Frustrated.

We had an email last night from the program that our boys go to, letting us know that the program is closing for a week over Easter. Normally that is not a problem, because usually the school holidays coincide. However, this year they don’t because Easter is falling early – 22 to 24th of March. The School holidays commence at the beginning of April. As my husband is a school teacher, it means that neither of us have planned any leave over this period of time. I guess it means that I will have to take four days off to care for Geoffrey and Peter, that I hadn’t planned for. Geez – I’m annoyed.

I wonder if this is an oversight, or if it is intentional, because many people will have planned their annual holidays for the year. Unfortunately, I don’t have the luxury of being able to stay home and care for my family – I wish I did, sometimes it’s all I pray for… the ability to have the choice to not work.

Anyway that’s my gripe for this week…..

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How my Christian Faith helps me.

I became a Christian the week before 9/11. I am not sure of the significance of that, but since then my life has turned around ten fold. I have moved from being a single mum to being married to the most wonderful guy on earth. We met on a Christian website and despite knowing that Geoffrey had Fragile X, still had the heart to pursue me. We married and our life has built up from that point on.

We then decided to offer Peter a home. This has been one of the best decisions that we have made in being together. We often wonder about God in our lives and what he puts before us in our path. Well, if I hadn’t married Greg, we would not have the lifestyle we have today, Peter would not be in our lives, and there is no telling where he would be now if he hadn’t come to live with us.

My faith places a calming influence on me, and both my boys chose to be baptised in September 2007. I look at Geoffrey and Peter and hear Geoffrey singing his heart out in church and Peter lifting his arms in praise. Even though they are intellectually disabled, through this I know that they have their own relationships with God.

They always feel comfortable in our church environment, and people as they have come to know Geoffrey and Peter, have learned about their strengths and abilities. Peter shows his caring of people by helping them. Today after lunch, he helped fold up the table cloths and always likes to put the fold out tables away. Peter often will raise his hands in praise. Geoffrey on the other hand, can have a limited conversation with people. When in the mood, he will talk to anyone about trains, planes, F1-11’s and star wars. People will ask Geoffrey what he and pete have been up to and how swimming went and what did they cook this week. Geoffrey can be heard singing at the top of his voice, some of our hymns and worship songs, and he particularly likes the ones that we clap to.

We have encouraged people to approach  the boys outside of our support, so that other adults in the church can have unique relationships with both Peter and Geoffrey on their own terms and without the involvement of us. I know some of the older women will go and ask Peter to do something for them, we just have to watch out to make sure he completes the task. I remember once he gave me a jar of the most delicious lemon butter that one of our ladies makes. When I inquired, he was meant to give it to another of our ladies, but he had given it to me.  At least he got to the general direction he was meant to, because I was actually standing just near her.

We love our church, and we love the people in it. It is so special in that the people who worship there, accept Geoffrey and Peter for who they are, not on account of their disabilities. We won’t be leaving in any hurry.

My Tired Boys

Today has been  big day. I conducted Worship at church today, and then we had lunch followed by the AGM and then a General Members meeting. Our church in Sunny Brisbane is very social justice focused with a catchment of inner city dwellers as well as people who drive a reasonable distance to get to the services, like us.

Our discussion took place around our thrift Shoppe, which draws in a healthy number of people from churched and unchurched families, and we were talking about how could we show the character of God to different people,¬† but particularly the unchurched people.¬† We don’t want to shove the scripture down the throats of people who don’t want to listen, but when they approach of their own accord and ask how have we got what we have, that we have well thought out responses and the ability to assist people out of their despair and disempowerment. We run TESOL classes, we support a number of missionary organisations and we also support some of our own church family overseas, in the Philippines, Canada, Ethiopia and also in central Australia. We come with practical skills, teaching people to teach their own community and giving them resources to be independant rather than giving time limited ‘hand outs’ Our desire is to upskill them in their own country and within their own customs rather than us trying to change their beliefs and the way they think about the world.

Pete and Geoffrey are exceptionally good during these meetings. Geoffrey was so good, he fell asleep for the most of it, on one of the couches at the back of the room. I told the Pastor he was so interesting, he had put Geoffrey to sleep. Only joking of course! It is really heart warming to know that both Geoffrey and Peter feel comfortable in that environment, that they relax and fall asleep. Peter loves to help, so he helped fold the table cloths and then put the fold out tables away. We forgot to take his medication. He normally gets more agitated when we forget over the weekend, but in a contained and structured environment, he copes really well.

Geoffrey again sung his heart out in church… and I think he was especially chuffed because I was leading. I had picked songs relevant to the message being preached this morning, some of which Geoffrey knew.

