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A different ‘normal’ coffee with other parents of kids with ASD.

Today I am grateful the time I spent with other parents who have children who are 12 to 15 who have Autism Spectrum Disorders. While our kids were in a skills and social group sessions, under the care of professionals, rather then sit for 90 mins in the reception area, we managed to get away for a coffee and a chat.

All of us, kept our phones out of our bags and on the table, just encase the clinic needed to contact us, or in case our other kids needed us. We shared survival tips, stories of heart ache, frustration, small victories, what we have dealt with. Things which we have had to endure which usually we can’t talk to other parents about as it’s upsetting for them but is just part of our narratives.

It was also reassuring to share the things our kids do and did have in fact in common, things which usually separate them from other kids. “Oh, yours does that, yes mine did that to, or still does it, ” cue story about that issue and how we try not to laugh or roll our eyes, or get angry when we have to deal with it. It really normalises our experience as parents, which is so needed. We are not alone in struggling to manage our teens and trying to teach them to self manage.

One thing which came up, again and again was that, our lives would be easier and that of our children would be less miserable if ‘normal’ kids were not as cruel. We have enough to be dealing with, with out the damage to our children’s self confidence, self esteem and self worth, which comes from their peers. Esp in school environments, which we have to send them to, which they can come to view as not safe places to be in.

 
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Posted by on April 1, 2014 in Uncategorized

 

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You better THINK!

IMAG2174

Wonderful to see these up in my kids school.
It’s a good quick guideline.

 
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Posted by on March 11, 2014 in Uncategorized

 

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Bread and Roses.

As we come marching, marching in the beauty of the day,
A million darkened kitchens, a thousand mill lofts gray,
Are touched with all the radiance that a sudden sun discloses,
For the people hear us singing: “Bread and roses! Bread and roses!”

As we come marching, marching, we battle too for men,
For they are women’s children, and we mother them again.
Our lives shall not be sweated from birth until life closes;
Hearts starve as well as bodies; give us bread, but give us roses!

As we come marching, marching, unnumbered women dead
Go crying through our singing their ancient cry for bread.
Small art and love and beauty their drudging spirits knew.
Yes, it is bread we fight for — but we fight for roses, too!

As we come marching, marching, we bring the greater days.
The rising of the women means the rising of the race.
No more the drudge and idler — ten that toil where one reposes,
But a sharing of life’s glories: Bread and roses! Bread and roses!

By James Oppenheim inspired by Rose Schneiderman who coined the phrase
“The worker must have bread, but she must have roses, too.”

 
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Posted by on March 7, 2014 in Uncategorized

 

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The Universe, history, culture and everything.

Went for a walk with my son, as he’s not been out of the house from when he got home from school on Friday. Like me he prefers to go for a walk at night, when it’s quieter. We enjoy the dark and the cool. It was a perfect evening for star gazing, a clear sky, not to cold, so we could stand for a while and look up.

He’s now old enough that he’s pointing out to me the constellations he knows and the
many names and the tales associated with the names, which makes me proud he remembers and it’s strange to be standing beside him and have him as tall as me.
He is also at the stage were I can talk more about the Irish historical political and cultural meanings behind Ursa Major, esp as he will be doing Seán O’Casey in school.

I hope we never stop having discussions about the universe, history, culture and everything.

 
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Posted by on January 25, 2014 in Uncategorized

 

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Holloween and Community.

I’ve not been blogging much of late, that is due to getting involved more in my local community.
I’ve recently become a member of the Board of Management of my local community center and a member of the events committee. We started small with a end of summer disco when the kids went back to school and
have work our way up to more ambition event.

Today was one of them. It went well I am shattered, we had two fire tenders, one from the civil defense who let the kids climb on board and use the mini hose and one from the on call Dublin fire brigade who, who did a talk on safety at Holloween. We had the order of Malta ambulance and the kids got to be strapped down on the strecher and the Community Garda came with a Van and the kids got to sit in the driving seat and be locked in the back.

This time of year our emergency services can face a lot of flack when they are called out esp Holloween night, hopefully some of the out reach we did today will mean there will be less of that in years to come.

Then we had the disco and face painting, colouring in competition, costume competition. We had over a 150 kids attend it was a great community even I got called the Pumpkin lady by the kids due to my T Shirt. It was very worth while. And I am so going to veg out and watch scarey movies wiht my kids for the rest of the evening and have a drink or two.

 
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Posted by on October 26, 2013 in Uncategorized

 

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What it feels like for a girl.

So one of the things which happened over the last 6 weeks is that we finally got a Dx from Blanchardstown CAMHS in relation to my daughter. When the many, many pieces of diagnostic information and reports were put together is has been concluded by the team that she is on the Autism Spectrum and falls in to the criteria for ASD. ASD, Autism Spectrum Disorder is the new term being used as Aspergers is being retired as a clinical term but it to my mind Aspergers is useful but I can understand why it’s being no longer used.

