my young children and my aging parents. We would not be rich, but I didn’t want to miss out on those two things.

Covid was settling in as we prepared to move to the Dominican Republic. It was touch and go getting out of the UAE, but we did arrive in the Dominican Republic on March 9th. Our flight was on their second birthday and they were celebrated in business class. It was quite a moment. They had a blessed life.

When we first arrived in the Dominican Republic, Covid was just starting to hit hard and San Francisco de Macoris, where we were living with Denny’s parents was quarantined from the rest of the country due to Covid cases there. It was early March 2020. We arrived late at night in the rain and moved into our new apartment above Denny’s father’s Colmado (neighborhood store). It was an exciting, different time. I was retired and in no hurry. It was ok to me to be passing time in the apartment and venturing out occasionally to get groceries during the restricted hours. There was a strictly enforced curfew in place.

I started my WordPress blog at that time, to which I have rarely returned. I think I did 100 entries in 100 days. I didn’t spend a lot of time on it, but it was fun to review my life in that manner. I became very sick with what was most likely Covid, but that is another story for another day.

Robert and Aisha were playing in a very restricted area as few ventured out during Covid. I was not really focused on Robert’s development or lack thereof because it was as if there was no frame of reference and he spent a lot of time with grandparents. We were just enjoying our new existence.

I was using the downtime during Covid to look for a place for us to live. I was communicating with realtors in parts of the Dominican Republic, Panama, Costa Rica and Belize. I was unable to travel anywhere, but suddenly, busses started running in the Dominican Republic, so I chose to take a bus to Punta Cana to look at some properties. I was robbed in Santo Domingo at the bus stop (read here) and then went to Punta Cana to look at some houses. The realtor took me to a large villa that was way out of my price range, but I fell in love with all of the space and decided to pursue the purchase (See the villa in Cocotal here). A little about the process here.

The following week I brought Denny to look at the villa and she liked it as well. What not to like? The house was huge, right on the golf course in lush vegetation and walking trails throughout the 27 holes. She was sold. It was an impulsive decision as many have been for me, but for the most part it has worked out well.

Then I was consumed with wiring money, reading all of the documents in my second language (Spanish) and getting everything arranged to move there. Once we moved in, I started to notice just how far Robert had regressed. He was no longer interacting with us very much, not making eye contact and doing repetitive behaviors such as spinning wheels around. He was not hitting developmental milestones and the alarm bells in my head started going off.

We went to a recommended doctor in Punta Cana and she said we needed to go get an EEG test in Santo Domingo. I had just been robbed there and also did not have my legal residency, so I would have been driving illegally. It seemed my world was crashing down on me. I, for some reason, contacted one of Denny’s neighbors on Facebook and she suggested I talk with her sister, who was a doctor now living in Spain. Carolina, her sister, knew Dra. Bernarda de La Cruz and Centro Medico in Punta Cana. Dra. de la Cruz is a true hero. She has a son with autism and when he was a child there were no resources to be found. She dedicated herself and continues to this day, to create a center for autism called, “Autismo Sin Fronteras,” or Autism without Borders.

We met with her and she did think Robert was on the spectrum and had us fill out some behavioral surveys. Indeed, he scored on the scale of autism. Dra. De La Cruz was very calm and humble and never claimed to be the expert in autism, but we immediately trusted her. Our next step was to go get an EEG in Higuey, which was much closer than Santo Domingo. To prepare for the EEG, we had to keep Robert up the entire night, so that he would be sleepy the following day for the test. It was a very difficult night and an even more difficult following day. We almost got in an automobile accident going the wrong way on a one way street. It was extremely hot and our airconditioner didn’t work in the car we had purchased. We were all hot, sweaty and tired. When we arrived at the clinic, we were made to wait for hours and Robert would not fall asleep. I walked him around the rough looking block time after time in the stroller. I felt like I was going to explode under the pressure. Eventually we were able to get the test done and it was all negative. Negative in that there were no signs of irregularity such as epilepsy. It was an entire day. Our journey with autism was just beginning.

