Journey, Part 1 - Beginning - Originally Written for the MW Magazine in 2008

It was the spring of 2007 when we began our long journey to understand what was happening in our son’s mind… He was almost three years old at the time but wasn’t vocalizing his wants and needs, nor was he able to be around a lot of confusion without having a meltdown and was refusing to be potty trained… We decided to take him to our doctor to see if there was anything we could do for him.

At the time, he was developing normally physically… In fact, he had gone from overly small for his age to about average, if not slightly above average… He had been born at 37 weeks but was the size of a 30 week old fetus when he was born. Seeing his physical development happen when it was supposed to be, even though he was born early, made me a little blind to the fact that he wasn’t talking or playing like other children his age. I thought he would catch up in time but the longer he was non verbal and having meltdowns when he was over-stimulated made me wonder if he needed some help learning how to talk or if he had a medical condition that physically stopped him from talking, like his tongue being tied… His oldest cousin had that problem and had recently had a small procedure to correct it.

Our doctor checked my son over from head to toe. There was nothing physically wrong with Lil Etoile, in fact, he was perfectly healthy. So we discussed various things that may work for him. Our doctor suggested a hearing test and maybe talking to a speech pathologist. We agreed.

Our son had his hearing test during the summer of 2007 and his hearing was perfect for a child his age. Since it wasn’t his hearing that was preventing him from talking, it had to be something else. We decided to pursue this further. My husband and I were determined to help our son in whatever way we could. We were put on the waiting list to be assessed by a speech pathologist and waited for the appointment for several months.

He had an assessment with a speech pathologist from Halifax, Nova Scotia in late fall of 2007. That didn’t go very well. Lil Etoile was non responsive. He didn’t want to point out different things when asked… He just wanted to look at the pictures and run around the large room. The result was a meltdown and my husband and I being very upset.

However, the pathologist decided that Lil Etoile was a good candidate for speech therapy, so we were put on the waiting list for a speech pathologist in our area. I was given a few tips to help myself to figure out what his wants and needs were. For example, if he opens the refrigerator, go over and hold up different things that I suspect he may want, like a can of apple juice and if he reaches for it, give him some while saying the name of the item.

This did work once in a while but it seemed that my sweet little boy needed extra help. I waited impatiently for our first speech therapy appointment.

Five months after my son’s initial assessment, we went to our first appointment with his speech pathologist in May of 2008. She is a little blond haired woman named Trina and I liked her instantly, she has an energy about her that makes one feel instantly comfortable and it wasn’t hard to tell that Lil Etoile liked her too. Despite a small meltdown, he warmed up to her in no time.

Speech therapy began in earnest… Trina would use different methods to get Lil Etoile to verbalize his wants and I would do the exact same thing at home between appointments. It was slow going at first but then we saw slight changes in my son… He was more apt to verbalize what he wanted or needed!! I remember being so excited the first time he said what he wanted without prompting, I picked him up and danced around the house with him!!

However, Trina noticed a few actions my son had that made her start wondering if he was on the Autism Spectrum. She noticed that when he really got excited, he would flap his hands and if he got over-stimulated, he would have a meltdown and we could not calm him down at all. She suggested that we see a psychologist to determine if he is on the autism spectrum or not.

I was very upset with Trina’s speculation at first… After all, I had the stereotypical image of an autistic person in my mind... A person like Dustin Hoffman’s character in the movie “Rain Man” or Megan Follow’s character in “Under the Piano”… Someone who was a genius but unable to completely verbalize their needs or sat in a corner in their own little world. Then I started doing some research and discovered that not all people on the Autism Spectrum are like those two characters… In fact, they are an example of the most extreme cases. People on the Autism Spectrum are generally more verbal and more connected to the world around them. They may need some extra help learning social skills or being more connected to their emotions but it IS possible, and for the most part, they grow up to be very productive members of society.

This gave me hope… Especially since a person I know who is an early childhood educator once said that my son was “stupid” and would “never amount to any more than flipping burgers at McDonald’s—IF he was lucky!” Those not so nice words made me even more determined to prove this person wrong—I would see my son doing more with his life than working at a fast food restaurant. I set out to do everything I could to make sure he has the skills to be able to live in this world and follow whatever career path he wishes to pursue.

We were referred to the South Shore Mental Health Program and met with a psychologist to assess Lil Etoile for Autism in the summer of 2008. We sat down with Dr. Valerie and went over my son’s medical history while he basically dumped out all of the toys in her office. Even a small meltdown was information for her, she told me, it would help her determine if he was a high stress child just by the way he reacted to changes and if he participated in any activities she tried to interest him in.

