Monday, December 8, 2008
Tuesday, December 2, 2008
It was also the date when we received a diagnosis of atypical autism (also referred to as PDD-NOS) for Roo.
For some time I have thought that if he is on the autistic spectrum, that would be the most likely diagnosis. However, I was hopeful that his difficulties were the result of a more general delay.
At the moment I am still processing what the diagnosis means for our family. I want to push the pause button on our life while I sift through the implications and emotions. Strangely , this diagnosis doesn't feel as difficult to comprehend as Koala's diagnosis of Aspergers. Perhaps because we have been here before and know some of what's coming.
I'm trying very hard to not feel sorry for myself, and sorry for the reshuffle of my dreams for Roo and his education. I'm trying really hard not to feel cheated when I hear about other 4 year olds who are starting to read; joining in on the home school gymnastics class; talking non-stop, in short, just being normal 4 year olds! It hurts.
I don't want to be here in Holland!
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Monday, December 1, 2008
The Cat Chat Advent/Christmas CD was dusted off, and the Advent wreath was set up.
Unfortunately I am not as organised as I would like to be. Therefore, my candles are not new as they should be. But at least the wreath was in working order when the time came for it to be put into service.
An Advent highlight for Bilby and I, is reading The Jesse Tree . This is a must have for every family! Opening it on the first Sunday of Advent is like welcoming a much loved friend after a long absence. It is so beautifully written and engaging. I really enjoy putting on the gruff voice of the old carpenter at the beginning of the story, then allowing his voice to soften as we edge closer to Jesus' arrival.
This year we have decided to try our hand at making a modest Jesse Tree. True to form, I have yet to find the "tree" to hang our hand coloured symbols.
This Advent I feel as if we are entering more fully into this special season in the church calendar. I feel so very blessed to be part of the Catholic Church and to be able to celebrate her rich traditions.
Wednesday, November 12, 2008
He has started spending Thursdays with Grandma. Every morning he asks in his own little way, if today is Grandma Day! She picks him up in her car and they spend the day together. A highlight of the day is the return journey on the train!
Today I asked him if what special things he had done with Grandma. I was expecting not to get an answer. Usually Roo simply attempts to repeat back what he has heard, but today was different. For the first time he answered a question in an appropriate way! I asked had he done anything special with Grandma. He replied "Milkshake." I became very excited, which earned me a very cute, shy smile.
"What else?" I asked.
"Washing machine." said Roo. My Mum has a front loading washing machine which Roo loves as he can see the clothes spin. Roo has always loved anything that spins or can be spun: fans; straws; wheels; anything!
Roo's language has improved noticeably of late. We still have a very long way to go, but I now know that he will get there!
Tuesday, October 28, 2008
I was recently thinking that perhaps I could invent a new type of home education category that would fit in nicely with year round home education. I would like to home school 3 weeks out of 4, and call myself a "Pre-menstrual Homeschooler." I think it could catch on!
I'm just joking by the way!
Monday, October 27, 2008
I had assumed that this would be the only gift of significance from my family. I knew that Koala had wanted James to take him to the local “cheap shop” to buy me a little something. Judging by the shape of the gift, I assumed that I was about to unwrap a print of a puppy; flowers or the like. I was delighted to find that I had a postcard size print of Our Lady of the Southern Cross, in a lovely frame complete with a white mat.
Koala had found the print on a "please take" table at church, and wanted to give it to me. James suggested that they frame it for my birthday. Had I asked for another gift, this is exactly what I would have chosen!
Our Lady of the Southern Cross was commissioned for World Youth Day 2008. It was painted bu Paul Newton, and hangs in the beautiful St. Mary's Cathedal Sydney.
Tuesday, October 21, 2008
Why we Home School.
To fulfil the responsibilities given to us upon our children's baptism.
To provide our children with a comprehensive Catholic education and worldview in all areas of life and learning.
To provide an individualised education in an environment of respect and loving parental care such that each child's strengths are appreciated and raised up and each child's areas of challenge are accommodated and or remediated.
To allow extended parental influence, particularly in the early years of character, values and attitude formation.
To protect our children from the pervasive impiety in our culture and educational systems in order to facilitate the development of the whole child.
To encourage social developments across contexts and ages.
To reverence the child by careful attention to their uniqueness.
To offer emotional safety so their energy can go toward froth and not fear.
And above all because we love being with our children.
I had tried many times to compile such a list, but I could never quite get it right. Marcia’s list included all the reasons which were close to my heart.
