Sunday, 15 April 2012

The Thinking Mom's Revolution

Don't talk, just turn off the radio/tv and  watch this short video from 'The Thinking Mom's Revolution' blog.








To the Parents of children with autism who live in Northern Ireland

 Where are you?

Where are your voices?
Isn't it about time you kind of....sort of ....maybe.....just.....did something?

Are we so different from the parents who created the video above?
Is there something wrong with us that we continually let others do our talking?
Many of our children cannot speak.
Seems in Northern Ireland, parents have lost their 'voice' too,
 or voluntarily gave it to someone else.
Who is speaking up for your children? 
So many parents complain but what exactly do you do as parents to make
positive change happen?
Has the system got you so worn out chasing after crumbs, that you can't fight anymore or at all?
Is tea and sympathy all you want?

Or are you just apathetic, happy in the knowledge that the Autism Act will now take care of everything?
Will your children believe you when you said you 'tried your best'?

Did you abrogate your responsibility to your children to 'experts' who you perceived to
know more about them than you do?

Did you buy the B.S. they sold you that you were just a 'parent' and
that you couldn't possibly know how to raise your child on your own?
Good luck with that, hope it works out.

Unfortunately, and unless you act now, a residential home may await many of your children.
Your child could be a nice money maker for the new 'groupie' homes being built in Northern Ireland.
If you believe what others tell you about your child, you will probably get the result
they expect and want of your child - dependence. Dependency makes money all round
and keeps 'professionals' in jobs.

Your guilt and regret won't do your children any good when they are adults. If you
believe the lie that your children 'won't', or 'can't' do this or that, it's a pretty good bet
your children will live up to your lack of expectations.
Those other 'voices' you allow to speak for your children today,
will be gone tomorrow, eventually enjoying their pension packages, having
forgotten all about you, your children and autism.

This letter is aimed at those parents in our society who think the world owes their child
a life.

The world doesn't owe anyone anything, autistic or not.
Be a parent, not someone elses voice box.

Watch the video





The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing...
- Albert Einstein









15 comments:

Margit said...

Hi, I hope it's ok to say something here. My children do not have autism but my friends have.

I only want to say that apathy is in more places than just in the world of autism. Northern Ireland seems to have a history of crowding out voices from others. Others have tried to tell me what to do with my children, that includes teachers at school and people within my family.

We live in a welfare and nanny state and the worst effects of that are seen when things get tough and people do not know how to cope on their own. I grew up in Latvia. We came here when I was 14 years old. My family had a very hard time and had to work in very difficult times. It was like that for my entire family. I graduated from QUB and I have a good job.

It is good that you in Northern Ireland have help from the government, but may be it is too much help. It has dulled your ability to cope. I also have 4 children and no one has helped me. I do not expect help from someone. My children are my responsibility.

minervabradley said...

Margrit, I agree with what you say about parents taking responsibility and speaking up- but when it comes to kids with disabilities then more support is needed. What happens now is that as parents we are being made to feel inadequate & vulnerable, to hand our kids over to 'experts' who often are nothing of the sort.

Of course, we don't physically hand them over we wait months & months for appointments with these experts for half an hour of their time - and in the meantime, we do not get to grips with getting on with our kids' lives and futures- sorting out toilet training, teaching them to sit at the table, teaching them to play with toys, taking them out for short trips just to get used to 'ordinary life'. Like the blog said, we wait for crumbs when we should be rolling up our sleeves and finding out how to make a difference ourselves (& that won't be through Trust 'awareness training').

So you are right when you say we expect too much (because Trusts & ELBs will never be able to give us what we need, though at the same time they imply-with all these plans & strategies- that an awful lot of 'experts' need to be involved) but we do need the information & support to get on with it ourselves, and if e.g. we are not trained speech therapists we need a skilled practitioner to supervise how we manage our kids' progress (after all,who are the ones who have to put in the hours with the pictures and sign language and the turn-taking games at home to make it successful).

Anonymous said...

guys i agree with the blogger to a certain point, i only had to wait 6 wks on an appoitment for the cdc and from that appointment i was offered courses to learn how to help my daughter.

my daughter was only 15m when we started to attend the cdc and it took 10months for the diagnosis.

im trying to find out everything i can abotu autism, more courses? therapy? anything? if anyone had any advice i will listen to it. Even if u think its something small.

my daughter is also non verbal.

who else can i speak to and ask the questions eh?