We continued going to speech therapy and in the fall of 2008, I started attending a multi-session workshop for parents and caregivers of children on the autism spectrum, to help me learn how to teach my son to learn. The workshop was hosted by Trina and her assistant, Mary, and there were two other families attending it. In it, I learned that asking (most) children on the spectrum a lot of questions will only cause confusion, so I learned to re-word things in such a way that it sounded like I was making a statement and letting him fill in the blanks at my cues. For example, I don’t hold up a dinky car and ask him what color it is, instead I say “This car is colored _____.” The cue for him was me pausing and he would then say what color the car was. I also learned that repetition is the key to helping a small child on the autism spectrum… Repeating a verse or simple song over and over again is not only fun for a child, it can also be used as a learning tool when it comes to every day life. One example I have used when trying to teach my son to treat our elderly cat with gentle hands is by singing a very simple song, “This is how we pet the cat, pet the cat, pet the cat… This is how we pet the cat… Soft, soft, soft.” I would then demonstrate how lightly a cat must be handled. Lil Etoile responded to the song right away, even filling in different parts of it when I paused to cue him. He is now being gentler with Birdie, our elderly cat, and will even sing that very song to her sometimes when he’s petting her. Repeating what one says and does, offering cues to the child to participate and keeping it fun seems to help a non verbal child open up and become more communicative, if not verbally, at least in some way like handing over a picture of a cookie or pointing to a glass of juice… Along with saying things slowly, demonstrating the proper grammar in speech and being highly energetic. Communication is more than words… It can be as simple as a smile or handing an adult a favorite toy or book. Learning to respond to these non verbal cues helped me understand my son and his behaviors/actions better.

Lil Etoile had his first autism assessment in the fall of 2008… His psychologist Valerie did the observation while her colleague Jeanie actually interacted with Lil Etoile. I sat in one corner of the room, observing, while they tried different tactics with my son in order to see what skills he had and what skills he needed some help with. For the first time in my son’s life, I watched him pretend play… He actually pretended to feed a stuffed animal some play food!! But when they ended an activity that was high interest for my son, he started having meltdowns and could not focus on anything else. I remember sitting there, crying, while my son showed his frustration that the activity he wanted to do was being put away. Both Valerie and Jeanie were very quick to comfort me… The meltdowns were giving them some very valuable information and it was okay for me to be upset. Watching one’s child get frustrated can be very stressful for any parent, they told me.

Later that fall, Valerie informed me that Lil Etoile was definitely on the autism spectrum, he has Autism Disorder to be exact. In a way, it was terrifying to know this… Knowing we had a very long and somewhat frustrating journey ahead of us scared me to the core. Yet at the same time, a glimmer of hope shone, getting brighter by the minute. We now knew what why our son acted the way he did and had taken the first steps on the road to help him. Even though I had been in the workshop for only a couple of sessions, I noticed some slight changes in my son’s communication… He was a little more verbal and more open to learning about the world around him.

During the workshop, we parents learned how to set up a visual schedule and show our children how to use it. A visual schedule is set up similarly to an agenda that one uses for appointments, etc, but much more detailed. Each evening, we set up what we’re doing each day so my son knows what to expect. It can have pictures, words or a combination of both on it. Each part of the schedule is put on a board, fastened with Velcro and as each activity is finished, the child takes it off the schedule and puts it away, in an envelope or on the back of the schedule. For example, our morning schedule starts off with a trip to the potty, followed by breakfast and watching cartoons before a snack and then my son gets some time on his learning computer before lunchtime. As each activity is finished, he or I remove it and go on to the next one on the list. We have adapted this for traveling or shopping… Just so he knows where we’re going and what to expect. We even have a “Today” and “Tomorrow” schedule so he knows what’s going on each day, along with his own calendar so he can see what’s going on during the month. I’ve found he isn’t overly interested in the visual scheduling yet but I do find he is more responsive to not as high interest activities if he does have the schedule in front of him. He’s more apt to finish something he doesn’t like to do before moving on to something he really likes to do if he can actually see that there is something he likes ahead.

As fall turned into winter we started noticing bigger and bigger changes in Lil Etoile’s communication and behavior. He was more able to express his wants and needs and wasn’t taking as many meltdowns as he had been in the past. We decided it was time to start trying new things with him. He had been sleeping in our big bed with my husband and me since he was 5 months old and was getting too big to continue sleeping there. My husband had been laid off from work at the time, so we decided it was the perfect time to try it. After all, neither of us got much sleep at night, due to Lil Etoile laying on top of us or shoving us both out of bed at different times during the night. Both of us have back problems and this intensified them. We had already set up a small bed in our room for Lil Etoile and were determined he was going to sleep in it and not sleep with us.

