April 2011 Update

Unlocking a Child’s Mind – One Family’s Journey With Autism Part 2

April 2011 Update

This is my (now) annual update on my family’s journey with Autism Spectrum Disorder. My son, Lil Etoile, will be seven years old in May of 2011, and although he has come a very long way, he still has a long way to go.

This blog is continued from a previous blog, Unlocking a Child’s Mind—One Family’s Journey With Autism Spectrum Disorder that I have posted here as a blog also and on the MW Magazine Website.

It is so hard to believe that only one short year ago, I had sent the original article in to the MW Magazine staff for approval. So many things have changed in that year… Some for the better, some for the worst. Being the mother of a child on the Autism Spectrum isn’t easy, the pain of setbacks are so much more difficult but the joys of success are so much sweeter!

February 21, 2010 saw a huge change in our household. At the time, we had only one very elderly cat, Birdie, but we were about to have another animal friend living here. My husband’s grandmother, Nanny, had been sick for a while and it was getting difficult for her to look after her dog, Sargent. In fact, Hubby and I had been going over to her house daily so we could feed both him and her three cats… She had been finding it very difficult to walk and really couldn’t feed them herself. Hubby and I had been helping her out with various things like shopping, running her to any doctor’s appointments, and paying her bills for her ever since we had moved out of her house in January of 2003 and into our own little house. She had been having mobility problems for some time by then and was on the waiting list to move into a nursing home by the time February of 2010 rolled around.

This particular day, she was having problems breathing, so Hubby took her up to the emergency room at our local hospital. She was checked out by a doctor and the diagnosis was pneumonia. She was going to be admitted for a few days, a week at most.

Since no one else could take care of her dog Sargent, and he needed to be with someone who could let him in and out of the house a lot (he is an older dog), Hubby and I decided to have him stay with us. He knows us, we were living with Nanny at the time she adopted him from our local animal shelter, and he and our son are very good buddies. He also knew our cat Birdie because she was also residing with us at Nanny’s for well over a year. It wouldn’t be much of a problem for us to have Sargent stay with us while Nanny recuperated from pneumonia.

Lil Etoile was VERY happy to see our (then temporary) new resident. Within days, the two of them were chasing each other around the house and Lil Etoile was helping me feed Sargent, it was his job to get me a scoop of dry dog food for Sargent’s supper. Lil Etoile went to preschool the day after Sargent moved in and told his classmates all about our new animal friend. It was quite cute to see!

March 2010: Hubby and I finally decide to try Lil Etoile with medication to help him sit still and concentrate on his schoolwork. He was put on a form of Ritalin that one can easily crush up and put into food or a small glass of juice. At first, we had to hide the fact that he was getting medication from him, normally he will refuse to take anything that he suspects is medicine. However, one day he caught his father putting a crushed up pill in his apple juice and asked what it was. His father told him it was something to make his juice taste even better. Lil Etoile believed it and willingly took the juice without having a meltdown! He now calls it his “blue salt” because the pills at that time were blue and it looked like salt when it was crushed up. His concentration and ability to sit still has increased exponentially… Before he was on the medication, he could only sit still for a few minutes, now he is able to sit and listen for a lot longer time.

We were finally able to exchange Christmas/Holiday gifts with my end of the family in March 2010 also. Lil Etoile adjusted to seeing his grandmother, aunt, cousins and aunt’s new fiancé in a new home and new area in no time. He happily ripped open his gifts, played with their pets and chased his much older cousins around the house while my mother marveled at how much further he has come in only a few months. The upcoming school year was discussed and I filled Mom and my younger sister in on exactly what Lil Etoile would be doing at his new elementary school. He was going to have a full time PSA along with special classes to help him with his fine motor skills like using a pencil. For the most part, he would be put into the mainstream classroom and able to participate in their activities. My mother was thrilled. She had been so worried that he would be placed in a special education classroom or school and wouldn’t be able to attend regular school. I explained to her that nowadays, children like my son generally attend a mainstream school but also have a lot of help along the way and an IEP, which is a special program set up just for the student with special needs… They are in a mainstream classroom but also attend special classes to help them with the courses and other things in the mainstream classroom that they are struggling with. My nephew has ADHD and although he is a very intelligent young man and is doing very well in school, he also has an IEP for help and support. Schools are trying to mainstream special needs students as much as they can, so they can have as normal of a school experience and learning as their abilities allow them to. It also gives them a lot better chance of graduating from high school and attending post secondary schools like Community College or university.