I'll do anything to help my daughter even if it means knocking on the mla's dooors and asking questions.

AutismNorthernIreland said...

Hi anonymous. Where would you like me to start. hopefully others will pipe in with help.

Are you aware of your entitlement to benefits?

Are you aware of Family Fund, Cerebra, Caudwell Children, ?

Are you aware of Applied Behaviour Analysis, private SLT's?

are you interested in developing your own home program for your child? Do you work, do you have time?

You aren't alone. So many parents out there just like you, but info is key.

Your child is young. She needs an intensive program NOW. Whatever you do don't accept other people labelling her as 'non-verbal'. She is pre verbal. You are her best teacher so you need the resources and help to help her best.

Outline what you need/want in terms of info and I will try to help as will others hopefully.

Anonymous said...

hi anon i am in the same position and i sense your desperation....my 5 yr old has just been diagnosed with aspergers...he has speech however he finds it difficult to use it appropriately and in the right context....i think this is the main reason why he is finding it hard to connect....i need advice on were to access things like social stories/role playing/dietary advice/specialist slt that deals with pragmatics of language.....we are so often told that early intervention is key but the support 'package' appears to be mediocre at best.

I am reading so many books on this and trying to
teach myself in order to understand and help
my son. i read autism for dummies strange title but very easy to read....also temple grandin's life in pictures helped me to understand a bit more....just arm yourself with info and challenge everything...the professionals dont always have the answers.

AutismNorthernIreland said...

Part 1

Hello to both the 'anons'.

Here is the 'help' I know about.

I could go on about why those who are paid to help you, have not done so, but I will refrain from doing so seeing as you both have enough to worry about.

www.caudwellchildren.com Check them out, they provide grants (means tested) to parents in Northern Ireland whose kids have autism. You can receive up to £2,000 to pay for an ABA program/consultants or you can use the money to start biomedical interventions and nutritional screenings/interventions should your children present with the very common physical problems associated with autism (constipation, excema, metabolism problems (sweating?tired?))

Just make an application and see what happens.

You can contact Cerebra.org.uk located in England. They will provide you with a £500.00 voucher for speech therapy (providing you have not received speech therapy in the last six months.) You can access private speech therapy in N.Ireland for your children via this website: www.rcslt.org - phone some of the private SLTs located in N.Ireland and see if they have what you need (make sure they have EXPERIENCE of working with CHILDREn on the autistic spectrum. Talk to some of their clients to make doubly sure.

If you want to create a home based intensive early intervention program, you might contact Peatni.org. PEAT is a parent led charity providing ABA (applied behaviour analysis) to families. They have fully qualified consultants who will come to your home and help you develop a program. They are means tested and you can receive funding as well from Caudwell Children.com.

Were you both provided with the HSC Board 'Autism Guide for Families'? see here for an online copy of this parental guide to services and things to think about after diagnosis: http://www.hscboard.hscni.net/asdnetwork/Publications/Autism%20-%20A%20Guide%20for%20Families%20-%20PDF%205MB.pdf

You can access all of the RASDN documents regarding autism here: http://www.hscboard.hscni.net/asdnetwork/Publications/index.html#TopOfPage

You will have an autism coordinator in your area who you can phone directly to access further information or to signpost you in terms of local services. See here: http://www.hscboard.hscni.net/asdnetwork/ASD%20Co-ordinators.html#TopOfPage

They are there waiting for your call.

Have you had a carer's assessment done? Would you like to have direct payments? These are payments to allow you to buy in services like a therapist, or a childminder.

Are you aware of the family fund : www.familyfund.org.uk ? this organisation can help you to buy toys for your child or even a holiday. It is means tested.

You are your children's best teacher. Your children spend most of their lives with you. Unfortunately, the training you will receive in autism from any group or from your local health trust will be an Autism 101 course, very basic. You will learn about PECS, and visual schedules and not much else.

No one will tell you that if you don't get your child ready for school (out of nappies, able to follow instructions, able to line up, and able to play with toys/hold a pencil, hang up her coat, etc, that s/he may be carted off to a special school or unit.

The basic skills your child requires to master can very much be taught via an ABA program or other intensive program that systematically teaches what your child needs to know. You keep data on what they learn so that you can move to the next task.

AutismNorthernIreland said...

Part 2

ABA is demonised in Northern Ireland. The health people don't like it because historically it costs money (through private providers) and as well, it challenges a lot of people, mostly professionals.