At first, we had a lot of sleepless nights… Lil Etoile apparently inherited my stubbornness and refused to sleep in his own bed at first. He would get up and try to climb in between my husband and me, but we were more stubborn and told him to go back to his own bed. There were a couple of nights where one of us would wind up sitting alongside of his bed, sleeping, just to keep him over there and not in the big bed with us. It took a few weeks but soon he was into the routine of climbing into his own bed at night. It’s been over a year now and we’re happy he took that first step toward sleeping in his own room. We have discovered that changing things in very small steps is the best way for our son to accept change. If we had moved him into his own room at that time, he wouldn’t have accepted the change as easily. So moving him from one bed to another in the same room was the best choice for all of us at that time… He knows he is not alone and can talk to us if he wants to… And we are right there if he has a nightmare or gets scared. I do admit to allowing him to crawl into bed with me after his father gets up to go to work in the mornings, that is our time to cuddle and talk about the day ahead.

Spring 2009 started with a visit to Yarmouth, NS so we could see my sister, her family and my mother, who lives with them. Lil Etoile didn’t like being stuck in the car for the two hour drive but was very happy to see his aunt, uncle, cousins and grandmother. I remember hearing my mother comment on how much his speech and behaviors have changed for the better… She noticed how Lil Etoile was talking a lot more and even starting to put sentences together. She then expressed how proud of him she was and I noticed she was following my lead in the way I spoke to my son. We discussed why my husband and I didn’t think he was ready to start regular school in the fall and the pros and cons of having him attend daycare for a year instead. I may be a stay at home mom but the benefits of having him going to daycare every day and interacting with other children his age outweighed the fact that it is expensive and we’d be driving him to and from the daycare ourselves.

Late spring 2009 saw Lil Etoile’s fifth birthday… He had come so far, yet he still had a long way to go in his journey. He still wasn’t potty trained and was still wearing pull ups. He wouldn’t tell me when he had to go to the bathroom, even after I showed him what to do many, many times. I was getting frustrated and was sick of changing poopy pull ups… We decided to buy him some regular underwear and try him with it. I wasn’t expecting it to work, in fact, I had visions of him starting school still wearing pull ups and needing to be changed each time he either wet or pooped himself.

After wetting the underwear and the living room carpet several times, Lil Etoile surprised me by running to the washroom one day in early June 2009, screaming “I need the potty!!” He didn’t wet or filthy up his pants that time. I was so excited, I was jumping up and down and cheering!! He finally got that using the potty in his pants was for babies, not for someone five years old!! He still has the occasional accident, but that’s normal for a child his age as far as I’m concerned. I’m no longer changing dirty diapers or pull ups, the occasional accident is not going to upset me at all!!

As 2009 progressed, we started noticing that our son was a lot more verbal than he had been… He started talking in full sentences more, he was starting to pretend play and was more conscious of the world around him. If someone started to cry in front of him, he was the first person to offer comfort and give hugs when asked. He used to respond to “I love you,” with blowing a kiss, then he progressed to responding with “I love you too!!”. He became even more verbal in what his needs and wants are and will not hesitate to tell someone when he is sad, happy or upset. The meltdowns started to show up less frequently and if he does get upset about something, we have learned to remove him from the situation and try to calm him down by distracting him with a high interest activity.

In April of 2009, Lil Etoile started attending a play group for children with social development problems, with the First Steps Early Intervention team… Some of the children were on the autism spectrum while others had other non-specified reasons why they needed some extra help. His speech pathologist, Trina, was one of the leaders, along with various members of the First Steps team. I met my son’s now First Steps caseworker at the play group, Joanne, who has also been a huge help with my son’s fine motor skills and play. Leaving him there for the first time was a shock for me. I had never left him with anyone but family members before and it was very new to me. I think I had more separation anxiety those first few sessions than he did… He was able to be distracted by Trina, Joanne and the other adults and children while I was wondering what I was going to do for two whole hours of unexpected free time. Lil Etoile played with other children his own age, participated in crafts, learned some new songs and made a lot of new friends. Those ten weeks gave him so many benefits. We are considering taking him to the play group again this coming spring, if it isn’t at a time or day that conflicts with his other activities or appointments.