The boys and I have recently started reading Blessed Teresa of Calcutta, Missionary of Charity. We read how Agnes tried to discern if she had a vocation to the religious life. She ask her confessor how she would know if God was really calling her, and if so, calling her to what? The priest’s reply struck a cord with me.
“If the thought of becoming a sister and serving God and people makes you happy, then your vocation is genuine. A deep inner joy is like a compass that points you in the direction God wants you to go. This is true even if the road for you is difficult.” (page 24)
I shared with the boys that for many years I had repeatedly asked myself and God what I was meant to be doing with my life. Should I continue teaching; pursue further study; look for another career; save the world! After a few months of home education I began to realise that I no longer found myself asking what I should do when I grew up!! I knew that God had answered my oft asked prayer, as I experienced a lasting contentment which had been elusive in other ventures like paid employment and study. I knew that my vocation to home education was genuine as I too knew by my feelings.
My passion for home education has not wavered (much!), even when the road becomes difficult as it inevitably will no matter what ones vocation is.
What was also lovely about this happy affair, was that Bilby, Koala and I spent some time together in prayer after I had spoken to the director. They were able to see God working in our lives through our prayers.
Friday, October 17, 2008
My dear friend Leanne has been helping me out by taking Bilby to a home school sporting activity. During one of the drives the conversation turned to chivalry. Ever since Bilby has taken great care to open all doors for his friend Brid, Leanne and myself. It certainly warms a mothers heart!
Wednesday, October 15, 2008
At the beginning of the school year I had what I thought was the perfect plan for the year which I had loving laboured over for many months! I have always been a devote of creating timetables, and schedules, many of which were rarely used, but I had spent so much time on this one, that I was sure it would be different. Our youngest Roo, was three and a half, and I reasoned that things would start to improve as he was older and because I was sure that his language would begin to blossom. We had none the less decided to take him to a paediatrician, just to be sure that his lack of language was simply that, a language delay rather than autism. Before the visit I occasionally wondered how I would react if the paediatrician thought that he did have ASD (autism spectrum disorder) or some other nameless problem. As I was fairly confident that this wouldn't be the case, I figured that I would worry about that if it happened.
The visit did not go well. The Doctor thought Roo was not simply slow to develop language. She noted his non-functional play, which I was shocked to realise, I had failed to even notice. Roo displayed his normal fascination with light switches and pushing buttons. This of course had slightly bothered me, but as it wasn't obsessive I had wasn't too worried. The Doctor talked about her concerns that he might have ASD, but that she would conduct a more through screening in 6 months. She believed that Roo was showing signs of Global Development Delay. I left her rooms feeling numb.
Roo and I went to a nearby fast food outlet for a play, and a much needed coffee for me. Unable to hold in the tears any longer, I sat inside a piece of the play equipment and sobbed. When Koala was diagnosed with Aspergers, it was a relief to finally be able to put a name to that which we knew, made our son different. But this came right out of left field. As I knew a little more than the average Joe about autism, I reasoned that Roo couldn't be on the spectrum because he had great eye contact; he didn't have meltdowns; he displayed no glaring sensory issues and so on. So I reasoned that if was more than likely not ASD, it must just be a speech delay.
So my carefully crafted plans began to slide as I started to come to terms with the possibility of having a second child with special needs. I already knew that Roo's lack of language was an issue, I just hadn't realised how much of a challenge it was going to be. I slowing began to understand that he wasn't just going to start talking in sentences one morning! As I dealt with speech therapy, early intervention and so forth, I slowly began to strip our home education plans down to the bare essentials.
I shamefully began to realise that in planning what I thought was the perfect academic year, I hadn't left much room for God. I was leaning to heavily on what I wanted without stopping to think that perhaps God had other plans. I had foolishly thought that this year would be wonderful as I had dealt with Koala's diagnoses, successfully brought him home from school, and now I was ready to settle into an uneventful year, following my beautiful schedule complete with Latin, French, Shakespeare and so on! I felt like the Lord was gently tapping me on the shoulder saying "There's no such thing as a perfect year. Let me help you my child."
Roo has had a great year, thus far. At the beginning of the year he was unable to put two words together without them disintegrating. He is now able to put three, sometimes four words together, in such a manner that those closest to him are able to comprehend his meaning. I feel confident that he will indeed talk as other children do, it will just take a lot longer!
