Inclusion

I’ve been doing a lot of thinking about inclusion, in a range of situations, for those who are disabled.  These thoughts are a result of a number of events that have impacted me personally or impacted others I know who are disabled.  I am aware that inclusion is not taught and rarely is it modelled, both these things have to change. 
 
In education: inclusion is not just about being mainstreamed.  This was a prevailing thought at one time. So much so that there was a movement to force the abandonment of special classes.  However mainstreaming, as someone once said, can actually be main dumping. Inclusion is being included sure, but it is more than that – it is being accepted, listened to, and having accommodations made so that FULL inclusion becomes a reality. It’s allowing inclusion so the person can fully participate in their education which isn’t just at early childhood but includes primary, intermediate, high school, and the years beyond that. It’s not about pathways that lead to exclusion.
It’s about providing opportunities to be included beyond what the disabled person may have hoped or dreamed of. 
 
In health: inclusion is about having our voices heard when it comes to both our health and our disabilities. It means not having health professions deferring to support workers but listening to the voices of the disabled, we know our health issues, most of us are more than capable of articulating them.  Inclusion is about not being patronised to , not being ignored, not being dismissed.  It’s about listening to the many ways we may communicate: from voices, to AAC, to behaviours.  It’s more than just hearing the voices it’s about listening and finding ways to accommodate views which may differ. It’s about finding ways to meet the needs of disabled. It’s definitely not about pathways that lead to seclusion.
 
In organisations: inclusion is not just being part of an organisation. It is also not just being accepted (which can mean just being tolerated). Inclusion at this level is about being valued for the contribution you can make, about having your contribution actively sought out, about listening to ideas that may be different from your own. It can be about valuing diversity of people, views, and ideas. It can be about sitting around the table and looking at the voices that are missing and should be there. 
When it comes to disability it may mean non-disabled having to make concessions, and going the extra mile to ensure those voices are heard.
 

Some may think this is PC gone mad. But it is actually about rights cemented in law that New Zealand has signed up to. The UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) and the Rights of the Child (NZ is failing that one). It’s about the implementation and action plan connected to the Disability Strategy.  It’s not just about funding, it’s about resourcing which can be so much wider than just money. It’s about people.

So inclusion is about people, all people, being given the chance to fully participate and contribute and having their participation and contributions acknowledged, valued,  about those things not just being tolerated and not talked about behind their backs.
Disabled people want to make a valid and valuable contribution in all spheres of the world.

Inclusion really is nothing about us, without us. If you are serious about inclusion, don’t shut us out, don’t attempt to justify shutting the door, don’t attempt to speak over our ‘voices’, don’t dismiss us. I hope we can journey on the path to full inclusion together, because society will be the better for it.

After the diagnosis of a child

autistic child
When a child is newly diagnosed, parents often feel guilty and then fearful. They fear their child being developmentally behind, getting bullied, not fitting in, being disabled, being stigmatized.
A parent’s distress about receiving an autism diagnosis is often because of the messages society, and in particular professionals, family, friends and organisations send out about autism. Messages of “bewareness” and lacking hope.
 
It is always a choice as to the road to take, the attitudes we hold, and the behaviours we show our children following their diagnosis.
 
It is important to recognise that we should have our children’s back. We must be their greatest supporters. They must know that we are there for them. Society can be cruel but we can be their calm in the storm, we can shelter them from the hostilities they may face. Develop a thick skin against those who attempt to criticise your child or your parenting style in the face of autism. Don’t take the child’s behaviours personally.
 
To do this it is important to realise that autism is not some add on. There is not some hidden child beneath the autism. Autism is neurological – it makes up the core of the child. We cannot say we hate autism but love our child. Because to hate their autism is to hate their neurological make-up – something they can never change. This is the same as saying I hate their skin colour but love the child. It makes no sense. We have to love unconditionally.
 
Parenting any child is challenging – parenting is not a job for wimps. There will be highs and lows, there will be wins and losses.
Children often come with a variety of needs and challenges without autism – that’s just parenting. Blaming a child’s autism for making things challenging is the same as blaming the child. They can’t separate their autism, it isn’t an add on. It is them.
 