I began researching daycares that spring and found two in the area that would suit him and make me comfortable leaving him there. Both had experience with children on the autism spectrum and were more than accommodating. Both directors answered my countless questions with patience and good humor, I wasn’t the first parent to be nervous about leaving their child with anyone other than family after all. I think they sensed how protective I am of my son… My son has no fear and will talk to almost anyone or run out in the road if he has a chance to. I was assured that both places would look out for him as I would. I felt my fears easing slightly. Seeing the fenced in play grounds at both centers eased my fears even more. Lil Etoile would be fine and safe at either one. I started getting anxious for a phone call from one of them, telling me that they had a spot for Lil Etoile.

However, both of those daycares were full for children in his age group when daycare started up in the fall. So we decided to start looking for an alternative—preschool. It would mean that Lil Etoile wouldn’t have as much time away from me and it would be more of a baby step toward attending regular school in the fall. Lucky for us, one of the daycares has a preschool program and had my son on the waiting list. I found out through a member of my son’s autism team that there were openings in the one class and I called to sign him up for it.

September 2009, Lil Etoile started attending preschool three mornings a week. For the first week, we started off slowly… The first day, it was only an hour, going to two hours the second day and the entire three hours the third day. I stayed those first three days during his transitional period. The fourth day, I snuck out while he was playing with one of his new classmates and sat in the car and cried for a few minutes. My baby was entering a whole new world and it was time for me to start learning to let go of him just a little bit now and then. There are days when he doesn’t want me to leave right away so I will stay until he says I can go, and that is generally after only 15 or 20 minutes, then he’s happy to play and learn with the other children.

He is in the smallest class the preschool has, with only 16 students in it. There are three teachers and an excellent student to teacher ratio. All three of his teachers are wonderful with him, they are so patient, understanding and gentle with him and the rest of the students. The class is divided into three groups, my son is in Shelley’s group with three other students that he is really good friends with. They are the best teachers a mother could ever ask for her child, they have been a godsend to me and my son. He is still very active and doesn’t like to participate in story time but he will do a craft and help Shelley get ready for snack time or get her something she needs when she asks for it… And if one of his classmates is upset, he is the first to offer comfort, even if it’s asking,  “Are you okay?” to the other student. He scribbles in a work book, paints with enthusiasm, drums for the rest of the class and is always trying to play the piano. He is a very loved and popular child by the rest of his classmates. They are so good and are very understanding with him too… If he doesn’t understand something, one of his classmates will explain it to  him in a way that he understands. If that doesn’t work, the other student will get Shelley or another teacher to help out.

October 2009 saw my son’s class take their first field trip of the year, to the Fisheries Museum of the Atlantic in Lunenburg, Nova Scotia. I was expecting disaster, considering how my son does not like to sit quietly and listen, but he surprised me. During the little learning session about lobsters, he tried to get up and run around but with a threat of going home (from me) he sat down and listened!! After the session, the lady showing us the lobsters played some music and danced to the “Lobster Dance”. No other students wanted to participate in it until Lil Etoile got up and started dancing right along with the lady from the museum!! The rest of the morning was spent doing crafts, touching safe sea creatures like a starfish in the museum’s touch tank, watching how a boat is launched for their maiden voyage and exploring one of the trawlers that the museum has berthed alongside of it. I managed to sneak off long enough to get a few pictures of Nova Scotia’s ambassador, the schooner Bluenose II, which has its home port at the Fisheries Museum. All in all, we had a lot of fun. It was a crisp and cloudy day but getting a little chilled was worth the fun.

December of 2009 was the daycare’s annual holiday/Christmas concert. All classes from the day care and preschool participated, which meant I was able to meet other families who had children in the day care and the other two classes at the preschool. Lil Etoile’s class sang two songs. He participated in the first song with no problems, then proceeded to have a meltdown during the second song. The director of the entire daycare was so good with us, she even tried to help me calm my son down and offered me comfort when I became upset about my son being upset. I cannot express just how grateful I am that Lil Etoile is involved in the preschool that he is… He has been accepted and liked for who he is, even if his mind does work differently than his classmates. Even the parents of his classmates seem to like him a lot and are always saying they are impressed with how far he has come in three months’ time. It’s like being a part of a much larger family, a feeling that warms my heart and makes me cry, I’m so happy.

The second field trip of the year saw us at a local bowling alley. Bowling is a VERY high interest activity for Lil Etoile, he has a set of toy bowling pins and balls at home and he uses my long, narrow kitchen as his own personal bowling alley. At first, he was taking meltdowns when he realized he wasn’t allowed to bowl by himself and he had to wait for the other three students to take their turns. After a while, he calmed down and was waiting for his turn. He did pretty well, he got a score of 55 after only 9 frames, which is really good for a beginner at candlepin bowling!! The last going off, he and one of his best friends were bowling down the same lane simultaneously… It was very cute and everyone giggled over it.