ABA is simple, it's not rocket science and you don't need a clinical psychologist or speech and language therapist to run a program. This ticks people off who make big bucks on autism.

A speech therapist is out of a job without kids who need her/him. Same for Occ. Therapists. Is it in their interests to put themselves out of a job?

Do you want your child to be a statistic just so a speech therapist can have a nice lifestyle?

No, of course you don't.

So use your mummy gut instinct when someone who is paid to help you like an SLT or OT tells you that this or that is no good. It's a safe bet what they are providing you now isn't up to much and isn't intensive at all.







Join lists and discussion groups on line. Talk to parents in England online to learn about how its different than here. If you start to see what parents can receive for their children in terms of education and help, you will soon realise that we are 30 years behind the times here.

Maybe one of you will end up changing things for everyone!!!

Keep your chin up. Just work work work with your kids and never ever expect anything from anyone. If help comes, that's great, but your child's future is your responsibility and that includes his or her education.

AutismNorthernIreland said...

Part 3

Demand that you receive the help of a speech therapist who has many many years experience working with kids who have autism. A speech therapist who has worked with children who are deaf, or who have speech impediments, or apraxia, or stroke or physcial problems, does NOT KNOW ABOUT AUTISM. Deafness and autism have no correlation.
Even though an obstetrician and a chiropractor are both doctors they can't help you if you have skin problems or eye problems.
Ask, no DEMAND specialisation. It seems that people call themselves 'specialists' after having just met one person with autism.
Anything you receive in terms of 'intervention' needs to be based in science. Demand that what your child receives can be proven to be effective. Don't accept someone's 'opinion'. Opinions are not based on fact, they are based on beliefs. If your speech therapist or psychologist 'believes' that your child will never talk, then what't the point of having that person around you.
Stay away from moaning parents who complain or drain your energy. There are plenty of them. They moan but they don't know how to stop moaning and do the work they need to do. They have a self fulfilling belief about their children's 'deficits' and/or they just like attention. They join support groups so they can be with other moaners.
They eat cake, complain, cry, fly balloons and climb mountains to raise money so they can gather again and moan some more.
There are good groups out there, you will have to find them. You will know when you find a 'moaner' group or a group that actually wants to help their children.
You will also encounter the, 'autism supermummy' crowd. These are parents who feel they are special because of all they do. They are always busy raising money, speaking on radio shows, going to meetings and crowd controlling. These kind of 'mummies' you want to stay away from. They live vicariously through their kids' autism because they have no other life. Their life revolves around autism and their lives would probably be pretty dull without 'the autism'.
You will recognise these people straight away when they start telling you how much they 'do' for 'our kids'. Some of these people might have a personality disorder or are they may just be duped into doing what they do because they were naive.
Just demand the best help. If you want something in particular regarding help, you must ask for it. No one will come knocking on your door to provide you with what you want.
Your children both need to be statemented. Even if your children are not in school yet, you can have them statemented. Get in there quick because Statements of Special Educational Need may soon be a thing of the past.
If you don't know what a Statement of SEN is check this out:
http://www.senac.co.uk/
SENAC is totally independent charity set up to help parents find their way through the maze of special education.
You can contact them for further info/advice.
You can request your child be statemented yourself. You just write a simple letter to your local Education and Library Board. You do NOT have to wait for your child's school to do it. If your child is pre-school age, you can still ask for a statement and even request funding to set up a home education program like ABA!
This has all been done before by many parents in Northern Ireland. Contact PEAT for further info on how to do it and get to know other parents who have home programs for their children.

AutismNorthernIreland said...

Finally, if you are thinking of joining a voluntary organisation, be sure to keep your wits about you. After you pay your initial membership fee, keep your guard up regarding continued requests for fundraising. One particular charity in Northern Ireland 'Autism NI' is relentless in its requests to members to raise funds. See their facebook page. No useful information, just requests and more requests to raise funds.

Do you have the time or wish to raise funds for a charity when you are already stretched for time and energy?

You need help, you don't need your pockets fleeced and your time stolen. Ask any charity you decide to join, what the CEO's salary is and ask to see their annual financial report to see where the money goes. If they refuse this, contact the Charities Commission for Northern Ireland.

Autism is a huge money maker for some and 'some' know this. Keep your money in your pocket for your own child, not to pay salaries of others.

AutismNorthernIreland said...

Hi, as some of you are trying to teach yourself, there are so many good books out there.

Unfortunately, many of them are quite pricey.

