Miami

Every two years the National Fragile X Foundation in the US hold an international conference. The city in which this conference is held changes each time and this years it is being held in Miami. We are going for the first time – to hear what research is being focused upon, and to meet friends whom we have met on facebook and we want to extend that friendship beyond the cyber world. After the conference we are moving to a beach side hotel and going on a couple of tours. One to the Everglades and the other to Key West. I want to go on that overseas highway and also see the islands that make up part of Florida. We are going to have a rest day and maybe pick up a Miami city tour or a bay tour as well as maybe have a swim at the beach and see what beach life is, in Miami. We then fly to Washington DC. We are going to Gettysburg and we are doing a monument tour by night. We are having a free day where we want to explore some of the Smithsonian museums. Apparently there are 17 or so museums that we can amble through. Whilst in LA waiting for a flight connection on our way to Florida, we are doing a day tour. We have to wait from around 7am in the morning until 11pm at night so a tour will help kill some time and give us a taste of LA.

We are really looking forward to our trip. We are not taking the boys because it would be just too expensive so my mum and step-dad are coming to look after them. I think they are all looking forward to it.

Meltdowns, wet beds and all that stuff – or the lack of them

Since either Greg or I have been home over the last 2 years or so, we have seen less and less meltdowns. Touching wood we haven’t seen a meltdown or tantrum in over six months and we haven’t had a wet bed since before Christmas.

I think it is the routine that has been established at home and the security that one of us is home to organise them without the stress of getting ready for work ourselves. Greg has retired from teaching and he has become the ‘stay at home’ parent. That means the boys do not have to get up early and both they and Greg can rise at a reasonable time to get ready for the day.

Peter and Geoffrey seem settled at the program that they attend. It is a life skill and part recreational program that they enjoy. The staff employed there seem dedicated and nice towards the boys, although I do question their level of education in disability at times.

Geoffrey and Peter enjoy a full life with attending Ablecare Monday to Friday and being part of family celebrations and events on weekends. We are lucky – ours is a blended family and the reception could have been frosty. Thankfully the boys have been accepted. Not with overt warmth but certainly with acknowledgement of being part of my family. I am quite determined, in everything I do, apart from my marriage, my boys come first. The reasoning for this is our able children are capable of taking care of themselves. Geoffrey and Peter can’t and will never be able to. I need to secure their future so that they will live in comfort and recieve the care that they deserve. I am not going to have my sons live is substandard conditions that can be seen often with people with disabilities.

Greg just attended a meeting today getting together key people in the community that either live with a disability or are carer of people with disability. There are a number of grants and initiatives available to assist people to live in the community in their own houses. There is a scheme called the ‘Better Start Program’ where families with children under six get funding to access specific programs, help with the cost of equipment and also assist disabled people to access past times that many of us enjoy and many of us take for granted.

All in all, we are in a good place at the moment. The most important thing is that Geoffrey and Peter are in a good place as well.

Education

I have been asked to give a talk at work about Fragile X and how it relates to Psychiatry.

Being back at work for the last eight months, a few times our registrars have indicated that they wanted to do a Fragile X screen on a few of the families that we had admitted. Of course my ears pricked up and I spoke to them about being a carrier, having children diagnosed and being a Child Psychiatric Nurse on the unit. They were interested. As the year progressed last year, the conversations I had were informal and on a as needs approach.

However, we have just had a change of registrars. Some come for six months and others for twelve months depending on what specialty they are studying. Some are training to become pediatricians, and others are training to become psychiatrists. This year we have a group of girls with one bloke. That bloke is going to be teased and stirred something shocking – poor guy.

I am going to focus my talk on Fragile X and it’s relationship to Autism, ADHD, OCD, Depression and Anxiety. Most of the information is in my head and half written down on paper. The power point is looking good. As part of my talk I want to include moving snippets of families thoughts on testing and having a child with Fragile X. I thought I may start off with the story by Emily Perl Kingsley – “Welcome to Holland” I don’t think this will be a story our doctors will have heard about. I also think it speaks volumes about the road we travel when we have a special needs child in our family.

I am looking at the blogs – to see if there is a story about testing and how it affected that family. It can be sad, it can be enlightening, but I don’t want it to be all doom and gloom or all happy joy joy. Life is not like that. I am on the blogs because I think I am going to read a story that will say just what I want it to say. I don’t want it to be my story. I work with these guys, they will learn my story over time.