Girls who are on the higher functioning end of the Autism Spectrum present differently and are judged differently due to how they are socialized and our expectations of how children should behave based on generalizations of binary gender. It is more acceptable for girls to be shy, to be quiet, to be obsessive about certain things like my little pony.

One of the sites I was given as a resource which I have found to be very helpful is
Women and Girls on the Autism Sepctrum.

The difficulties in the diagnosis of girls and women arise if clinicians continue to use the narrow definitions set out in the International Classification Systems. It cannot be stressed enough that diagnosis and full assessment of needs cannot be carried out by following a checklist. Proper assessment takes time and detailed evaluation is necessary to enable a clinician to systematically collect information which not only provides a diagnostic label, but more importantly, a detailed profile of the person.

So diagnosing girls is harder do to gender bias, I had been concerned that due to how we run the house hold and explain things to my son and there for to my daughter that she wasn’t on the spectrum but rather picking up on his behavior but it turns out in supporting them both in similar ways we had been helping her cope so that we didn’t see as many melt downs, so it took longer to even get her on the list to be seen by the team and then it took many many months for them to have enough to confirm the diagnoses.

The research into women and girls on the spectrum has really only happened over the last 5 years so very little of it was around when I was desperately trying to educate myself about Autism after my son’s diagnoses 7 years ago. What I have been reading over the last 3 weeks has brought into focus more for me certain behaviors which is a good thing as I can now work with my daughter on them, esp things like this.

In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.

Yep, hopefully the copy of the report which will be going to her school will also help teachers to adjust.

 
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Posted by on September 12, 2013 in Uncategorized

 

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Blowing off the cobwebs…

It’s been 6 weeks from my last entry here, it’s been busy trying to enjoy what was left of the summer holidays with my brats and getting them back to school. I’ve gotten to the stage where I miss writing. Often I had ideas and even started to parse them in my head but I just didn’t seem to have the will to sit still and write. Time to change that and get back on the horse.

 
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Posted by on September 12, 2013 in Uncategorized

 

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Survivors of Symphysiotomy are still waiting 10 years on.

It has been over 3 years from when I first wrote about the horrors of symphysiotomy in Ireland here on my blog. Back then many people had no idea what it was, or why it happened or the horrendous effect it had on the women it was preformed on. That changed when it was featured on Prime time.

The reason it was featured was that it was then 10 years from when the Survivors of symphysiotomy had been promised a review of their cases. The Article here dated 24/06/2003 show those women sharing their stories.

Symphysiotomy survivors demand inquiry – irishhealth.com.

Some of those women are no longer with us and while we have seen the government promise a bill to amend the statute of limitation to allow for redress there is no sign of it reaching the final stages as the end of the working period for the Dáil draws near, despite The Statute of Limitations (Amendment) Bill 2013 passing Second Stage on 17 April.

So the Survivors of Symphysiotomy put out the word they would be demostrating today and http://tradeuniontv.ie/ were there to cover it.

Survivors of Symphysiotomy

19 June 2013
SoS driven to demonstrate: 8 and 1/2 weeks later, our Bill STILL hasn’t come before the Justice Committee. The Minister for Justice doesn’t seem to be making himself available, so the Bill has yet to be tabled. We are holding a DEMO – our first – this coming Wednesday, 26 June, at 11 a.m., outside the Dail. Please bring banners, buggies and above all, bodies! Let’s shame this Government into doing the right thing by survivors of symphysiotomy.

Ireland is indeed being haunted by the many wrongs it allowed to happen, hopefully those ladies will not be made to wait any longer.

 
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Posted by on June 26, 2013 in Uncategorized

 

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Autism Funding not spent, while families struggle.

http://www.thejournal.ie/hse-defends-e300000-autism-spend-in-reillys-political-area-965518-Jun2013

While former Minister of State at the Department of Health and Labour TD Róisín Shortall accepts that there was no political interference in this case, she has called for an end to “potential cronyism or secret decision-making around the spending of public money”.

“All of those decisions should be taken in an open and transparent manner,” she said this morning. “Nobody is denying there was a need for services in north Dublin. There were long waiting lists and it is only right and proper that necessary staff should be provided. But there are long waiting lists in other areas and you have to ask why it is that the money announced has not been spent.”

Minister Reilly announced the €3 million in extra funding for autism services in January 2012. So far, just 10 per cent of that money has been spent. According to Freedom of Information documents requested and obtained by the Irish Times, none of the €1 million allocated for 2012 was used last year.

And yet it was this time last year the HSE moved the only two Child & Adolescent Mental Health service clinics from the north side of Dublin and put them in a building in Cherry Orchard Hospital.

