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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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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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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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New Secular Parents Group

One of the hard things about bring up your children with no religion or leaving them to figure it out for themselves as they got older, is that it can leave them with out a sense of community which other children may experience.

Also due to how our communities are still often arranged around parish lines it can happen that children don’t meet and get to know other children who have no religion. Getting to be be around other kids for whom this is the norm is a good thing. It means they know they are not alone or that weird and there are other families like theirs who don’t go to church, temple, mosque or meeting hall.

My own kids have no religion, they both currently self ID as agnostic. They were the first children ever enrolled in their school with no stated religion. Back then over 10 years ago there were no Educate Together schools close enough to make it an option. There are still too few Educate Together schools but it’s changing, but there are still challenges esp as such children move into secondary school.

It is great to see more parents working for change and supporting each other.
One of these initiatives is the Secular Parents Group. They are aiming to connect families, so parents can share with each other and run events were kids can meet other kids like them.

Their first event is coming up shortly.

 
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Posted by on April 17, 2013 in Uncategorized

 

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Another XCase Date, 21 years on and still no legislation.

http://www.thejournal.ie/twenty-years-on-a-timeline-of-the-x-case-347359-Feb2012/

6 February 1992: X and her parents traveled to England and arrangements were made for an abortion to take place in London. On the same date, the Attorney General obtained an interim injunction stopping the teenager and her parents from leaving the country or arranging the termination of the pregnancy. Once they were informed of the injunction the family returned to Ireland.

The AG’s order was based on Article 40.3.3 of the Constitution, more specifically on the 1983 amendment that puts the right of the unborn child’s right to life on an equal footing of the mother’s right to life.

Whelen has since said that he had no choice but to seek the injunction as he had a duty to uphold the Constitution. He told an RTÉ documentary that his problem was “stark” after being contacted by the DPP.

This weeks has been filled so far with the abuses of women and children by the state and the church, be it children in industrial schools, children abused by priests, children put up for adoption who can not never find out their parent’s names, women put into laundries and used as slave labour or women driven abroad to have children and to have them adopted.

We have had 90 year of being our own country and honestly it seems to be little more then a litany of abusing and ignoring those who need compassion and care.

We still have people who are being mistreated in asylum holding places, old people’s homes, children’s care homes, and those in care due to disabilities.

In all my born days, despite the struggles watching the Dáil proceedings today, for the first time I find myself wanting to live in a different country.

 
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Posted by on February 6, 2013 in Uncategorized

 

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How to accidentally raise a feminist..

http://www.rolereboot.org/family/details/2012-10-how-to-accidentally-raise-a-feminist-daughter

If you are committed to feminist parenting, there is no more foundational tenet than ensuring your daughter knows that there is no wrong way to be a girl. The corollary, of course, is also true; for your sons, there is no wrong way to be a boy. Are there wrong ways to be human? Yes, like being a jerk or intentionally hurting people, but attaching your love or respect for your children to gendered assumptions, or to gendered hopes for their future, means that they can fail simply by being themselves.”

 
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Posted by on October 26, 2012 in Uncategorized

 

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