So what happens when you learn that your child has autism or is autistic? It was a somewhat traumatic, dramatic time already. Covid was in full swing and we were living in relative isolation. I was not able to travel to the USA to see my aging parents. My residency in the Dominican Republic had been overturned, so I was essentially an illegal alien and we had just paid cash for a large villa in Punta Cana. What should I do? What should we do?

I was devastated and at a loss. I could not sleep. I didn’t know much about autism. I had just dumped a fortune into our new villa, yet had to consider trying to move to the USA for more resources and learned that real estate at that price doesn’t move easily in the DR. Should Denny go through the immigration process to get Robert there and how long would it take? How much would it all cost? Could we afford it as I had just retired and counted on the low cost of living in the Dominican Republic. Stressed would be an understatement. I recall laying face down on our Coralline stone floor on the ground level, crying with my face feeling the coolness of the stone.

I took an online course through a woman who had an autistic child. Soon I was reading everything I could about autism. I became quite aware that there were many charlatans and false claims every where. People were taking advantage of vulnerable parents like myself to make money off of autism. It was disturbing. As a parent, I felt like I should try everything or I would be negligent, yet I didn’t want to harm my son. Diets, medications, treatments such as stem cell therapy, on and on….very confusing and disconcerting. My anxiety was high. The online course, although another money grab, had some helpful information. The one thing I remember that still is important….the best way to manage a meltdown is to never let them happen. You need to know the potential triggers, plan and prepare for them and avoid them. Golden advice.

I called a wife of a childhood friend, Leona, who had dedicated her life to her autistic son long ago. She was encountering that situation when there was much less research and fewer resources available. I cried during our Skype conversation and she was very reassuring and recently we have rekindled our relationship as they live nearby.

I believe within the first few days of learning of Robert’s diagnosis, I ordered the book, “Uniquely Human,” by Barry M. Prizant. It is a work of art. He has spent about five decades working with autistic people and families and his perspective is invaluable. In fact I just received the book again yesterday to take me back to that time and relearn the gems that I did those first nights. His advice and perspective took my anxiety down several notches and gave me peace of mind and taught me that autism is not an illness, but a different way of being human. It is such an insightful read. He is so correct in his analyses and articulates his understanding brilliantly and provides excellent examples to demonstrate his understanding. What a gift. I spent those first nights reading parts of the book electronically in the heat of the Dominican Republic under an overhead fan in our high ceilinged bedroom.

The autism center was operating very limited hours during Covid and was truly the only option in town. It was started by Doctora de La Cruz. Her son with autism was living in a “home” of sorts in Santo Domingo. From what I understand, when he was diagnosed with autism there were almost no resources nor understanding of autism in the Dominican Republic. Even in 2020, very few people in the Dominican Republic were familiar with autism. I would liken it to the USA 30 or 40 years earlier…or more. It was disconcerting to say the least. Thanks to people like Doctora de La Cruz, the awareness and resources have both increased dramatically in the last handful of years. Dra. de La Cruz is one of the few people I have ever met that rise to the level of almost hero status in my mind. She is a remarkable human being and I will always feel indebted to her.

Speaking of people I will always feel indebted to, Robert has received so much love, care, therapy, education, understanding and more from so many remarkable human beings that I will never be able to compensate them appropriately for their heroic efforts. I am continually impressed with the people in Robert’s life that somehow see him for the uniquely special human being he is. They can see his unfiltered love and enthusiasm for life. He also makes people feel seen and loved. Two organizations that have been incredibly supportive in Mount Vernon, Washington is Centennial Elementary School and Blue Water Associates ABA Therapy. We are so fortunate.

Initially, at the autism center, Robert was received a handful of hours of therapy per week. He started with the psychologist Elizabeth and and an occupational therapist, whose name I cannot recall. Both were from the Venezuela following an exodus from that country. They were well educated and trained. Elizabeth had a heart of gold and Robert did benefit temporarily from the OT. I soon began to see some things I did not approve of from the occupational therapist and thus started my advocacy for Robert. Through the five years plus up to this point, I have had to make sure Robert was receiving what I considered beneficial and appropriate therapy. We have been fortunate and the vast majority of experiences have been positive and beneficial, but I can recall one occupational therapist, one ABA therapist and a couple of speech therapists that I had to ask to be replaced. He also began to receive a little speech therapy in Punta Cana at the clinic from a Cuban woman who I grew to appreciate a lot, but initially declined service from her. She proved me wrong over time. Another lesson learned. Placing your young autistic child’s welfare in the hands of another person takes tremendous trust and patience not only with the provider, but yourself.