These clinics are where schools and family Gps refer children for assessment for Autism spectrum and provide skill groups and support groups for parents. They link in with the schools in areas and other service provider but were moved to the other side of the city.

Which results in parents trying to juggle 2 buses cross the city with a child who often arrives too stressed or worn out to take part in the assessment process. Often appointments are missed due to child care issues when there are other children and it results in a whole day off school being needed to attend appointments. While it is a brand new building there is nothing on the site for parents who have to sit in reception for anything from 30 to 90mins and wait. There is no where to even go for a cup of tea or coffee, all you can do is sit and try recover from traveling over and gird yourself for the return journey, which can be far from pleasant given that a handful of stops after the hospital is CloverHill Prison.

Staff are not being replaced in those services and when they are eventually there is a back log, esp when it comes to speech and language specialists. The waiting lists are too long and children and families are left in limbo and unable access services needed so it is deplorable that this money was not spent.

All of the above has impacted badly on our family as my daughter was accepted for assessment while in 6th class and the on going process is still not completed despite her finishing 1st year in secondary school. The move, the lack of replacement staff and cases getting dropped in the shuffle the move, have all played it’s part in dragging out the assessment.

Needless to day the lack of transparency and the funding not being spent when there is a desperate need has me livid. The campaign to return both the Blanchardstown and Castleknock CAMHS to the communities they serve is on going with both the parents and staff putting pressure on the powers that be in the HSE.
While I would like to think that sense would prevail there seems to be little of that or consideration present in the government and HSE decision making process.

 
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Posted by on June 25, 2013 in Uncategorized

 

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Chairman says health of mother and not just life needs protection

Chairman says health of mother and not just life needs protection .

The legal situation should be addressed “urgently” to ensure that not only the life but the health of the mother can be protected in pregnancy, the chairman of the review team said.

Prof Sabaratnam Arulkumaran was asked whether, to ensure another woman did not die in circumstances similar to those in which Savita Halappanavar had died, the law should permit termination of pregnancy where there was a threat to the health and not just to the life of the mother.

He replied: “Yes.”

More women could die in Irish hospitals in a manner similar to Savita Halappanavar unless legal clarity is provided for doctors on when they can intervene to terminate a pregnancy, the HSE report into her death has warned.Savita Halappanavar report: Tragic. Devastating.
Savita Halappanavar (left of photo) with children at Galway’s St Patrick’s day parade.The girl with the diamond smile
Dr Katherine Astbury advised Savita Halappanavar and her husband that a termination might have to be considered after a diagnosis of sepsis was confirmed. Photograph: Eric LukeTermination was denied at first because clinicians believed their ‘hands were tied’
Sabaratnam Arulkatumaran (left), Chairperson, and Dr Philip Crowler, National Director for Quality and Patient Safety, at the publication of the HSE clinical review report into the death of Savita Halappanavar on Thursday. Photograph: Eric LukeSerious gaps remain in what we know about operations in the hospital
“Failing to devise and follow a plan of care for this patient” is a fairly damning indictment of the healthcare professionals who looked after Ms Halappanavar. Photograph: Eric LukeMedical view: Focus on basics of care likely to help save lives

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“There are certain conditions a pregnant mother might have which can suddenly escalate – for example in this particular situation from an infection that is very localised but which spreads to the whole body and is sepsis.

“With severe sepsis the mortality rate is about 40 per cent, and if she goes into septic shock the mortality rate can be as much as 60 per cent. This can be in a very short period of time which means that [if] intervening is at a later stage it is difficult to bring the patient back to normality and to control.

Medical community
“So what we are saying is the medical community have to discuss with the legal profession if you really want to say the chances of making sure someone survives; this needs discussion.

“We don’t want another death happening because there is some ambiguity about how they interpret the law.”

He also said there were situations where a mother’s health only was threatened but which could escalate rapidly into a situation where her health would be permanently damaged.

“If you have infection, by the time it comes to sepsis and severe sepsis the fallopian tubes might be injured, she can become sub-fertile, she might have [later] an ectopic pregnancy. Life-long she might have pelvic inflammatory disease. I mean, how much are you prepared to take before considering termination of pregnancy?

“At what point is this going to give permanent injury to the woman, or what point might it escalate to death.”

He said too much responsibility was on individual doctors to interpret when it was legal to intervene, leading some to wait until the foetal heart stopped to be sure they were acting within the law.

“Even until the last minute they are waiting for the foetal heart to disappear before the termination would be considered. Some might have done it much earlier … so it seems to be a little bit individual, even within Ireland. So we must have some definitive meanings as to when you think this should be done.”

His patient
If Savita had been his patient in the UK she would have been offered a termination on Sunday, October 21st, the day she went into hospital. “If it was my case I would have terminated the pregnancy,” he said.

We need to get the 8th amendment repealed to safe guard women’s health.

 
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Posted by on June 17, 2013 in Uncategorized

 

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