The Fragile X Association of Australia was chosen as the main beneficiary for monies raised at the Wynnum Spring Fair this year. We all went to Mel and Paul’s and got on a bus that took us on the parade. Mel and I along with Megan and Chloe handed out lollies and brochures about Fragile X. We had one lady come up and ask us about Fragile X and how it works in different people. She said she wasn’t aware that Fragile X even existed and considered it something that she might pursue for her daughter. By raising awareness about Fragile X and putting our names out there, we get to help at least one family, then our efforts have been worthwhile.

Mel does such a great job in leading the Queensland parent support group. Whilst I am involved and support Mel, I have a major role in the forum which is at www.fragilex.org.au  Please visit if you have any involvement with Fragile X and apply to become a member of the forum. The more members we have, the better dialogue and communication we have with different people who have different experiences.

Log onto the Fragile X Associations website and read all about it.

We have done a few things over the school holidays that have been really good. From the last post, you are aware that my Mum came up to visit us for Geoffrey’s 21st birthday party and also for Christmas. Peter, in the red shirt and Geoffrey in the Green shirt are pictured here with my Mum.

At our first Sunday at Church after Christmas, a young man asked Geoffrey how his birthday went. Geoffrey answered appropriately and conducted what I would consider a ‘good’ conversation with this person. He answered questions with clarity and did not repeat any questions. (echolalia – which Geoffrey so often exhibits) I was stood next to Geoffrey but speaking to a woman who was sat in front of this young man. I did not know this person so had Geoffrey in the corner of my eye watching what was going on. I was really impressed by his ability to conduct a conversation like this. How I explain this, with his Autism, is that church is now a familiar environment for him and people always go up to him and talk to him. Most people know now that they have to direct the conversation and most times he is responsive.

On Tuesday, January 13, we took the boys to the twenty/20 Cricket. I was so proud of Peter. He loved it… he seems to be much more a cricket fan from watching him than a footy fan. I said to Greg during the game that we need to bring the boys to the cricket as much as we bring them to the footy. Peter used lots of good manners and signed please and thank you for nearly all of the night. We praised him which he found difficult to accept.. he is quite bashful and self concious most times which we think underpins his desire to help all the time.

Today we went for a drive to Cunningham’s Gap and then looped around to Toowoomba and then back home. We went for a short walk to a lookout over the Fassifern Valley which was pretty. We then drove into Warwick, had lunch and walked around the cathedral. At Toowoomba we stopped at Picnic Point and had a drink and then drove home. It was such a pretty drive, with the mountains as a backdrop the valley and then us climbing it, and then looking down into the valley and taking photos. We want to go again, but this time have a look around Spicer’s Gap and go to Queen Mary Falls… maybe do a longer walk or a tougher walk..

Janine

It’s been a while since I have been on my blog… but there have been a number of reasons for this.

My sister, her boyfriend and her two children from a previous marriage are visiting us to help celebrate Geoffrey’s 21st birthday party.. way to go Geoffrey!

Deborah has 10 year old twins and one of them, Shawn, also has Fragile X. The boys have been really enjoying themselves together whilst my sister and her family have been visiting. We have been up to Caloundra and also to visit our new holiday house at Somerset Dam.

Tonight we had our Christmas dinner as my sister and her family return to Melbourne tomorrow. They have had the best fun….

Janine.

I am now on holidays, and in Australia, disabled people get a bonus payment at the end of June. Geoffrey and Peter got theirs. What we do, is make sure that we use some of their money to buy them something special for them both. Last year we got them their LCD televisions, and this year we bought them a Wii. They both LOVE it. Katherine, my daughter and her boyfriend came over last night and they played ten pin bowling with Geoffrey and Peter. Peter communicated to Katherine through gesture that he wanted her to help him play against Geoffrey. It was fantastic watching them interact so positively and the games are active.

Geoffrey was able to operate the control easily and picked it up quickly. Peter took a bit longer, hence wanting Katherine to help him. It was funny watching them both and listening to them in their excitement.

What a great buy.

I posted below about getting commonwealth funding to get care for Geoffrey and Peter whilst my husband is in hospital having his ankle operated on. Well the agency that we use for respite got that funding. I rang the agency thinking that everything had been arranged as they said it would be on Monday – the day of Greg’s operation only to find out that nothing had been done.