April 2010: By this time, we had found out that Nanny had inoperable lung cancer and would not be able to look after her pets any longer. So we made the huge decision to adopt her three cats.

The day that Hubby brought Amber, Angel and Noelle into the house was a huge event. All three of them were terrified, even though they all knew and loved the three of us. They didn’t know any other home but Nanny’s house and moving here was a very scary experience for them. Sargent barked constantly when he realized that the carriers held “his” three cats, Lil Etoile went crazy seeing all three of them here and our cat Birdie didn’t stop growling and hissing for several days. Within three days of moving in, the youngest cat, Amber, acted as if she had always lived here and was allowing my son to pick her up and carry her around, something I would never let him do with our then 20 year old cat Birdie!

Lil Etoile would also do his best to coax Angel and Noelle out of their hiding places, but most times, that did not work. He would toss cat treats across the floor hoping to get Noelle out from under the table but to no avail. Angel loves to eat so she would come out just long enough to eat a treat and disappear again. I was very impressed with my son’s patience with the three new “babies” as we called them. He loves animals and would do everything he could to help them adjust to living with us. 11 months later, they act like they have always been here, but with some huge differences. When Noelle was still living with Nanny, she was very shy, didn’t like to see many people and hated children. Now she’s a very sociable cat, always greeting visitors and most of all, has become friends with Lil Etoile. She allows him to pet her, purrs very loudly for him and comes when he calls her. They have become buddies and I am so happy to see it.

April also saw my son back in the playgroup ran by his speech pathologist and members of First Steps Early Intervention. This year, the group was very small, less than 10 children and no other children from the year before, but Lil Etoile attended it with enthusiasm.

May 2010 saw some minor and major changes here also. Spring was finally here and we were gearing up to get things ready for Lil Etoile to start Grade Primary in September and his sixth birthday at the end of the month. He had his Primary Orientation in May, and he did rather well in it. At first he didn’t want to participate in any of the activities but Ms. Joudrey, the Primary teacher at the time, managed to encourage him into doing some crafts and playing with his future classmates. He sat in what was going to be his classroom, met a lot of his now classmates and even had a tour of the elementary part of the school… The school he attends has two main buildings on its campus; the smaller building is currently for Primary to Grade 5 students, while the larger building is for Grades 6 to 9. I knew the school rather well and recognized some of the teachers who worked in the larger building. I am a graduate of the junior high end of the school back in the 1980s and I knew my son was attending one of the best schools in our end of the province, if not one of the best schools in Nova Scotia. They also had a lot of experience teaching and assisting students on the Autism Spectrum, so I knew he would get the best education that was offered in our area for ASD students.

Preschool was in its wrapping up for the year stage by the time his sixth birthday rolled around. We didn’t have a huge birthday party for him due to Nanny being in a nursing home and the entire family being busy with taking care of her old house. We had a very small celebration here, with just the three of us. Lil Etoile did get a lot of goodies from us, his two grandmothers, Nanny, and his various aunts and uncles. He was full of excitement at preschool the day after his birthday, telling his teachers and his classmates all about his cake and the Hot Wheels he received the day before.

Part 2:

Tragedy struck our family on June 5, 2010… We had taken Lil Etoile bowling that day and I was making supper when my elderly cat Birdie suffered a massive stroke. She wouldn’t have survived the night and was in a lot of pain so we did the humane thing and had her put to sleep.

Lil Etoile had gone to the vet’s with us but we kept him out in the car while Birdie gently slipped away from us. He had seen me carry her into the car and into the vet’s office, but when I didn’t bring her back out with us, he asked where she was. Folks, sometimes it is hard for any child to get the concept of death, but sometimes it is even harder for a child on the Autism Spectrum to get it and Lil Etoile did not get that concept at all at the time.

