by the researcher Easter /UK

Saint Ephrem Chaldean Catholic Church

Basra

16/07/22

Intro

Thanks to Bishop Habib Jajou for his invitation to share this evening about my experiences with children with disabilities and especially autism

I am an occupational therapist.

• Worked in the Middle East volunteering in various projects with NGOs and churches for over 20 years.
• Working with any child with a disability or delayed learning or autism.

 Its been an honour to walk with many families enabling them to be able to help their child learn and develop to their potential.

Here I am currently

• linking with church kindergartens to identify and help some children
• doing home visits
• seeing children during the summer in the presbyterian church kindergarten
• spending time with the parents enabling them to help and enable their children

My starting point with any child I see – to love them, to try to understand them and to find the key that will enable them to learn and develop to their potential. Why?

Because I believe that:

• Every child is created by God in his own image
• Every child is loved by God
• Every child is special and a gift from God
• Every  child is worth loving
• Every child is valuable and worth investing in
• Every child can learn and develop
• Every family has the potential to change and to flourish

So what is autism?

Global increase in number of children with autism type behaviour

Increase in people’s awareness about autism

No clear cause though lots of research about possible causes

• Genetic
• Low birth weight or premature
• Exposure to heavy metals and environmental toxins
• Electronic devise induced – maybe autistic type behaviour rather than pure autism
• In past there was research about child vaccines but this has not been proved

Many mums blame themselves for having these children and carry a heavy load of shame and responsibility. This can affect how they relate to this child. It is not the mothers fault and she has done nothing wrong.

The cause is still globally unknown so lets not blame people for their children

No cure, no magic medicine

• Just ways of enabling and helping the family and child.
• There are different programmes and approaches
• This takes time and commitment from the family and others helping
• Community awareness is vital in helping these children develop and integrate into society.

Probably everyone here knows of a child who might have autism and if you don’t yet you probably will! If we can understand about autism then we can encourage families and help them and allow these children to be part of normal life eg one mum I know just wants to be able to take her son to Time Square or a restaurant without everyone staring or commenting about her son

The earlier we notice a child may have some autistic tendencies the earlier we can intervene and help and the better the outcome

definitions of autism and autism spectrum disorder – many varieties

Neurodevelopmental condition that affects how a child learns, communicates and relates to others and how they process sensory information

eg a child who is delayed in every aspect and has learning difficulties and some autism as well

or a child who seems bright but doesn’t talk or understand communication

 or Asperger متلازمةwhere the child has above average intelligence yet struggles with interacting with people

 or even when someone has one outstanding ability eg memory or music like Einstein

So rather than a clear definition of autism I prefer to look at what different children are like and what they can do

What are children with autism like?

• Affects more boys than girls
• Many different types
• Often appears to be normal until the age of 2 or 3 then parents notice regression especially in communication and social skills

and they may have:          

Challenges with social skills eg prefers playing alone, doesn’t initiate interaction with others especially other children

Repetitive behaviours eg flapping hands, spinning objects

Restricted behaviours eg lines objects up, gets distressed when something ends or gets interrupted, cries when there is change

Difficulty paying attention or listening

Difficulty communicating

 eg makes noises, delayed speech, crying, takes a person by their hand to the fridge

 or the opposite and talks too much and can’t read the situation to know when to start and stop talking, pushes their knowledge on you especially with adults.

Difficulty understanding  eg when processing what other people have said both talking and nonverbally

Sensory processing challenges eg they may not like loud noises or smells or touch

Disturbed sleep patterns

Of course not all children who have some of these difficulties are on the autistic spectrum

Early intervention –  better results

What do I do?

1. Love and accept and listen to parents and children without criticising
2. Assess the child to see what they can do and how they do it
3. Find out what level of communication they are at and start at that level
4. Is the child only interested in their own agenda – doesn’t interact with others , seems to be in their own world, cries when interrupted, doesn’t understand others
5. Or the next level – requesting – pulls persons hand to what they want, may point or gesture, some words on demand
6. Or early communicator – takes turns to communicate, echoes what is said, gestures and sounds, looks at you when he wants something
7. Or partner stage where he enjoys interaction, can chat but repeats what is said to him especially when he doesn’t understand, rote learns things, doesn’t often initiate conversation
8. Find out about their vestibular (movement) and proprioceptive (deep touch) and sensory preferences – explain
9. Talk with the parents about what aspect of the child’s development is most important to them
10. Work together to make small steps towards the goal of development

                    Eg start using signs and gestures with the child, use symbols to encourage communication

• Teach the parents and siblings how to do these simple steps
• See the child regularly to follow up on progress and to then move to the next step.

This takes time and commitment and sometimes progress is small and can be missed but we can celebrate the progress together and this encourages us to keep persevering

Examples of progress

1. One boy  ….singing together and he fills in the gaps when I leave a word out, turn taking, proprioceptive (deep touch) input, vestibular (movement)input, physical contact, eye contact etc all through a game

• Another boy on first visit able to do deep pressure touch on his head and this calmed him down and he requested more by looking at me and then placing my hands on his head ….small steps but all in one visit

• Boy 3 we made a weighted jacket and when he wore it he was able to concentrate for longer time and he would request the jacket when he had to do his school work because he knew it would help him to sit still and concentrate.

• boy would constantly bang and drum things and the parents would tell him not to and tell him it was wrong. We then started giving him more vestibular and deep touch activities . We also then gently stopped him from tapping/banging and offered an alternative eg pop up toy to play with. Each time he would tap or bang the mother did the same, no aggression, no telling off just gently stopping him from tapping, giving him some deep touch and rhythm in another way eg patting his back and offering another activity. After a few weeks he no longer tapped or banged on objects.

• Boy 5  family decided to do some tests with food to see if certain foods were not helping his behaviour. After some trials they found a gluten free diet, with no processed foods containing chemicals, preservatives or sugar. At first it was hard especially when other siblings were eating things he couldn’t have but after a while he learnt he felt better not eating those foods. And there was a noticeable improvement in his behaviour and concentration and interaction with others

• Another boy was fixed on his mobile even though only 3 years old. Here we were dealing with an addiction to the very thing that soothed him and kept him quiet. But it locked him into a world without contact with others and was not helping his communication and interaction. The family decided to go device free with the child. Again at first it was so hard and he screamed and got angry but they continued and after a few weeks he did not even want the mobile and his interaction, eye contact and behaviour was so much better. I encouraged the family to interact with him and to play and to work on his communication instead of leaving him just on his mobile phone.

So what can we all do?

• Accept that these children are different, love and accept them in public as well as in their home
• Support families who have a child with autism
• persevere in getting to know the child
• Keep trying to communicate with the child eg

Get down to their eye level,

Talk in simple sentences

Don’t pressure the child to respond

Show you love and accept them and their parents

Love and acceptance goes a long way!

Thanks for coming today and listening….

If you want more information come and speak to me.