That same week, Lil Etoile had his very first play date with a friend. One of his classmates and their younger siblings came here to our house with their mom for the afternoon. Things went pretty smoothly. We had lunch and we moms let the older children play with Lil Etoile’s toys while we sat out in the kitchen with the youngest child and chatted. I had known their mother briefly several years ago, she used to be friends with a former co-worker of my husband’s and she is a very nice lady. We are discussing having another play date here later in the winter or sometime in the spring. Hopefully things will go as smoothly as they did during the first one, so we can continue this and maybe even have other students over for play dates in the future.

The winter holidays are always a busy time here at my house… Getting the house decorated, the artificial tree set up and the shopping can be very confusing to a child on the Autism spectrum. This past holiday season, Lil Etoile helped his father decorate… It was very cute to watch the two of them working together. Lil Etoile would ask his daddy a few questions and my husband answered them all with good humor. After all the decorating was done, Lil Etoile would look at the tree and point out what the different ornaments were… We have several cross stitched ornaments made by my mother and Lil Etoile was fascinated by the ones that have pictures in them… I have one that has a photo of his three cousins in it and he would point out each cousin, saying their names perfectly.

We always visit my husband’s grandmother at least once during the holiday season… This past year saw her niece and nephew in law visiting from Quincy, Massachusetts. As always, there was mass confusion at Nanny’s house… My mother in law, sister in law, brother in law and his fiancée were all there on Christmas Eve, plus various other friends and family members.

I was expecting my son to have at least one meltdown due to the noise, confusion and the fact that he wasn’t allowed to open any of the presents under Nanny’s tree. Once again I was surprised. Lil Etoile was distracted by his distant cousins, whom he adores. They let him open his gift from them on Christmas Eve… It was an electronic drum set, which he immediately started using to show off his drumming skills with.

All in all, the 2009 holiday season was the quietest and less chaotic one we’ve had since Lil Etoile was a baby. As of the end of February 2010, we still haven’t exchanged holiday presents with my mother, sister and her family yet, but we are planning a trip sometime during the month of March to their new house in the Annapolis Valley, about an hour away by car. I’m hoping things go smoothly… After all the people are the same, it’s the house that is new to us and our son.

January 2010: I register Lil Etoile at what will be his elementary/grammar school. It was a bitter sweet moment for me… After all, everything we had being working with Lil Etoile on had been building up to the moment he starts going to regular school with children his age. He will need a full time aide and lots of support for sitting down to do his work, interacting with other children and following the rules of the school and the hidden social agenda for at least the first year, if not for his entire school career.

January and February of 2010 were full of meetings between me, our autism team and various members of the preschool for deciding what the best action plan was for Lil Etoile’s first year of full time school. Tours of the school are being discussed, as are meetings with Lil Etoile’s future teachers and other staff members at his soon to be school and how we are going to assist him with going on the bus for an hour long ride every weekday. The bus ride will be a huge challenge, Lil Etoile cannot sit still for more than a few minutes without something to distract him and the confusion and chaos on a school bus may cause him to experience a meltdown or overload his senses to the point where he is so distracted, he may lose his perception of where he is and what he is supposed to be doing. A “bus buddy” is on the list of things to try with him… Having a child who is older than him and very responsible sitting with him may be the key to Lil Etoile having a successful ride on the bus every single weekday. If he cannot handle being on the bus, I am prepared to drive him to school each day but only as the very last resort. If he can go on the bus without problems, that would be the ideal situation and a major achievement for him.

As of February 28, 2010, we are considering putting Lil Etoile on medication to help him sit still and concentrate on his school work. If we can get him to take it, he will start off on the lowest dose and if that doesn’t work, we will be adjusting it as necessary until we reach the lowest dose that will help him.

Our journey has barely begun yet we have come a long way… We still have a long way to go before Lil Etoile is able to understand the subtleties of human emotions and the hidden social agenda but he is slowly starting to understand. Each time he learns something new about the world around him, I see his eyes getting brighter and he is remembering to use it at a later date in different situations. He is more social, more understanding and a very intelligent child… Our long term goal is to have him able to function in the big wide world as a fully adept and competent adult, but we still have a long way to go and a lot of work ahead of all of us before that goal is achieved. I don’t mind, I’m his mother, and it’s my job to see that any children I have are equipped with the skills and the necessary tools to see that he succeeds in this life.