Entering Freddie’s World – Blog 3

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So, just how do I interact with a child who doesn’t seem to want to interact?  Well, not in the way I knew how to play.  He rarely responds to his name.  I’ve never been able to read him a story.  He doesn’t play with toys like my daughters play, he just throws them so he can hear their sound when they land.

Freddie is a little boy who doesn’t speak and is more than happy to play by himself.  There are so many social skills that do not come naturally to him, but he will need them if he is to have any chance of an independent life.   Turn taking, sharing, eye contact, reading emotions, snack table, following basic instruction – ‘sit here’, changing from one activity to another.

I was really frustrated early on.  I knew part of it would mean just tweaking how I play with him.  I just didn’t know how.  Again I turned to the internet.   There is all sorts of advice.   I kept coming across ‘ABA’ (Applied Behavioural Analysis) techniques.  This seems to be a very intense method of therapy that I felt just wasn’t right for our family.

So I researched it further, attended support groups, quizzed other Mums.  Eventually we had a call from a behavioural  therapist.  It was our turn.  We needed this.

She came with huge bags of toys, sat on the floor at his level and started to interact with him.

Freddie babbles and talks nonsense.  She asked me if I babble back to him.  ‘Of course not’  I thought.  This was completely opposite to what felt natural to me.  It has always been important to me to talk to my daughters clearly and concisely so they learn to form words properly.   It hadn’t occurred to me once to babble back to him.

I then watched her do it with him.  It was a light bulb moment.  He looked up excitedly at her as if to say “Oh my goodness,  she understands me”!!  He then babbled back to her with full eye contact, she would then babble to him and so on!  I was in tears! This was amazing.  She was communicating with him.  It did not matter one bit that it made no sense to us.  It made sense to him.   It was like he’d suddenly met someone who gets him.  This lady now had my full undivided attention.

She taught me that the simple aim of a game is to teach Freddie that other human beings are fun to be with.  This is the grounding to help Freddie in all sorts of social situations.  He would quite happily sit in his own world playing things repeatedly over and over again.  This isn’t doing him any harm but it isn’t teaching him anything either.

In that first hour she connected with him in ways I didn’t know were possible.  And here’s the thing, we really can make  some progress by simply changing the way we play.  Many things that came naturally to me had to be scrapped.  New day,  new way to play.

I had to look at what type of toys he likes and learn how to use them to my advantage.  Simple toys like shape sorters, stacking toys become opportunities to take turns.  I need to use things he likes, to manipulate him into learning skills. Hammer toys became eye contact tools!   Once the toy shoots up in the air I grab it before he does.  Then I wait till he makes eye contact to give it back to him.

Hiding under blankets, he loves this.  I hide under a blanket and jump out and tickle him.  He now brings me the blanket to indicate to play this game.  This is HUGE.  He STARTS a game with me. He WANTS to play with me

Getting him to point at things can lead to communication in so many areas. Blowing bubbles and making him pop them with a pointy finger again and again.   Putting things out of reach that he wants.  This is to try to make him point at them.

I show him photos of everything.  He responds very well to this.  One thing I am learning is that he certainly isn’t of low intelligence.  Yes, he’s autistic, yes, he has a developmental delay, yes, he has complex learning difficulties.  But he is intelligent and he understands a lot of the world around him, more so than I realise.

I’ve had to change the whole way I speak to him.   A phrase like ‘It’s time to put your coat on, get into the car and go to school’ would be completely lost on him.   Everything is simplified to just one word.  For example;  “Car” “Bath” “Bed”  “Shoes” “Food”.

Discipline is an area I’m struggling with at the moment.   It’s so hard to find a line relating to certain behaviours, either is it because he is frustrated because of his autism, or is he just being a three year old boy pushing limits?