Each day we would drive the treacherous highway from Bavaro to Veron to deliver Robert to his therapy. It was hot and dangerous. I often had Robert viewing different educational videos or songs on YouTube to help engage him during the travel time. Meanwhile, we kept searching for other ways to supplement Robert’s development. We located a small group called, CENHAD. A woman named Maria rented a space in a local mall. They were serving children with autism. They had a few instructors that would do activities with the children. They had a musical specialist come in from time to time, a Cuban dance instructor and a man who could play soccer with the kids. They had sessions two to three times per week in the afternoon. It was challenging for us. Aisha was allowed to participate but seemed to experience tremendous anxiety and vomited most days. Robert would try to escape in the mall to look at things in shop windows and would throw tantrums. It was scorching hot at the same time. It was arduous.  Hats off to Maria for establishing that. We also got to take a bus trip to the country where the kids got to ride horses. We then found a family nearby that was just starting up a nursery for children with autism. It was a Dominican family that had lived abroad in Spain and New York and returned to the DR with this entrepreneurial concept.

They were just starting up and had no clients. I went to interview them and found the place immaculate and well-resourced but the place smelled like smoke intensely. I questioned the owner about this and was promised that it was just the workers building the place. Thus started a nice relationship and experience. Robert and Aisha attended this “pre-school” for a while and benefitted tremendously, but eventually, Aisha needed something more.

Soon, Aisha was attending Bavaro Innovation School and Robert enrolled in a four hours per day “school” program at the autism center. There were only a handful of kids and the building was very rudimentary, sometimes flooding after rains. The people inside were what made it special. The instructor, who was from Venezuela was a special woman. She worked so well with Robert. All of the people that Robert has worked with continually gave me hope and optimism that he would progress and eventually speak, learn to put on his clothes, learn to use the toilet and so on.

One of the tremendous stressors is not having any idea of the trajectory of development and there are no concrete assurances. It is scary. Early on, I committed in my heart and mind that I was ok with whatever the outcome was because I loved Robert so much. If that meant changing diapers when he was an adult and not being able to use words to communicate with him, I was ready to be there for him. Gratefully and to me miraculously, he is so very functional now. He is a stylish dresser, dressing himself each morning, is excelling in a regular school classroom and has become a somewhat accomplished athlete in baseball, soccer and basketball. Anything athletic and he is all over it, practicing at every opportunity. So much to say about how his physical coordination has progressed.

Robert was doing better and progressing, but we had made the decision to try to immigrate to the USA. It was about June 2021. I set about laying the ground work for Denny to immigrate to the USA. This is a long story in itself. I could do it myself, but also worked with a lawyer to double check everything we did. It is a very inequitable process, favoring many countries over others and the waiting line was long from the Dominican Republic, which was not ok, as time is of the essence for addressing autism early in life. We needed to get Robert there. We could have gone without my wife, but that was not a feasible option. We could not maintain two households separately, financially or otherwise.

I set about petitioning for an expedited immigration based on Robert’s needs. This was rejected multiple times. We received a very official written diagnosis from an amazing pediatric psychiatrist in Santo Domingo. I translated the document and included it in our petition. We were still rejected. I wrote representatives and senators from my home state and filed complaints with the Immigration Services as I could see the discriminatory practices in place. It was upsetting to talk to an official that essentially admitted to their flawed, biased practices. I kept pressing and threatened to take legal actions if necessary. Suddenly we were approved for an expedited immigration. Around the same time I received my residency in the Dominican Republic and we realized we needed to sell our home in the Dominican Republic, which became much more difficult than anticipated. It was a chaotic, stressful time, but we pushed ahead.