Find other autistic adults to help. We are a resource. Many of us are willing and able to help. We understand your child. Our autism may not be the same but will have much in common. We can often contribute as much, if not more than experts, because of our shared neurology.
 
Allow us to develop in our own time and in our own way. I hear of parents trying to get rid of their autistic child’s special interests and I mourn for their child. Our special interests are important for us, they may provide a career path later on. Our milestones are not necessarily going to line up with those determined by child development experts. Encourage us, give us opportunities, but don’t force us to comply with someone else’s developmental timeline.
 
Think carefully about therapies. Some Autistics are anti any medication or therapy. Personally, I am in favour of gentle therapies that guide and nurture a child. Therapies should allow the child to blossom without trying to ‘fix’ them or make them ‘appear normal’. Therapies and medication should be about what the child finds helpful – this is about them, not us or you as a parent.
 
I am not personally in favour of therapies that extend to 40 hours a week. A child needs to just be, to play, to laugh, to stim, to enjoy life without being locked into a demanding schedule that is likely to trigger meltdowns and involve considerable financial and emotional stress for parents.
 
Many parents head down the road of medications out of desperation and I despair of some of the medications children are on. Most drugs prescribed for children have not been tested in children. For example, while adults can give informed consent to participate in a clinical trial, children can’t because “consent” implies full understanding of potential risks and other considerations. Anti-psychotic drugs are sometimes given to autistic children and I fear the long term health implications of this. For example, Resperidone (often given to help with aggression) can cause huge weight gains. I would personally favour proven natural remedy treatments over hard medications. I recognise sometimes there is little choice, especially with some co-occurring conditions such as epilepsy, but explore options.
 
Give your child dignity by always presuming competence. Your child may be young, your child may have co-occurring conditions but your child is likely to understand more than you or so called experts think. There are many ways to communicate and if your autistic child is non verbal it doesn’t mean they have nothing to say. They need to be helped in finding other ways to communicate: this could be RPM, Apps, sign language, writing, art, even playing. Remember communication is the key, not speech.
 
Find other autistics. Your child (and likely you!) need them. Your child needs to understand there are others like him/her. Your child needs to realise they may be different but that is okay – different doesn’t mean wrong. Find autistic adults. One of the best things I did was find autistic adults as my son was his early teenage years. He realised he would be alright. He had someone to ask questions of that wasn’t his parent. He could view their lives and see hope.
 
Finally practice and promote Autism Acceptance. How you treat Autism and your Autistic child sends a strong message to society.
If you portray that your child is broken and needs to be fixed then that is the message that society will take from you. Those of us who are Autistic Adults believe we don’t need fixing, that we are not broken. That we have value and worth as we are.
That we have much to contribute (and many of us have already contributed) in a positive manner to society as a whole. Learn to embrace the Autistic culture because your child is part of it. And you could find even you are a part of it…it is not uncommon for parents to follow through on their own diagnosis following the diagnosis of a child.

autistic child 1

Advocating Alone

When you are an autistic advocate, advocating for yourself and others, the journey is oft times a lonely and isolating one.
The people you care about and advocate for will hate you. Those you advocate to will not want to hear the message you bring.

These are the times when I feel fatigued by the mental strain and stress of the constant battle.

It’s during these times we most need the support from those who know what it is like to be in this difficult place.

I wish I could say that we advocate all support each other. But that would not be the truth. But for those of us who do support one another we find courage and strength to fight another day.

Even without such support I could not abandon those I desire to serve. Though there may be times when all seems lost or futile still I will try, for if not me, then who? I do not want to give up on ‘my tribe’, my people, or even myself.

Sometimes there are moments of joy – when someone ‘gets’ it, when there are successes. I cling to those moments, hoping I am making a difference. Not for me, but for my peers and those who will come after my generation.
hardships
All too often there are the moments of struggle, the times of self doubt, the in-fighting, the times when things seem hopeless. In those moments I will continue to push for more than autism awareness. I long for a way for Autism acceptance, inclusion, and affirmation to become a living, breathing reality, more than just a glib phrase or two.

I have a dream, a dream for real external change. But that dream has had to start with myself. My journey has been one of self examination (I have made many mistakes and failed many times). I have seen my knowledge and attitudes develop and be enriched by the unselfish sharing of others of themselves and their journey and insight.  I have allowed others to impact my life just as I seek to impact the lives of others.