Since coming home they have been in their rooms watching their tele’s. Greg has the cricket on – Australia Vs. India.¬† Both Geoffrey and Peter enjoyed tea – an easy one because of our big lunch, cheese jaffles. They love them.

Katherine starts her new job tomorrow – she has to look after an Autistic girl who is 2 years older than her. She’ll be fine. She is very good with her brothers and eventually she wants to train in Early Childhood Teaching with a second specialty of Special Education. I have told her to continue with her guitar lessons, because being able to play the guitar to the little kids would in an invaluable asset to her.

I think it is going to be an early night for all of us tonight.

Early in the morning…

Ahhhh….¬† I can’t sleep.

I have been trying to upload more pages on the Fragile X online site, but even though I have written the page, can’t seem to get it published on the site. I will have to ask Sue, the co-founder of the fragilexonline site. She is much cleverer than me, and knows heaps more about building web sites and having blogs. I have learned so much from her since we have started this project.

I have been browsing around the internet, and Sue put a Fragile X web ring on the site. Curiosity  overcame me and I went to have a look and discovered a number of mums who have published their own blogs about their families and also living with Fragile X. I joined.

Life is busy… work is starting to pick up – at long last and life in general keeps us occupied through most of the week. I go to a prayer group on a Monday evening before I go home and on Tuesdays I have been going to a support group for people who have had lap band surgery. I have lost 15 kilograms to date, but am starting to struggle. I couldn’t do this if Greg wasn’t around – God bless him, so it’s Wednesday before we can actually sit down and have some quality time together.

I wasn’t going to bring my Christianity into this blog, but have decided to because sometimes it is only that keeps me sane and focused. I had a little cry at work over Fragile X at work this week, but thankfully I was talking to someone who I have worked with for nearly two years and is understanding of the issues that Fragile X brings with it. I am only human.

The boys are going fine this week. Peter is over his little¬† ‘accidents’ although I must remember to keep an open mind around him and look for anything that might be going astray for him. He has been quite emotional over the last few weeks since recommencing his program. Normally we can joke him out of his distress, but he has been a bit more fragile over the last few weeks.

Geoffrey talked to me about standing underneath a bucket and it spilling water over him. I didn’t get it, and we have to fill in the gaps to figure out what he is talking about. We finally discovered he was talking about swimming and he told us Peter stood under the green bucket and water spilled over him.¬† Sometimes my brain just does not function, especially after tea on a Friday evening and I am looking forward to two well earned weekend days off.

Anyway, thats about all for me now….

Pre-school days.

When Geoffrey was 4 years old, he entered pre-school at the local kinder in our town. We applied for funding to get him an integration aide, but because some of the parents on the selection panel did not know what Fragile X was, his application was discarded. We have to remember that in these years, Fragile X was less known that it is today. Even with medical doctors, when they read that Geoffrey had Fragile X, I was asked to explain what it was, what it meant for Geoffrey and then also the impact that it had on my family. At times I found this frustrating.

Early Intervention.

With Geoffrey’s diagnosis came all the Early intervention routines.

Firstly we attended Noah’s Ark in the outer eastern suburbs of Melbourne. This entailed a 30 kilometre drive from the hills of the Yarra Valley to the venue where the playgroup was held. We enjoyed this, well I did anyway. We spent lots of time singing nursery rhymes and playing with our children. The kids got to play instruments in a circle and Katherine was able to attend as well as Geoffrey’s sibling.

We then broke up into individuals where we assisted our children to go through a range of exercises. The premise of this was that intellectually impaired children need to be taught skills that able children generally pick up by observation of their parents and other significant adults role modeling.

The playgroup was once per week and it was something that we looked forward to each week. I think that this gave me an avenue as a mum to get out and meet other parents. I also interacted with the therapists that ran the play group and assisted the group leader. They offered support as well as helping us to teach our children. Because Katherine was so young when we started, at times I needed to feed her. I felt embarrassed about breast feeding in public and there was no room that I could go to have privacy whilst I did this, so I very quickly put her on formula. I think also my own stress levels and demands on my time and energy made bottle feeding so much easier for me. From this experience I find it difficult to hear others strong opinions on Breast feeding Vs Bottle Feeding. It’s my own personal experience that it is the mother’s choice and what suits her, her child and also her circumstances at the given time.

We then also went to the local special school that ran an early intervention program on a 1-1 basis. This was time that Geoffrey and his therapist had together where his therapist taught Geoffrey and exposed him to different tastes, sounds, textures and environments. At first they asked me to stay with him because he was so young, but as they got to know him and Geoffrey became comfortable with the environment, I was asked to leave and have some time to myself. It was difficult though, because I had no girlfriends with whom I could meet, and I also had Katherine with me. We would often go to the local shopping centre and window shop, because being on the sole parents pension, I could little afford any luxuries.