I spoke to a bloke who was filling in for our regular case manager only to be told that no notes had been left for him regarding any follow up. He stated that he had tried to ring us but with no success. I promptly replied that no message had been left on our land line nor our mobiles.  He said that he would work on getting someone to care for Geoffrey and Peter as I went to work. He then stated that the regular case worker had a car accident, so I don’t think it is fair to EXPECT her to leave notes for him to inform him on what needed to be followed up on. As one of the coordinators, I would have expected him to have the skills and the ability to link with her families and discuss what was happening?  What happened to initiative and independant practice?  Am I expecting too much?

To say the least I was NOT very happy. He then had the audacity to ask what Fragile X was. I replied with “Don’t you know about Fragile X?” and he replied no! My patience had then almost run out and said in a very curt and terse response that Fragile X was the most common form of inherited intellectual impairment and it’s incidence was second only to down syndrome. I then said “I think you need some education, don’t you think?” I think he got the message that I was NOT very happy.

It took all my restraint to not flip my lid. How could a coordinator of a respite service providing care to the intellectually disabled and their families not know about Fragile X?” I think that is very substandard and below expected knowledge for someone who is a coordinator of the service. My thinking lends itself towards how can they be expected to match the carers to the intellectually impaired clients without having a basic understanding about the disorder and it’s idiosyncrasies. I think this is very sub-standard.

What has evolved over the last two days is that the agency failed me the first day because they could not find anyone to care for Peter and Geoffrey. I had to ask my step-son’s wife to pick them up. I don’t like asking for help with them, because I have lived through a life where people have expressed high anxiety about the care of Geoffrey despite him being extremely compliant and good in care. It is very few times that he has defied instructions given to him by others.

Today, they managed to get Peter and Geoffrey’s regular carer. When I got home I asked him what he thought about this coordinator. He replied that he was alright. I then asked how much education did he get on different disorders and he replied not enough. I then told him my story and how livid I was with lack of knowledge and also not being able to provide the service they said that they could provide and also got funding for. Peter and Geoffrey’s regular carer then said, “but we wouldn’t look after too many people with Fragile X” I then told him that the DNA marker had only been identified since 1991 and that there would be a number of older clients who may have Fragile X but may not have been diagnosed because the test previous to the DNA test contained flaws and did not always provide a comprehensive response to the diagnosis of Fragile X or the extent of it within a person. It was obvious as well, that neither of them have any idea about the expression of Fragile X, in both behaviour or phenotype. I said that I would be prepared to provide some education about Fragile X and it’s associated disorders. I told our regular carer that maybe he could raise it in their next staff meeting to give me time to cool down and get a more reasoned grip on the situation.

Thankfully I have over 40 hours in ADO time so I was able to negotiate another ADO for tomorrow. We are expecting Greg to be discharged tomorrow which will then relieve the necessity of care for Geoffrey and Peter as I go to work. Normally because Greg is a special ed teacher, he takes the boys with him to work and they catch their taxi to their program. At the end of the day, Greg finishes 15-30 minutes earlier than the boys so is able to go down the street in time to pick them up and take them home.

Far out Brussel sprout – will this ever end!!! It seems that all I continue to do is argue for the boys rights and what they are entitled to. It doesn’t seem fair.

We have a little crisis this week. My husband Greg is going into hospital on June 23 to have an operation on his ankle. To manage care for our boys, he takes them to school with him and the taxi picks them up at 8.45 to attend the training program that they are enrolled in. At the end of the day, because Greg is a school teacher, he finishes work a few minutes before they do, so he can drive down the road and pick them up to bring them home.

I work as a nurse in a community health centre. My hours are not so flexible and I leave before they need to go to their training program and am home close to 6pm each day. This means whilst Greg is in hospital, I am in a dilemma.

I rang the respite agency that we go through to negotiate extra care for the boys so that I can still go to work the days that Greg will be in hospital. Generally we are allocated 4 hours per fortnight for respite which we use on Friday nights every second week. The agency applied for Commonwealth Carer Respite and thankfully we were approved for the extra funding to pick the boys up for two days and bring them home after they finish their day. We have arranged that Greg’s teacher aides that he works with, will supervise the boys in Greg’s classroom prior to the taxi picking them up for their program.

It’s a lot of mucking around – numerous phone calls, speaking clearly to people explaining what our needs are and assuring them that this is only short term whilst Greg remains in hospital. I needed to make the phone calls from work and give them my work number for them to contact me. This is something I do not normally do as I like to keep my work and personal life separate. Usually I give my mobile number as a first contact, but I can not be guaranteed to answer the phone especially if I am with clients.