There are many advocates all working for a similar aim with regards Autism Acceptance and more. We won’t always agree with each other in the finer details, we may not always even like each other, but we are all trying to make a genuine difference, not just for ourselves, but for other Autistics.

For me, that means the collaborative approach. One of moderation. One that puts me outside of many Autism Activists that I respect and admire for their guts and fortitude. But each of us has our own unique journey. I cannot be them, and I must be true to my path.
My journey means working with people, or even organisations who have different aims than me. Why? Because I have to use my ‘voice’, my presence, to make a difference wherever and whenever I physically can, where those opportunities present themselves for me to seize.

I know my choices have not always pleased others. I am sure there will always be armchair (or keyboard) critics ready to pounce. But I am doing my bit. I am acting on the call on my life.

So where am I going with this? I wish I knew.
It is my fervent hope that advocates will learn to work together more despite our differences, that advocates will learn to be more accepting of one another’s flaws and failings and build each other up in encouragement without judgement.

Difficult times will come but we have choices:

  • To not give into self-doubt that many of us are racked with
  • To not react in anger or disappointment to our fellow advocates
  • To work together in mutual support.
  • To actively look for positive ways forward in unity
  • To hang in there despite the obstacles.

Privilege

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I have noticed that some autistics feel they have an entitlement, a privilege. They think they are entitled to special treatment because they are any or all of the following:
an autistic
an autistic advocate
active in autism politics
someone they think is important in the world of autism
all of the above and/or
because of the co occurring conditions they may have.

If I like someone I cannot demand that they like me back, if I think of them as a friend they don’t have to feel the same way in return, if I show them affection or if I help them they are not under any obligation to return the feelings or favours. My choices are not their choices.

I must be careful not to consider myself a victim because of these things – because that is a presumption that I deserve better;  that is privilege.  I may still be a victim of discrimination, I may still be a victim of wrongful harm or treatment. But I am not a victim if other autistics do not like me, I am not a victim if others do not appreciate my work. I am a victim if I am bullied, abused or harassed.

Along with this I also have to recognise when others need personal space, when others are enforcing their boundaries and in return, I too get to have personal space, I too get to put up personal boundaries. The thing is these must be clearly communicated from the beginning in a firm but fair manner to avoid miscommunication. I have made mistakes in this area but I acknowledge and own them. And have learned from them.

All too often, from our place of privilege we get angry. Angry over the wrong things, angry at people and not the issues. We judge and attack others for their autistic behaviours instead of guiding them, teaching them, and communicating. We look for the ugly instead of appreciating the good in them, the good done by them, the beauty at their core.

And only when we learn to communicate our needs and wants effectively will we be able to work together for the common goals we all strive for: awareness, acceptance equality and affirmation for all autistics – amongst our peers and amongst those who are of a different neurology. Looking for the good in others, and affirming that will get us so much further.

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And from a friend:
“The strongest people are those who can restrain themselves from throwing hurtful words. Even if they know they can, it does not mean they should.
Anger has a way of inflicting injury on another, but leaves you wounded too.”  Dodinsky

 

 

Fiona O’Leary – The Truth – Facebook slamming

Fighting against other autistics has to stop and the focus must be, instead, on fighting the issue of abusive bleach treatments being directed towards autistics.

helpfulhev

FIONA

A few months into our MMS fight, we discovered a Genesis 2 church seminar was happening in Ireland in about a weeks time.  Myself and a friend, on her suggestion looked to see if we could find women’s asperger’s groups in Ireland on Facebook.  This is where we found Fiona.  Within 5 days she had appeared on breakfast news and headlined a newspaper,  and we know she has been the greatest asset to our cause.

Almost immediately she was on board with Rita O’Reily from Primetime, a huge Irish documentary program creating a documentary, which took 8 months to complete.  This is the most detailed documentary to date of this horrific protocol.

bleach

Unlike the most of us campaigning,who were nervous,  Fiona very much knew she needed to go public.  Her drive to help autistic kids raised above their fear of reprisal by the genesis 2 church.  We honestly didn’t know…

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