Between my own sobbing, I managed to tell my son that Birdie had gone to live with my own daddy, Grampie C (he passed away in 1997) and Grampie C would take care of Birdie and love and spoil her like we used to. He asked if we could go visit Grampie and Birdie… I told him no, because they lived so far away from us. Telling him that we can never see our beloved opera diva cat ever again was one of the hardest things I had ever had to do with him. It was his first time losing anyone he loved and I thought it was best if we all just pretended she moved away for now. I’ll tell him the truth in time, when he is more able to accept and understand how people and pets do die in time, but not now.

June also saw another major change in our lives, this time it was a good change. Lil Etoile graduated from preschool. My mother in law attended their closing ceremonies/graduation with me. Lil Etoile was a little upset due to having his normal routine changed, but managed to still have a good time with his teachers and classmates. He didn’t want to eat a lot at the pot luck lunch but he still had a great time chasing his classmates around the gym for the last time. I am looking into getting him into their summer program so he doesn’t get bored during the long summer vacation. He wasn’t able to attend the program last year because students must have at least one year of regular school behind them to qualify for it. He already knows the teachers and the teachers know him, plus he probably knows a few of the students that will be there. I’m thinking if he does attend it, it will be like he never left and he will enjoy himself.

During the summer months, Hubby and I did whatever we could on weekends with Lil Etoile. There were visits with Hubby’s mother, we would take him with us to run errands and even take day trips around our area of the province. In August, there was a family get together at my aunt and uncle’s house, and we spent the entire day there. Lil Etoile went into a swimming pool for the first time that day. I put him into a life jacket and held him up because the water was deep enough that it was over his head. He did not like it at first but was soon having a great time, laughing and splashing his cousins and second cousin.

Summer faded into fall and before we knew it, it was Lil Etoile’s first day of elementary school. He was very excited and could not wait to get on the bus!! I remember standing at the bus stop watching the bus go around the corner after he left, crying because he was now starting the longest part of his entire school career and had finally taken that first step toward getting his high school certificate.

His first day was filled with getting to know his new teacher, Mrs. R, his PSA, Ms. O, and the rest of his new classmates. He didn’t want to follow the routines or do anything at first but after some coaxing, he did participate in a few activities. Ms. E, the vice principal of the entire campus and principal of the elementary part of the school, had called me to give me an update on how he was doing and to reassure me he would be fine and eventually settle into their daily routine. When he got home that day, he was exhausted but happy, and according to the report that was in his communication folder from his teacher, he did rather well for his first day.

His first day of school was on a Friday and the next day, another major step happened to our precious son…

I had noticed earlier that summer that he had not one but TWO loose teeth, they were the two at his bottom front. The adult teeth were already part way up out of his gums and it looked like he was going to lose his first baby tooth at any time.

September 4^th 2010: While the eye wall of Hurricane Earl bounced along the Atlantic coast of Nova Scotia and the rain and wind raged overhead, my beloved son lost his first tooth!! I was expecting him to have an autism related meltdown because he does NOT like anyone touching him around his mouth and he does not like the sight of blood, he associates blood with pain and injury.

He surprised me. He was upset that he did lose a tooth and there was a little blood but he didn’t take a meltdown at all. I think my husband and I being so upbeat, cheering and being so happy that he finally lost a tooth helped him stay calm and then become excited!!