Many autistic people have what some people refer to as obsessions. I like to refer to such things as enthusiasms. In Robert’s case, one of his early enthusiasms was umbrellas. We had a huge, rainbow colored umbrella that he was so attached to that for a while we had to lay it next to him to get him to fall asleep. If we left it outside, he would stay next to the sliding door looking at it. When a child is unable to speak, it is challenging to figure out exactly what they want or need. It was that way with Robert. If Robert saw an umbrella, he was lost to us. I remember one day by the pool seeing a woman walking around with an umbrella and cursing her as I knew Robert would see it and go to it. He did. Another enthusiasm that he developed there was kites. We flew kites on the golf course and at the beach. That enthusiasm transferred to the USA and we went through many kites. He and I viewed countless YouTube videos on flying kites, building kites, kite contests and more. In both cases, umbrellas and kites, the disruptive aspect of these enthusiasms has gone away, but these enthusiasms can be critical to regulating the behavior and anxiety of an autistic person. Some parents and people see the behaviors as a negative thing to be eliminated, but the autistic person is greatly calmed when pursuing these passions. In my mind, it is usually a mistake to try and take it away. The author of, “Uniquely Human,” compares it to a neurotypical person with a hobby….someone who paints, collects objects and so on. It is really no different. The hobby pleases a neurotypical person and calms them. These enthusiasms help calm the child or person with autism.

Robert has passed through many such enthusiasms. Some have been more disruptive to the family than others, but we have learned how to work with them along the way. He has had fixations with specific clothes and shoes. This year, he had to wear overalls every day for a while. But…what is so wrong about that? The intensity with which he experiences these things seems greater than a neurotypical person, but are not so different. One enthusiasm that has remained consistent is his love of baseball. He has what I estimate between 4,000 and 5,000 baseball cards and reads them at night. We have a camera to his room (which we installed when he went through a difficult time breathing a couple of years ago) and at night you can hear him reading the names of the teams out loud: Toronto, Milwaukee, Seattle, and so on. It is much like a meditation and eventually he falls asleep. He knows all of the baseball teams, their logos and much of their histories. He owns around a dozen baseball gloves, five to six helmets, a half dozen baseball pants, jerseys and much more. His enthusiasms have led to tremendous educational opportunties as well. He went through a period being enthused about the flags and countries of the world and knows so much as a result.

Another aspect of autism that we have learned so much about is the value of predictability. Each person with autism is unique, but most need predictability in their lives and when that goes away they sort of lose trust in their surroundings and the world in general, which raises their anxiety and leads to what are referred to as meltdowns.

We learned to consistently tell him what to expect ahead of time. Step by step. This was very helpful. He has come so far in that regard that we now take him doing ok for granted, but if he is struggling that is one thing to keep in mind. For quite a while, I had to lay down next to him at night for him to fall asleep. I must admit that it made me feel special and I enjoyed being close to him, but it was part of his routine and he needed it to function well. If I forgot, it was a problem. In the mornings for quite a while, he would remain in bed until I came in, hugged him and then tickled his feet. Without that, the mornings did not go well. We still brush teeth together every morning and honestly, I quite enjoy the routine, but it means something quite different for him than for me.

Transitions are critical as well. Transitioning from one activity to another. “In 10 minutes, we will be going to the store,” etcetera. He has become much more flexible at this time and we don’t have to be so scripted, but I anticipate that we will need such strategies at times in the future. The start of this school year was difficult. Everything had changed. Music, library, health and PE were all on different days than the previous year. That upset Robert. It messed with his predictability. Recess took place on a different playground. Everything had changed. His class was down a different hallway. It was a very rough beginning to the year and I think these changes had a lot to do with it. Thankfully, he is excelling in every aspect like never before. I am so impressed with him.

Preparing to leave the Dominican Republic was very emotional. It had only been two years since I had retired from the University in Abu Dhabi and so much had happened and changed. We enjoyed our house in the Dominican Republic, but felt that we needed to make the decision to go to the USA for our family. There was so much to get done before moving. Sell or rent the villa, sell the Toyota Rav 4, sell, move or get rid of all of our belongings. Make travel plans to immigrate and so on. A lot to digest and plan for.