Freddie struggles to read typical human emotions.   He went through a phase of taking my glasses off my face and throwing them.   He would take them off and stop and look at me, becoming excited for me to tell him “NO”.  He learnt –  That when I take her glasses off  = Her voice becomes different = I get more attention.  It doesn’t mean a thing to him that I am cross. I once pretended to cry but he thought that was absolutely amazing.  In the end I tried ignoring him (and buying spare glasses).  When he realised my voice wasn’t becoming deep and loud, and he wasn’t getting a reaction, he actually put them back on my face and didn’t do it again!  Result.  Granted this wasn’t as much fun as the ‘slap Mummy across the face phase’, but with gritted teeth and trying to keep my face straight (3 yr olds can hit hard) we got there in the end.  I don’t know how I would have dealt with it, had it have been him slapping another child though.    There are situations that I can’t ignore.  I do try to discipline him but I just don’t really understand the best way to do this at present.  I am currently on two autism awareness courses and this is something I really want to learn.  I just need to show him certain behaviours are unacceptable in a way he can understand.

Sometimes this all can seem very complicated.  But I’m learning that sometimes it really isn’t.   There are occasions when it just clicks into place and is quite simple.

We are trying to find the balance in doing things together as a family, and the girls not missing out. The other day, Daddy took the girls out for lunch.  I sat at home with Freddie feeling really guilty about Freddie missing out on this lunch, though I knew he would hate it and the entire lunch would be a disaster for everyone.  I knew I was being irrational but still I felt guilty (Mummy guilt is a whole new blog by itself).

So I thought, how can I stop feeling guilty. I know, let’s take him out for a walk in the push chair instead.  However,  this would mean preparing him with pictures, holding him down whilst I force his coat on ,  holding him down to force him in the pushchair, then giving him a picture of somewhere I didn’t have a picture of!  Plus it was freezing out.

I had this big argument in my head about what I should be doing.  Then I looked at him.  He was currently content and happy.  He was lining and stacking play doh pots, jumping and flapping and squealing excitedly.  Suddenly, the penny dropped (literal phrases – a whole new blog) I realised, to ease my guilt I wanted to stop him doing something he was enjoying and force him to do something that would upset him just to make ME feel better!!

So I took a deep breath, told the voices in my head to shut up! I sat on the floor and started to line stuff up with him!  Freddie’s line, Mummy’s line, Freddie’s line – lets take turns, lets kiss, lets clap and when we complete a line, lets knock it over again and again and again.  We had the nicest afternoon.  As one of my friends said  “Sometimes we just need to follow their lead”.  This is spot on!

This is where I have to find the balance into my world and his world.  His world is important.  It’s not all about forcing him into our world.  I have to appreciate his world too.  I have to join him in it and somewhere in between we’ll meet and have a gorgeous afternoon together.

I have just scratched the surface on this particular topic. There is so much more to learn.  I just keep remembering the original point.  I have to teach him that other human beings can quite simply be – fun.

Alexandra

So what is my understanding of autism so far? – Blog 2

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So what is my understanding of autism so far?

I am asked on many occasions ‘what is autism’? I have been attending support groups for a year now and have found that the subject of autism fascinates me.  I now live and breathe learning about autism, yet I still struggle to answer this question in a simple way.

It is a lifelong learning condition.  The autism spectrum is vast.  For every autistic trait there seems to be an opposite trait on the spectrum.  That is what makes it so difficult for me to answer this question.

I come across a saying regularly – ‘if you’ve met one person with autism, you’ve met one person with autism.’  This is so true.  It is a very individual disability.

I don’t feel anywhere near experienced enough or qualified yet to put this into my own words.  So to pinch a description from the National Autistic Society;

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people.  It also affects how they make sense of the world around them.

It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.  Some people with autism are able to live relatively independent lives but others may have learning difficulties and need a life time of specialist support.  People with autism may also experience over or under sensitivity to sounds, touch, tastes, smells, light or colours.  Aspergers syndrome is also a form of autism.