As Geoffrey grew older,¬† he joined a group program at the special school where they emulated a kinder environment… teaching the kids skills that they would need as they entered Kinder. This group ran twice a week. On top of that, we attended a local playgroup in our community. That meant that I was out four out of five days, and made my life busy as a mother of the disabled kid. I was never home and the petrol costs that I had to pay out to drive Geoffrey to all these programs was very expensive. As such, I often left myself to last. This is where I put on my weight. I was very tired at the end of the week, and what I struggled with most, was people assuming that I would not like to go out because it would be too difficult for me. The invitations were never extended to me. I got really angry because I thought etiquette would allow me to either accept the invitation or decline it as necessary.

Geoffrey enjoyed going to all these programs. He joined in and played alongside all the other little kids. Because he had associated autism, I had to seek out cuddles and eye contact but when he did connect, he did it with such affection. With the people whom he loved and knew well, he was very affectionate but with new or unknown people was very shy and would hide behind me or his Nanna.

Diagnosis.

We learned about Fragile X when my son was 19 months old. We weren’t aware that our family were carriers for Fragile X so the diagnosis actually came as a surprise for us and completely out of the blue. None of my extended family have any learning disability, let alone intellectual disability.

Geoffrey was my first child. When we were still in hospital after his birth, one of the nurses said to my parents something about something being wrong, but did not say what or take it any further. We were confused by this statement, and I only found out about this after Geoffrey had been diagnosed.

With Geoffrey being my first child, I did not have any other children to compare to, to be aware of delayed milestones or anything being wrong. Whilst Geoffrey could not feed properly and did not have a developed suck response, I was totally unaware that this was an indication of something more significant to come along.

Life was pretty ‘normal’ in the first year. I went back to work as an Enrolled Nurse when Geoffrey was 6 months old and although slow, he did respond. He was such a happy little chap and would respond to our silly antics to make him laugh. He loved being bounced on our double bed when he was just over a year old and would scream in delight and laughter. He had an infectious little laugh which delighted all around him

When Geoffrey was 1, I fell pregnant with my second child. It was during visits to my local doctor that the issue of disability was raised. I had gone because both Geoffrey and my then husband were sick. I was also not very well, but we couldn’t afford the doctors fees for the three of us, so my husband and baby were attended to. The doctor we saw was concerned about my state of health and questioned me about Geoffrey’s developmental milestones. I remember it was a pretty vague conversation with me experiencing some confusion over why these questions were being asked.

I went back to the doctor a little later on, and saw my regular doctor. I became frustrated with him and asked him why everyone was asking me all these questions. He pulled out his pediatric book and asked me questions relating to all the milestones that Geoffrey should have reached at his age. I remember only answering positively to one question. With that, he referred me to a paediatrician who ordered blood tests from both Geoffrey and I. He questioned Fragile X and I am not sure what indicators were present for him to think of this, given that there is no family history of it in my living relatives.

The blood test came back approximately 6 weeks later confirming the diagnosis of Fragile X. At the time I was seven months pregnant with my daughter. The Paediatrician then went on to give an overview of genetic counseling and the various options. I was shell shocked. Numb was a description that I could apply at the time and whilst everything seemed to be going over my head in a blur, I remember the conversations word for word.

Katherine was born on August 24, 1989. Whilst in hospital the Paediatrician came to the bedside saying that he needed to take a blood test because she could be affected as well. I think this is when I realised the effects this disorder would have on our lives. I was also angry with the Paediatrician becaue he came and dropped this little piece of news in my lap whilst I was in hospital following the birth of my second child, and never actually sat down to comfort me or talk about how I felt about this news and how I was feeling. Whilst I thought he was a very good Paediatrician as far as the kids were concerned, I thought his bed side manner was appalling and very sub standard.

With this news came the rounds of early intervention. This had commenced prior to Katherine’s birth so we were in the midst of establishing new relationships and friendships that revolved around disability. What distressed me most in that environment, was that all the mum’s with Downs syndrome children tended to draw together, and often I felt like I was the one left out. No one else had a child with Fragile X. When people asked about it, it meant a lengthy conversation about the disorder, it’s transmission and also the potentials for any future children to have it. In amongst all this, my marriage broke down. I don’t think that either of us were to blame, we were both dealing with very changed circumstances and views in different ways. I also think that both of us were depressed but whilst I sought help for mine my ex-husband at the time drew to spiritualism – something that I am totally against as a Christian. I was scared about his involvement in this organisation, and also I gained the perception that they did nothing to help repair our marriage when we finally separated. Katherine was seven months old at the time.