We eventually had the dates within which we had to enter the USA, so we planned around that. I started lining up schools in the United States and contacting medical groups to line up therapy for Robert as soon as possible. Normally, there is quite a wait time for diagnosis and treatment of autism. We had the diagnosis in the Dominican Republic, but were not sure if it would be honored in Washington State. We signed up for insurance and our first appointments for the kids. It was coming together little by little. We weren’t sure where we would live and finances were a major issue….and of course the villa to deal with.

We ended up deciding to rent the living space in the basement of my sister’s home in Anacortes, Washington. It was mainly a decision between my parents’ house in Shoreline, Washington and Cate’s in Anacortes. We made a good decision and immediately felt at home upon arrival.

Selling the villa in Punta Cana became a major project. Properties take many months and sometimes years to move in that area. There are not enough buyers with cash and financing is challenging. Of course I didn’t know that before. The process is much different in the Dominican Republic and anybody can be a real estate agent, so you must be very careful. The good part was that I could also be my own realtor. We had realtors and some prospective buyers coming through our house daily, which was time consuming, stressful and overall not super productive. It was looking like we would not be able to sell it in a timely manner, which would have been somewhat disastrous. Remarkably, one evening when I was at my wits end, I got a call from my wife when I was walking around the golf course. A lady was at our house saying she wanted to buy it. I almost decided not to come back to the house, but I did. Maria, who I now consider some kind of Godsend, was waiting for me at the door when I arrived and said she wanted to buy the house. I asked her if she wanted to tour the house first and she said, “No. I lived in the exact same house just down the street when my son was born.” She had an emotional attachment to the villa. It seemed too good to be true, but eventually, we worked out a contract and three and a half years later, we have almost arrived to the end of the deal.

We left the Dominican Republic on March 15, 2022. A similar story happened with our car. The man who purchased it allowed us to keep the car until the day we left. That was also too good to be true. Somebody was looking out for us. We transported all of our belongings to my wife’s parents’ house in San Francisco de Macoris and were taken to the airport by the buyer of our vehicle. Soon we were immigrating via MIami and on our way to an entirely new chapter. Scary and new, but we were on our way.

Arriving back in the USA, we immediately dove into securing therapy and school for Robert. It was a challenging time with many, many phone calls and tremendous assistance. The medical system in the USA is very disjointed and challenging to negotiate, not to mention ridiculously expensive. No margin for errors or making the wrong assumptions. We were blessed in having the psychiatric diagnosis from the Dominican Republic being honored here. We were immediately referred for ABA (Applied Behavioral Analysis) therapy, occupational and speech therapy, but none of it happened quickly and there were errors with the referrals. Fortunately I had the time to be persistent and within a month or so we were able to commence ABA, which was a Godsend. ABA therapy is the gold standard for therapy related to autism, but it has mixed reviews and was scary as a parent. It has evolved and from our experience has been spectacularly effective. We had therapy, in-home, from 8-12 every morning, five days a week and were present the entire time. Chelsea, the first therapist was amazing. She had such positive energy and truly enjoyed her job. Robert was so excited to see her every day. I would call what they did, “play therapy,” as they mixed in learning with play at all times. If you can do this three times, then we will go fly your kite and so on. We were then able to enroll Robert in preschool in the afternoons. We were concerned with him taking on close to thirty hours per week, but it seemed the more he took on the better he performed and did so with joy. His therapists always seem to develop a deep affection for him and I can completely understand that. He is a joyous, loving being.

When we moved to Mount Vernon, Washington from Anacortes after purchasing our new house, we were concerned about the therapy and school arrangements, but with a lot of work, we were able to arrange continued therapy and enrollment in the special needs preschool in our new school district. Of course during this time we were having to prepare for Aisha, his twin sister at the same time. Robert’s speech was still not happening very much and he was very difficult to understand when he did speak. We were super concerned about him entering kindergarten and then suddenly, about a month before the school year began, his speech started progressing rapidly. It seems he always rises to the occasion right in time. He was still difficult to understand but progressing quickly. Fast forward to this year, second grade and it is very challenging to get him to stop talking and most of the time he is much easier to understand. I am grateful for this every moment. Occasionally when he is being a bit bothersome by talking too much, I want to tell him to be quiet, but then I realize I don’t ever want him to be quiet again.