Often people think, (as I did in the early days) that because they have seen the film ‘Rainman’, which features Charlie Babbitt played by Tom Cruise, and his relationship with his autistic brother Raymond Babbitt, played by Dustin Hoffman, that they understand what autism is. Rainman is just one example of certain traits.  A person can be completely opposite to Raymond Babbitt and still be autistic.

Sometimes people know someone with autism and think that everyone is like this person.  They assume Freddie will be like this person.   I think the point I really want to make in this blog is that it is a very unique condition, that no two people on the autistic spectrum are the same.

I will talk in my blog about Freddie’s autistic traits.  I have seen and learnt about all sorts of different traits but I have no experience in these so I will only talk about Freddie.  For every trait he has, you can bet there will be another child with an opposite trait.

Different colour Jigsaw pieces and rainbows are often used to symbolise autism.  I’m told this is to symbolise that the autistic brain is made up of different pieces of different puzzles.  The rainbow symbolises just how gorgeous and colourful that brain can be.

So what is autism to us?  Autism is a gorgeous affectionate happy three year old boy.  He doesn’t talk but he certainly isn’t quiet.  He’s very happy playing in his own world.  Luckily he has two sisters who constantly force him to interact with them whether he likes it or not! He flaps his hands when excited, he spins to feel disorientated, he loves to line things up.   There are many things he struggles with which I am learning to manage.   With no speech and a baby’s understanding of the world, communication can be very difficult.  We have pictures of everything to show him what is happening next.  This is to try to reduce anxiety when leaving the house when he doesn’t know what is happening next.

I am always trying to picture how he sees the world.  An expert told me to imagine being placed in an airport where there are terminals all over the place in different directions. Everyone is speaking in a different language, the signs are in a different language.  It is very busy.  What would I do?  The answer is simple, I would panic.  This is how life can feel for autistic children on a daily basis and be the cause of many a meltdown.   Before we go anywhere, I show him a photograph of where we are going and give him a countdown.  “Freddie, 5 to playschool”, “Freddie, 4 to playschool” etc.    If I can learn to understand why things upset him, I can change the way we do things to help him understand.  Sometimes my daughters now start this routine for me whilst I am rushing about getting ready.

To try to explain where his understanding is at.  For example, if we want to go left and he wants to go right.  Other than photos of places I have no way of explaining to him in a way he can understand or accept that we are going left.   As far as he is concerned we are damn well going right!!  It then takes me to drag him kicking and screaming left.  This is my failure to plan.

Or if we are going somewhere he recognises and we have to change direction for whatever reason.  I cannot explain this to him.  Therefore I have to really really think about where we are going and plan, plan, plan.   For example, if I am going to somewhere near to my parents, I will have to think of a whole new route to get there.  Otherwise when we drive past Nana & Grandad’s and don’t stop, he will immediately become so upset and distressed.  Suddenly he doesn’t know where he is going anymore.     There is one particular road nearby that actually is really handy to connect us to the local bypass.  However for some reason he hates it, I mean he really hates it. I don’t know why.   Sometimes I forget and drive down it and all hell will break loose in the back! Again my fault, not his.

Autism is teaching me so much.

Autism has given me a whole new meaning to children’s milestones.  To appreciate every little step no matter how small.  In fact, to appreciate different steps altogether.

Autism has come into our lives, given us a good shake and has shown us a beautiful world we didn’t know existed.  In the early days I read a passage in http://www.ncb.org.uk/media/875114/earlysupporasdfinal.pdf ( Very good read) that really helped me make some sense about this world.  It said;

‘I thought I was going to Paris.  All my friends were going to Paris and I thought that’s where I was going too.  But I suddenly found I wasn’t in Paris. I was in Amsterdam.  That wasn’t where I’d set out to go.  But now I’m in Amsterdam and I’m looking around, and Amsterdam is different to Paris.  But actually it’s quite beautiful in its own right’.  And it really is.

Autism is teaching my daughters, kindness, patience and compassion.  They are growing up with a knowledge of special needs which they accept so innocently.   It is making us all better human beings.