I am really pleased that we have care now. It takes a load off my back trying to balance work, the boys, and also visiting Greg each day as he remains in hospital.

Thank goodness for that.

One of the fantastic things that Geoffrey did today under supervision from Greg was wash his clothes and then hang them out on the line to dry without much prompting. What we try and do is teach Geoffrey and Peter to be as independent as possible, but often it means extensive verbal input and step by step instructions each step of the way. On days like this, we try and pat ourselves on the back for all the good work that we have invested with Geoffrey and Peter’s upbringing. We also make sure we praise the boys of course, and my boys respond much more readily to praise rather than limits and boundaries about things they have not done so well.

We have also tried to teach them that if they wet their beds overnight, they won’t get into trouble if they tell us and help us put the sheets in the washing machine in the morning. I will get them to help me do it. It is a little more time consuming in an already busy morning, but at the end of the day, ends up being a better outcome than coming home to a smelly house because of wet sheets. Once we get home after work/program we put the sheets in the dryer ready for the night. Most times it works well.

At the moment, my boys have another week off because it is school holidays but my husband is home with them because he is a school teacher. He works at the Special School my boys once attended. He loves working with disabled kids and every achievement they make is a milestone.

My daughter’s boyfriend also likes Geoffrey and Peter and did what every boy does when waiting in the car for us to finish shopping – farted in the back seat. Geoffrey will laugh at farts at a drop of hat, and any joke that involves farting is comical to him. Katherine was disgusted and couldn’t wait to get home to stop her boyfriend from egging her brothers on!

Boys will be boys…

Today was really busy for us. Firstly Greg and I went into the city with Greg’s mum to see a matinée of The Phantom of the Opera. It was spectacular. They lifted the chandelier above the audience and then guided it as it fell to the stage in the musical. The boat scenes underneath the theatre were fantastic. The cast were all fantastic and the costumes were colorful and opulent. Greg originally didn’t want to go, but did and won’t say how much he enjoyed it.. but I know he did. The singing was great and it was well worth the money to go and see it. Becaue it was a matinée, the major stars of the cast did not take their roles, but we did not miss out in any shape or form. The understudies that played the lead roles were all superb and we had the privilege of listening to some up and coming and also established names in the musical industry.

We got home with only 45 minutes to spare and we were out the door to the Queensland Reds Vs. The Bulls Rugby Union Football game. This time the boys came with us. Greg already had a QR scarf, so we bought another one for Geoffrey. He loves any footy, but with his autism quickly becomes over stimulated and tonight he didn’t fail me. Geoffrey is extremely good, until we have to exit the stadium to which he becomes very anxious and resistive. The reason is because as we enter and exit the stadium, it looks as though we are high up as we look down towards the sports ground. I usually manage it with a reassurance, then a limit, and then a forcible tug to get him moving behind me – telling him not to be so silly, he’s 20 and making a scene for himself. Sometimes it can be difficult when he digs his heels in, and tonight he was pretty stubborn, so I needed to have a good hand on him. When we finally get to the top, which is only about six rows behind us anyway, I aks him how silly does he think he was. He usually says that it was a bit silly, until the next time that we do this. We want to take the boys to a Brisbane Bronco’s game and then if we can, get tickets to a state of Origin game that is played up here in Brisbane. Both boys will love it, I just need to remember how autistic Geoffrey can become in his over stimulation!!!

Oh the joys of Fragile X.

Peter turned 20 on March 8. He had such a lovely day. He got the new Brisbane Bronco’s t-shirt he is wearing in his birthday photo’s. They are now uploaded onto Flickr, so please take a look.

We planned a birthday BBQ for him and invited dear Christian friends who enjoy interacting with Peter at church. He had a great time, helping Greg cook the BBQ and doing chores. He loved his birthday cake, a yummy Bee Sting Cake from the Cheese Cake shop. I also made a Pavlova for him. What we didn’t eat on the night, I took to church the next morning for morning tea. We didn’t want it, and it would only be a temptation for me and I didn’t want that.

We had a few kids come around, Matthew, Bryn and Gabe, Melissa, Matthew and Stephen and baby Johanna. The adults enjoyed themselves as they talked with each other. It was a busy night for me, making salads and preparing the deserts, but it was wonderful for Peter, and it looks like her certainly felt special…. the way it was meant to be.

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…..