I am now beginning to learn, and accept, that our family bears little resemblance to most other home educating family I know. I would like to attend more home education events, but I know that for now we have to limit what we are able to do because of Roo's behaviour. I'm learning to relax my dreams and expectations of Roo's education. He will probably attend school for a few years. It's not what I thought would happen, but I'm learning that sometimes "what we recon, and what we get aren't always the same thing!'" (That's a quote from the movie "Romulus My Father.") I'm learning that living in a family means that one must juggle the needs of every family member, and if that means a mix of school and home education, then that's what's best for us at this time. Most of all I'm learning to lean more on the Lord and to trust that he has everything under control. I'm attempting to leave the meticulous planning to Him!
Monday, October 13, 2008
Mum, generously decided to collect Bilby and Koala and take them to "the farm" to see the new additions, and to watch the vet at work! Consequently on our first day of the new term, we didn't achieve everything on our list, but they were able to experience something which I'm sure few schooled children would have had the opportunity to witness, at the drop of a hat.
Monday, October 6, 2008
At the age of 12 I was fortunate enough to go on a holiday to Europe with my parents. One of the stops on our bus tour was Lourdes. We were only able to stay for a few hours, but I believe that that short visit has had a lasting impact on my faith journey. I was in awe of the place. I bought a Rosary and a little book about St. Bernadette and never forgot what my soul experienced that day.
As I went through the teen and early adult years the secular world took over. I still attended Mass, even if irregularly, but I followed the world’s plan for my life, not Gods. This was probably because for the most part I was ignorant of that God wanted to offer me. From where I stand now I look back and wonder how things may have been different had I met Jesus then, and known the whys behind all the you shall nots.
When I was 22 I met James and we fell in love. Within weeks we had informally decided that we would be married. On the day we looked at engagement rings I sat him down and told him what I wanted from marriage. I told him that for me divorce was not an option. I wanted to be married in a Catholic church, and I wanted any children we would be blessed with, to be baptised in the church and to attend catholic schools. Even though James was not Catholic and had for the most part been raised in a secular home, he was willing to go along with my wishes. We were married in a nuptial mass and started our life together.
Six years later we had two boys, and I was still attending Mass every other week but a little unsure if I should be there. I had difficulties accepting the church’s stance on contraception, but was not curious enough to find out why it took such a firm stance. I occasionally considered jumping ship and attending an Anglican service but didn’t feel comfortable actually doing it!
For some time I had noticed something on the bulletin called a Celebrate Love weekend. It was advertised as a weekend for committed, loving couples, exploring sexuality in marriage. My mum encouraged us to go, and as she offered to baby sit our 4 and 2-year-old sons, we decided to go along. Not without some hesitation on James’ part. He was somewhat fearful of there being an attempted conversion agenda!
Without my knowing it walking into that Celebrate Love weekend was the start of my own conversion. Not only did I start to understand why it was that I was so adamant that out marriage was for life, but other things became clearer to me. I began to see that God wanted to be a part of EVERY aspect of our marriage and my life. As I got to know the presenters and the helpers on that weekend I saw the body of Christ in action. The love those people radiated was palpable. I wanted to be a part of it. I began to see that perhaps the church had something to offer me. Maybe it wasn’t just full of older people.
But perhaps the most life changing thing on that weekend was when one of the presenters included references to natural family planning in her talks. I’m sure my mouth was open in disbelief. In my ignorance I had assumed that NFP was for ignorant, uneducated women who blindly towed the line. But here was a highly educated, dynamic young women who believed that contraception was not ok. Without her knowing it she challenged me to look deeper. That week end and in the weeks and months to come my misconceptions about church teachings began to crumble under my newfound curiosity. I began to read and listen to speakers who explained why the church was against contraception. And it just made so much sense. The Holy Spirit was certainly at work, but I still didn’t know it.
I began to seriously consider if I wanted to really become a Christian. For me it was no longer enough to just turn up at Mass and then go home as before. I decided to make a decision to either leap in or bail out. So I started asking myself and others who Jesus really was and what he wanted to offer me. I asked a priest, family and friends some difficult questions. I listened to several tapes by Fr. Richard Rohr, and I started to understand. Joy began to leak into my heart with each new piece of truth I took in.
One book I read called "Why I’m still Catholic" made a real difference. In it many women shared their reasons why they were Catholics and what they loved about their church. In the first few paragraphs of almost every story they mentioned the same word, the Eucharist, the Eucharist, the Eucharist. To my embarrassment and disappointment I realised I had almost forgotten about Jesus truly present in every Catholic church. Intellectually I understood about the Real Presence, but only from a childish perspective. As it began to sink in I was blown away! It changed everything.