Autism has taught me that a child can say I love you without saying a single word.

Autism is changing me, for the better.

And finally, he loves apples.  I mean he really loves apples!! It’s the only fruit he will eat.  And whole, not cut up.  He takes a while to eat one and will really concentrate on it.  Therefore they are my life line!   Apples calm him when he is upset.  Apples keep him occupied when I need him to stay settled in the pushchair for the school runs.  People often say to me how nice it is to see a child eating fruit.  Which, yes it is but, to be honest, if swizzles had the same calming effect I’d have boxes of them.  A quick shop will always consist of bread, milk and 3 bags of apples!

Before I knew my son was on the spectrum I followed a friend’s blog about her son who has autism and sensory processing disorder.  By following her blog (www.cheeriosmilkandspoon.wordpress.com – Find it, it’s great) I gained an awareness of this condition before I even had a personal interest.    I hope I can do the same.  For people to read my blog and gain an understanding on any level.  Surely this must be a good thing.

So the answer to my original question, ‘what is autism’?  Well, this is still a work in progress and I wonder if I will ever be able to answer this in one sentence.  There are so many different areas I am yet to learn about.  My brief experience so far ends with under 5’s.  I am desperate to learn as much as I can. Basically autistic children\people see the world very differently.  To pinch a phrase from Temple Grandin, who is a famous autistic public speaker –  ‘Not broken, not less.  Just different’.

It just means we have to learn how to see the world through their eyes and help make it fabulous!

Alexandra 🍎🌈

 

Our journey so far – Blog 1

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As this is the internet I have changed my children’s names

Last year my son Freddie was 2 years old. His sisters were 3 & 4.  Having them so close together meant we were roughly aware of what a child should be doing at the age of two.  There were only so many times I could put things down to him being a late developer.

“His sisters talk for him”. “He’s just being lazy”.  “He’ll catch up”. “He’s a typical boy”.

Everyone had an opinion on why he wasn’t talking yet, on why he would be distant at times and why he wouldn’t interact like other children.

Maybe they are right we thought.  We’ll just keep an eye on him. This time next year he’ll catch up with his sisters. But deep down we knew there was something different about him, something unique.

A trip to the Doctors led to him being referred to a paediatrician.

Knowing what I know now, I can see that the paediatrician recognised immediately that my son was on the spectrum.  However, he was quite delicate with me in telling me so.   “Does he always flap his hands like that?” “Does he always lead you to things by the hand like that?” “I’ll see him again in 6 months but I think he is on the autistic spectrum.”  Unfortunately he didn’t really give me much more information.

I left that appointment in a bit of a daze.  Ok, so now I have a reason for Freddie’s behaviour.  I know now why he doesn’t talk, why he flaps his hands excitedly, why he has no sense of danger, why he doesn’t play with his sisters or show any interest in the animals at the zoo, why he doesn’t look at things I point out to him, why he doesn’t point out things to me, the obsession with apples!  But I still didn’t really understand about autism.

I knew it was special needs and that he has a disability.   This is an incredible amount to take in.  The uncertainty of what the future may hold.  Would he ever talk, will he ever be out of nappies, will he ever be able to live independently, will he ever be able to have a relationship, will he be bullied, will he be happy, did I cause this? (I didn’t).  Will I be able to be the Mum he needs me to be.  A million and one worries raced through my mind.  Suddenly despite everything being the same, everything was different.  I felt quite lost.

At times like this, boy do you need your family and friends around you.  My husband was great.  I often hear of parents who struggle to accept the diagnosis.  I am lucky to have a husband who takes everything in his stride.  He would say with a cuddle “So what he’s autistic. So what!  He’s still our boy.”   We both work opposite shifts and are like ships that pass in the night.  I need to talk about things and talk about things and talk about things. It’s how I deal with stuff.  The majority of people were absolutely amazing and so supportive.  I really learnt the meaning of family.  I will never forget just how fantastic my parents, my best friend and even my work colleagues were at this time.  It taught me a lot about the type of person \ friend \ daughter \ Mother\ I want to be.