This one by Ivar Lovaas is very good and you can get it on amazon or ask one of your health professionals if they have a copy you can borrow:

http://www.amazon.co.uk/Teaching-Individuals-With-Developmental-Delays/dp/0890798893/ref=sr_1_10?ie=UTF8&qid=1334745675&sr=8-10

'Teaching Individuals with Developmental Delays: Basic Intervention Techniques.

Another one is here: http://www.partingtonbehavioranalysts.com/shop/ABLLS-R-The-Assessment-of-Basic-Language-and-Learning-Skills-Revised.html a comprehensive list of language to teach your pre verbal child

Finally, (and there are too many to list) see this one

http://www.amazon.co.uk/Behavioral-Intervention-Young-Children-Autism/dp/0890796831/ref=sr_1_2?ie=UTF8&qid=1334746098&sr=8-2

'Behavioural Intervention for young Children with Autism' by Gina Green and Catherine Maurice.
This is the quintessential book you need to start an intensive program of communication and skills programs at home.
Pricey but worth it.

desperate housewife said...

Folks, this is a challenge but your attitude to the situation makes all the difference. After a number of years following a relatively intensive programme our relationship with our child is very strong, all those joint activities really bring you together. We had our ups & downs with that,times when we felt tired & low but we could see changes and because we kept data, we could show 'experts' what he could do with a consistent, step-by-step approach.

I don't want to be a 'super-mummy' (yes, recognise the type)but just couldn't sit there & wait for what we knew would be very mediocre services. We knew this from the start because the consultant was honest enough to say so, & learnt by experience later. Seems to have got better,or at least, the diagnostic phase is quicker really hope both 'anons' get a good follow-on service but think a lot of it will be down to finding out what works best by yourselves- and focus on the communication & 'pre-school' learning, as the blog has said, lining up, eating a packed lunch, toilet training etc. As children get older the education services become more & more important & you can ask for support in pre-school (e.g. 1 to 1 classroom assistant) but again you need to be on the ball with the statementing process asap.

Good luck!And remember it doesn't have to be all dull 'work'- have fun with your kids, that's how they learn best.

Anonymous said...

AutismNorthernIreland,

Thank you so much for taking the time to post all that info i am slowly working my way through it making sure i havent missed anything, you have given me lot's to read up on and learn from.

It seems strange that Autism is all over the news atm after the programme last night on BBC 2. I dont know what to take from it other than im glad its out there. I just hope that N Irelnad catches up more with the mainland.

AutismNorthernIreland said...

Hey sweetie (anon) you are never alone. There are thousands of parents in N.Ireland and families who are knowledgeable - just a matter of finding them!!

Pay particular attention to the 'treating autism' website (UK charity) and to your entitlements for your little one. The help adds up and even if you don't think you need 'help' right now, you might want/need it in the future. Don't ever get so stressed that you end up getting ill.

One day at a time. You are raising a child. It is not easy period, autistic or not. We forget that just because our kids have autism, we are still raising children and it's the hardest job in the world (and the most rewarding!!)

claire said...

thanks for the advice from everyone (im anon2 ) its great to have a source of really practical info from this site...looks like ive a big road ahead and a lot of shouting to do!

ive been thinking about parents who dont have the resources to research or speak up to the professionals...what about their kids?

AutismNorthernIreland said...

Hey anon2 - I am not knocking 'professionals' (employed staff) but if you drill down to what those people know, you may find that it's not a lot in terms of practical experience and evidence based practices which you can use at home.

There are 'professionals' who will not be able to tell you one thing about how to modify a child's behaviour or how to plan future tasks and goals. I just love that word 'professional' you must look up the definition. When used in context of parents does it mean we are 'non' or 'un' professional?

Semantics.

Parents who don't have resources or access to research, should be able to confidently go to a 'professional' and access what they need, but as you and I know, this does not always happen.

There are at least 10 charities in Northern Ireland that work directly with children/adults who have autism. Yet, the latest research and information about autism is hard to come by within these organisations. If they are uninformed, what can they pass on to parents and families?

They get good money to operate and provide programs and services but in my experience, their knowledge is out of date, sometimes by decades. (case in point is my most recent blog post about the pandering of drugs to autistic adults as an intervention).

thanks for reading the blog. If you have other questions, sure would be happy to help if I can.

I welcome specific questions. Everyone has their own area of knowledge and expertise and hopefully questions can be answered here. You no doubt can answer other peoples questions too.