Another book I read represented another turning point. "Frozen Earth, Healing Fire". It was all about Lourdes and other placed where miraculous healing had taken place. Those stories profoundly touched my soul. If I accepted the healing hand of God was at work in the people I read about, then nothing could be the same. How could I be the same when I had proof as it were that God was real and that he was trying to shout it to the world with these healings and Eucharistic miracles. I had to take notice.
So my re-version is more of a drip, drip, drip affect than a thunderbolt. I desperately wanted and prayed for a thunderbolt, but I guess God knows best!
Since I have accepted Christ, it’s as if He’s turned the lights on! I understand why I’m here, life has purpose, meaning and beauty. Even in those moments when my old doubts surface, I still have His peace, and I wouldn’t give that up for anything! In the difficult times I know that he is with me and that all things will work together for good. I’m still searching and wanting more, but I also know that He loves me just as, and just where I am.
Incidently, James decided to enter the church when our youngest son was baptised! Through our involvement in Celebrate Love, James began to wonder what it meant to be a Christian. He met Jesus in the people we began to mix with. One of whom, after many months, was brave enough to come straight out and ask James, "So when are you becoming Catholic?" This was the push James needed to ask himself the same question! What followed were many conversations with family and friends, about Jesus, the church, the Bible and so on. You can imagine what a wonderful celebration we had to mark James and Roo's entry into the church!
Saturday, October 4, 2008
Before leaving I did my motherly chore of asking my son to be careful, to which I received the bored response of "Yes Mum." James then commented that I wasn't silly enough to ask them to come home clean! This is how they looked on their return.
Boys! Who'd have them? Me!
Thursday, October 2, 2008
I had taken pains to explain the importance to thanking Jesus for the gift of the sacrament and saying his penance in a prayerful manner. I had told him that we say our penance in front of the Blessed Sacrament right after we leave the confessional. I hadn't taken into account Koala's literal interpretation of language. Upon leaving the confessional he began to mount the steps of the sanctuary, to say his penance directly in front of the tabernacle!
Koala loves going to confession. My prayer for him is that this passion for the sacrament will not waver.
Wednesday, October 1, 2008
Homeschooling was something I had always been interested in, but I did wonder if I would ever have the patience to actually do it! But as our son who was in year one, began to show signs of struggling academically and generally being unhappy, we started to consider our options more closely. Noises were being made by teachers that Bilby needed to be tested for learning difficulties because he rarely finished his work and was easily distracted. This unsettled me, as I didn’t want him to be labelled when he was so young. I also knew that most of his difficulties could be attributed to the distractions inherent of a teacher student ratio of 1:26.
I was also disappointed that although he was attending a Catholic school, very few of his classmates attended Mass. Good friends of ours with a child the same age as Bilby told us that when their daughter gave a speech about the rosary, she was ridiculed by some children. Alarm bells started ringing. Incidentally this family have also decided to homeschool. We wanted our children to be immersed in their faith and not have to feel like the odd ones out for living a Christian life.
I lived and breathed homeschooling for six months before I was willing to make a firm commitment. This was such a huge decision for all of us that I didn’t want to rush into it only to throw up my hands and quit in term one. For me this would be a permanent decision, and I wanted to be as prepared as possible.
After much angst we decided to bring Bilby home right away rather than wait and see if things improved. I was very apprehensive, but also extremely excited. What excited me most was the faith journey we would take. Like many of my generation who are Catholic and had been educated in Catholic schools, there was much that I was ignorant of. My faith had recently begun to blossom after having attended a Celebrate Love weekend with my husband, and a Cursillo weekend. I had finally made a conscience decision to leap into my faith. I knew that homeschooling would only deepen my commitment and understanding of my faith.
And so our journey began. For the first time in my life I felt like I was exactly where God wanted me. After years of trying to find my place, as it were, I was deliciously content. Swimming against the stream had never felt so right.
We had made the decision to bring only one child home. Our second son Koala had just started kinder and loved every minute. We had two reasons for keeping him at school. The first being that he seemed to enjoy it so much, however the second reason troubled me a little more. I just didn’t think that I would be able to cope with him all day, every day. Koala had always been more of a challenge than our two other children. He was very easily upset and was generally a hand full. As time progressed things seemed to get worse rather than better. So it was easier to have a peaceful day and send him to school.