Desperate to understand I turned to the internet and googled ‘autism’.  I learnt about red flags.  Red flags are what professionals use to measure on paper whether a child is displaying signs of autism. These can be  repetitive behaviours, obsessions, humming, lining things up, lack of social skills, attention to detail, toe walking, not liking change of routine , echoing words, playing alone, meltdowns, spinning, hand flapping, only eating a few foods, not sleeping, tics, licking, sucking, and chewing on objects, rocking, teeth grinding, non verbal, lack of eye contact, developmental delay, lining up\stacking up things, snapping fingers, stimming, staring at moving objects -wheels, trains, rolling eyes, dropping things to hear their sound etc etc etc

I submitted several ‘Red Flag – is your child autistic’ online surveys.  Freddie has several of the above red flags and the surveys would all say the same.  Seek professional help, which I had already done.  I was just trying to learn more.   I even watched you tube videos of autistic 2 year old boys.  I came across some extreme therapies and basically just frightened myself.   I ended up ringing this company who told me they would put a plan together with various therapists.  This would cost around £30,000 a year!!  Surely there must be help out there that didn’t require us to re-mortgage!

Eventually I came across the telephone number for our local autistic society.  I rang, not even sure what I was going to ask.   This telephone call made all the difference! (Why oh why couldn’t the paediatrician have given me this number and saved me a lot of heartache)

The girl who answered put me at ease and invited me in for a chat immediately.   I was unbelievably excited for this appointment.  This girl – SHE KNEW!   I had so much to ask her.

We went in and she explained everything to us.  She spoke about autism with a lot of enthusiasm and interest.  She informed us of the support networks that existed.   We left feeling so reassured.  She gave us hope.  Hope that everything was going to be just fine.

Since that appointment a year ago, we now attend regular play and support sessions with her and the team.  I have made several new friends with parents just like us.  I have met the most beautiful children, all on the spectrum in their own unique and beautiful way.  Freddie is in a nursery and has 1:1 assistance.  We have a fantastic behavioural therapist who has made a massive difference in our lives.  From her first visit she showed me a way to play with him to encourage speech, eye contact, taking turns etc.  She just understood him immediately and understood how I was feeling.  I count down the days to her visits.

He attends another special needs nursery where the fantastic staff, some of whom are volunteers, work with him.  They concentrate on teaching him social skills that do not come naturally to him.  Whilst they work and play with him, I sit in the parents room next door putting the world to rights with the other Mums and Dads.  This keeps me sane! We most certainly are not alone.

I have come to terms with it.  I still worry for his future but on the whole I try to be as positive as I can.  He has his struggles but generally he is happy.  It doesn’t bother him that he doesn’t talk.  It doesn’t bother him that he isn’t like other 3 year old boys.  I wonder when he is older, if he may read this and be amused at all the courses, therapists and research etc.

We have started to visit special schools in the area and are so excited by what we have seen.  That there are well equipped schools and teachers who are trained to teach him in a way he can understand.   I felt so relieved walking around these schools.  I even recognised half the pupils from our support groups.

We are at the start of what I’m told is quite a frustrating system to get him a place.  I have to get him a place.  I will keep you posted.

The hubby and I are looking forward to doing some courses together.  We are about to start two autism awareness courses run by our local autistic society and the National Autistic Society.  And hopefully a Makaton course!  Rock and roll eh!

My Nana died this year at nearly 101 years old. Nana herself had 3 children one after each other and often rang me just to let me know she understands.  Before she died my Dad told her all about her great grandson’s disability.  This amazing lady understood fully that Freddie sees the world differently and needs a little extra love and support.  If a 100 year old lady can understand, surely anyone can.

And so this is the purpose of this blog.  To share what I am learning and raise awareness.   The more people that understand, the better the world is for our family.

I have a lot to learn yet, I hope we can all learn together.

Alexandra