Does anyone have any ideas or do you know someone who has written about what I have talked about above. I may choose to finish with the blog piece but I am not sure yet.

 

Just thinking

I was reading a friends blog which reminded me that I have not been on this blog for a while. I need to remember to keep it up to date so that people surfing the net, looking for blogs about Fragile X can read something current and relevant. I also want to bookmark my friends who also blog about Fragile X and what it means for them, their children and their families.

Randi has asked me to put my experiences into a book. The problem is, I don’t know where to start. I think publishing a blog is easier because I don’t have to concentrate on a chronological order and I can write what ever comes to mind. As you read my blog you can read about the diagnosis, Early Intervention, School and now Post school options. If anyone has the gift of putting information such as this into a book, please feel welcome to offer your assistance. I think it would be fantastic to have a compilation of experiences. I am thinking of people such as Mel, Holly, me of course, Amanda, Maggie, Sue. You all know who you are. We all have a wealth of insights and experiences that with photos, would make a valuable book for new parents or new families who are just learning about Fragile X.

I have gone back to Nursing.  It has been eighteen months now since commencing sick leave. I didn’t think that I would enjoy my return to Nursing but I have been proven wrong. There must still be a bit of Nurse in me. I am only working three days a week now, so that may make some difference. I am also studying for my Graduate Certificate in Disability Studies. As we walk the walk as well as talk the talk, professionally as well as personally,  I wanted some structure to my knowledge and to open some doors towards the disability sector. I do not know what that will look like yet. I don’t know if I want to leave Child and Youth Mental Health Nursing or if I want to meld my knowledge into something new. I will have to wait and see what happens with that.

Greg and I have some ideas in our heads regarding which way our skills can take us. Greg being a specialized teacher with a Master’s in Autistic Spectrum Disorder has much to offer the Special Education setting as well as mainstream. Again, we need to sit back and see what happens. Maybe at the end of the year we can review where we are and make decisions regarding our future.

um – we are just not sure.

Wow – I haven’t been here in such a long time!

I have been involved with the Queensland parent support group in Australia. There is a lovely little group forming and we are also getting contact with families in the outback as well. That’s the beauty of the internet, although we may not have easy physical access to each other, we can log onto the internet, either via the http://www.fragilex.org.au  website, facebook or through this blog and catch up with news about each other, as well as find out about research that might be going on.

One of the reasons I have not been here is because over the last 12 months I have been quite sick but I am hoping that things are getting better and that there will not be any more surprise trips to hospital.

Geoffrey and Peter continue to do well and over the last six to twelve months we have seen an enormous increase in functional speech from him. He is not repeating sentences as often and is actually initiating conversation and telling us relevant information about the topic.  He isn’t jumping around the place as much now. We looked yesterday at a friends photos of the EKKA which is on in Brisbane and Geoffrey was telling me about all the rides and his experiences on them – all contextually correct.

Peter is also coming along well. He continues to be non-verbal but he is more predictive in his anticipatory skills. He is always wanting to lend a hand, make you a cup of tea or coffee or help dig in the garden.

I am working two days a week at the disability program that Geoffrey and Peter go to and then working 3 days a week in my Nursing. I have only just gone back to Nursing so I am unsure how it is all going to work out, but I am hoping that it will. It is important to me. I want an input into the type of service that the clients receive, mainly to ensure it remains relevant and contextual to their lives and interests. Running group programs has been something that I have done for many years now, so it is something that I can do easily. I try and take the clients conversation and feedback about different things that are happening in Brisbane or even Australia and turn them into learning experiences, using the topics to practice writing, spelling, simple arithmetic and conversational skills. Even if it’s in the context of survival reading, writing that adding, it is important. If I can teach a person who cannot read or write what a form looks like and then teach them not to sign it with their sign or symbol until they have shown it to someone they trust, then my teaching has been beneficial.  That’s the important thing – instilling the sense of choice and independence in the clients I have direct care with, but also encouraging them to seek support especially if they are not sure.

Wynnum Spring Fair – Brisbane, Australia

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 http://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.

Impressed

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

Having fun together.

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.

Things are a little bit better

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.

Abolutely filthy

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.