During term two I approached Koala’s teacher to inquire about his behaviour at school, as he had become quite difficult at home. She reported that he was an angel at school, but that she had noticed some things that were concerning her. I casually commented that I often wondered if he was autistic, but would then dismiss it because he did do so many things that autistic children could not. Her next comment marked a turning point in our lives.
" He’s certainly not autistic, but I have wondered if he could have Asperger Syndrome."
When he was a toddler, I had had almost the same conversation with a friend who was studying to become a teacher, but I had taken no further action. Now it could no longer be conveniently forgotten. We no longer had the luxury of thinking that he was just a little more eccentric than other children.
What followed was the most difficult year of my life, thus far.
I began to read anything I could get my hands on about Aspergers. I instantly recognised Koala in the descriptions of Aspergers. This gave me both a sense of relief and fear. Relief at the possibility of finally getting some answers and concrete help for our little boy, to intense grief at the loss that Aspergers then represented to me. My faith gave me strength, as I firmly believed that the Lord would not have given us Koala if he didn’t think we could do a good enough job! Even though I came close to doubting his choice at times.
Both my husband and I drew great comfort from a close friend who prayed with us during this time of waiting. Each of us had a strong feeling that Jesus had a special plan for our boy. We could picture Jesus tenderly embracing Koala, and surrounding him with his divine love. This image gave me great strength at my lowest points.
Koala was diagnosed with mild Aspergers three days before we embarked on a 400km move! The roller coaster ride began. We finally knew why he wasn’t like other kids, which helped us tremendously in parenting him. With each new book I read I began to feel as if I was getting to know what made my son tick. However, reading those books was very difficult. Every time I encountered the word "disability" I physically recoiled.
At home things steadily got worse. Koala had intense meltdowns. He would scream, throw things and hurl verbal and physical abuse at all the family. I still bear a scar from one of his meltdowns during Mass. Most Masses were a complete disaster. I often wondered if our family would be able to withstand the difficulties that Campbell’s behaviour presented. There were many times when James or I would have to leave the room during a meltdown to weep. We even lost who we thought were close friends because they were unwilling to accept that Koala’s behaviour was the result of Aspergers, not poor parenting.
Despite these challenges thoughts of homeschooling him were still constantly on my mind. Most of my conversations with close friends would soon turn to this topic. I’m certain that I bored them to tears, although they were gracious enough to listen to the same concerns time and time again without complaint! I couldn’t imagine how I could possibly bring him home and manage in safety. But I also knew that many people did homeschool Aspergers children and reported that their children’s behaviour dramatically improved as a result.
As his behaviour deteriorated, and my confidence in homeschooling and my understanding of Aspergers improved, I began to think that things couldn’t get worse even with him at home. We were ready to trust what others who had been down our road had said. That it would be easier. We decided to try homeschooling him. I was learning to trust in my abilities and to lean on the Lord. The Scripture "I can do all things in Christ who strengthens me." often came to mind. All the same I was scared witless!
Koala has been home for three terms. It would not be an exaggeration to say that we have a different child. The meltdowns have all but ceased and he no longer chews his clothes or become physically ill due to anxiety. The anxiety of the school environment was undoubtedly the cause of his negative behaviour. He was able to hold it all together at school, but once home, he released all the anxiety that had built up over the day. He is now a happy little boy once again. One regret I have is that we didn’t bring him home sooner.
I am now at peace with his diagnosis. Many of the things we dearly love about Koala can be attributed to Aspergers. He looks at the world in a unique way. He has a wonderful sense of humour.
People with Aspergers are very literal in their interpretation of language. Upon asking Bilby to keep an eye open for something, Koala asked if he could use two eyes! Or another time when I was purchasing a coffee, he asked why there were three different size cups on the counter. After explaining that coffee was a drink for grown-ups and that they were the three sizes you could buy, he asked if the smallest cup was for short grown-ups!
His intense (some would say obsessive) interest of the moment is penguins. Consequently we all know lots about penguins. We also share our home with 15 or more toy penguins of varying size!
I share our story in the hope that it may encourage someone who is considering homeschooling a child with special needs. Often these are the children who most need to be educated at home, away from the bullies and pressures of school. As parents I think we need to believe that we are the experts when it comes to our children. We also need to trust that if the Lord places something on our heart, that He will give us everything we need to fulfil His perfect plan for our lives.