A couple of weeks after my son’s first day of school, I had my very first meeting with his Primary teacher, the principal, the Special Needs teacher (Mr. R) and various people who work with my son at our local Autism Centre. It was to discuss how we could help my son adjust to being in school full time, create plans of action to help him follow the routines and to brainstorm ideas on how to get him to do his schoolwork that is not high interest for him, things like sitting still during their story time and activities like drawing or printing. I had found out that day that his morning bus ride had been changed just for him. Before he started going to school, the morning bus picked the children up at our stop at 6:58 a.m. and had a very long and confusing route to the school which took close to an hour to complete. My son and our neighbor’s daughter were supposed to be the first children on the bus in the mornings, their old bus driver lives just down the road from my house. It turned out that the Autism centre decided to do what they could to get my son’s morning bus ride shortened as much as possible. Instead of being picked up at 6:58 a.m. and lasting for close to an hour, his bus picks him and our neighbor’s daughter up at 7:21 a.m. and it’s only 20 to 25 minutes to school from there, about half of the time that the old route would have taken!! I am very grateful to the ladies at the Autism Centre for doing that for Lil Etoile… I swear if they hadn’t done that, he would have been VERY bored on the bus and that could have caused a LOT of problems!! He does very well on both his morning bus ride and his afternoon bus ride, both bus drivers are always telling me how good he is and how they wish the rest of their charges were like him!!

We had also decided that a copy of the next school day’s schedule will be sent home so Lil Etoile and I can review it together the night before and in the mornings so he knows what to expect every single day. We also started a communications book so his teachers can tell me exactly how he did during each activity and if he had a meltdown, etc. Every day, I write down his afternoon, evening and morning activities, how he’s feeling (if he’s tired, not feeling well, etc) and if anything happened to him that may pose problems for him during the run of the day. If he has had problems with standing still during O Canada and the morning announcements, I will quickly write up a short social story that states that standing still and being quiet during O Canada is fun, for example. This has worked several times in the past and I am so grateful that I can do that on the fly most mornings!

Another tragedy struck our family September 17, 2010. Nanny, my husband’s grandmother and my son’s great grandmother, passed away due to complications from pneumonia and inoperable lung cancer. My son did not attend her funeral, he was at school that day, but he was asking for her several times. Since he still doesn’t understand the concept of death, we told him Nanny went to live with my old cat Birdie and they would be happy living together. So far, he’s accepted it. He still asks for her once in a long while but for the most part, he doesn’t talk about her with me.

Halloween 2010 was cold this year but Lil Etoile still went out trick or treating with his daddy and I. He had worn the same costume this year that he wore last year, he said that he “liked” it and would NOT allow us to get him another costume! Since his old costume still fit him (and was still big for him!) we gave in and let him wear it again. He got a LOT of candy from our neighbors, friends and family members and had a lot of fun! It was so much different from Halloweens of the past, when he would have a meltdown because he didn’t like dressing up in a costume.

November 2010 saw a new addition to our extended family. My sister gave birth to a daughter on November 8^th and five days later, all three of us drove the 60 miles to the Annapolis Valley to meet Lil Etoile’s new cousin and my baby niece. Lil Etoile was very gentle with her and like me, he fell in love with her within minutes. He kept pointing her out, saying her name over and over again.

The Holiday season saw more changes for all of us. Years past, we would all gather at Nanny’s house and spend the day with her, but since it was the first year that we were celebrating without her, we had to make new traditions on our own. We decided to spend the daytime at home and visit my husband’s mother and youngest sibling in the evening.  Lil Etoile really enjoyed the day, he was so excited!! He loved all of his presents, notably a multi game console from Hubby and I, and a child-sized professional drum set from Santa. He really enjoyed spending time with his grandmother and his father’s siblings, and his uncle’s girlfriend.

 January 2011 saw the holiday vacation finished and school starting again. Over the next couple of months, Lil Etoile grew by leaps and bounds and started bringing home work written by his own hand. Until he started Primary, he would not hold a pen, pencil or crayon and try to write on his own. Now our house has lots of school work done by my son, with his writing on it.

He continued to grow and learn all through the winter of 2011 and the next thing we knew, March Break was upon us. During the week he was off from school, we went bowling and Lil Etoile had a wonderful time. He even beat my score one string, which is really good for a child who is not quite seven years old… My average bowling score is about 50 or so currently (I am out of shape, it used to be a lot higher!) and his average score seems to be in the low 60s.

That's it for this year's update. I will be documenting highlights, achievements, etc and will be writing up another blog about it in the spring of 2012, which is when my next annual update is due.

~Veridian~