Autism Awareness: Discipline and tools

Today is the last day of the autism awareness month, I hope to have shared a little more on how autism effects our lives and how we work as a family.  I am in no way a parenting expert, have all the answers and nor do I claim that this is how autistic children should be raised - this is just our experience.  I have found parenting difficult and therefore wanted to share about what has worked for us.

 

Parenting is so more challenging then I ever thought.  I had no idea how hard it can be but at the same time, how rewarding and magical it can also be.  I think I approached it with lots of preconceived ideas about how I was going to parent my child and what types of children I would have. Well a lot of that got thrown out of the window, as life does not always go to plan and things did go as smoothly as I had anticipated.  I find it hard that I cannot control them but have to accept them as individuals with their own paths, yet at the same time be responsible for them.  I think in some ways this is a good thing, as I have learnt and grown as a person so much and in other ways in drives me crazy.  I think parents can come under so much judgement, from other parents, as well as themselves.  I know I  have been guilty of judging myself by what I think, someone else is thinking about me... Sometimes, we just need to be kinder to ourselves and accept our limits.  I love my children so much that I just get cross with myself when I cannot deliver what I think I should and get frustrated that their behaviour does not represent how much hard work I have put in - Basically, I need to trust God more that He has given me my children and whatever my shortcomings and failures may be, they can and will be used as opportunities to challenge and shape our lives. God is ultimately in control and He loves my children more than I can fathom.

 

Disciplining children is one of the areas I have found hard.  Mainly because whatever I tried with my son, it never worked - by this I mean, produced the quick results I had hoped for or seen in other children.  The conventional methods of disciplining by smacking or using time outs just did not work for our son. Sometimes this would make the situation so much worse then it was to begin with.  This is due to sensory needs I was completely unaware of.  We do not use these methods now.  I read tons of parenting books and went on a parenting course when he was younger to make sure I was using said methods correctly - they just didn't work. We tried lots of different strategies.  Whether this be positive, relaxed, strict or a mixture.  I am strong willed but I found this area so challenging as my son was so wilful.  I found it difficult that he seemed so bright in some areas but completely oblivious in others. 

 

When we discovered he had autism, we had to completely change our views on what was and was not acceptable. I believed that any unacceptable behaviour should be met with a heavy consequence and then they would no longer do said behaviour.  As my sons brain works in a different way, this did not work for us.  We had to focus on the big picture - what do we need to achieve.  We learnt that it is unfair to discipline for a sensory meltdown but to have empathy for him instead, he wasn't doing it out of choice.  Understanding his condition, finally allowed us to see life from his point of view and to have empathy for him.  It helped us realise that the behaviour we saw/disliked was just the tip of the iceberg and that there is a lot more going on underneath, than we could see.  We learnt/learning why he was/is in meltdown and therefore would plan to avoid this or manage him through it, by finding coping strategies.  Basically, our focus shifted from discipline to training.  Rather than punishing, we would try to anticipate what was coming and help him to make the right choice.  There would be a lot of emphasis on the 'right choice'.  He is not a naughty child and wants to follow the rules.  Although his speech was really good, his understanding was not.  We needed to make sure he fully understood what was expected of him.  If he did not, then no amount of discipline was going to change the outcome - his brain is wired differently.  This is not a quick result method and it takes time, patience and consistency.  I have had to learn to side step emotions to analyse the situation, to best help him.  Its not easy.

 

There are of course times when he knowingly makes the wrong choice and we want him to learn there is a consequence to making a wrong choice.  If there is a natural consequence to the offending action we will do that ie destruction = tidying up or paying for it to be replaced, unkind to someone = doing something nice for that person.  The consequence needs to make sense, as it is then easier for him to reconcile the 2 actions.  He does not necessarily happily do the consequence, which is when we might revert back to using the 'first' and 'then' method.  We also take away computer time - normally in 5 min instalments. if we took it all away then they would feel there is no point in behaving anymore. We use this method for all our children and hope that it will grow with them as they age and understanding increases. 

 

I remember having a very long chat with an educational psychologist about not saying sorry.  I found this a hard concept as everyone expects your child to say sorry if they have done something wrong - especially when they are under 5.  My son normally would not be sorry, for his thinking would be 'I wouldn't do it if I didn't mean it' or that his actions were justified, in his sense of justice.   He has a very strong sense of justice.  Therefore this could be a battle.  Forcing them to say sorry when they do not understand why, just teaches them to manipulate others rather than to understand the concept of actually being sorry.  The argument being, he needs to learn and understand first rather than just appease others with a word.  Otherwise he will learn to just say it without meaning, learn that it is over once said and move on but I want more for him, to learn the concept.  I will often just say sorry on his behalf and now that he is getting older, he is learning the concept and I feel he does mean it when he says it or he may show it by giving an unprompted hug.

 

We often use social stories to help train him.  Social stories are a visual story detailing what will happen and when, written in third person.  It helps him to understand what to expect or social concepts.  This takes away some of his anxieties and helps us to avoid meltdowns for new situations. I use social stories to help explain why he needed to go to school, why he should do as his mother asks (was worth a try), what will happen when he goes to certain places - as he says 'your just telling me what to do but in a different way'.  Presenting the information in this way helps him to understand.  He doesn't need them as much now but they are still useful.  His school are great at providing them and we can use them as a reference.  We have also used the 5 point scale and visuals to try and get our son to recognise when he is beginning to loose control.  A 5 point scale is a visual used to help understand how you feel ie 1 = happy, 5 = lost it.  We had to amend the 5 point scale to 3, as he couldn't understand the emotions in between, so we adapted and made it work for him.  He still really struggles in this area and it is mainly the adults who know him well that can recognise the signals and have to act.  I am hoping with time, that he will be able to do this himself.  We also have bible time each day which not only teaches him about our faith but helps us to discuss different topics and character traits.

 

All of this takes time and a lot of perseverance but we have seen results.  It is tempting to give up when everything takes so long to learn and to feel disheartened.  Some things other children just get and we have to persistently train to achieve them.  It is good to stop and remember how far we've come and to celebrate the achievements, no matter how small or odd they may seem to others.  I hope that our sons will not only learn those things to get on in the world but also have a real sense of love, security and family.  I hope that they really grow in their faith, have a boldness to go where God calls them and will be able to think of and serve others.  Behind all of this, has come a lot of tears and prayers.  It may seem like I know what I am doing but it has been a tough road getting here (as I said before tears and prayers, trial and error) and I am fully aware there is a lot more parenting to do, more life to face and we have the teenage years approaching....

Autism Awareness: Chores and pocket money

From learning about autism and speaking to parents/professionals, it became really clear to use their love of routines and order to help train your child.  I was advised what you put in place as a child will follow them through, as they get older.  For example, I was told how some children with ASD who have obsessions with computer games find it really difficult to manage their time as they become teenagers - that they often will play on through the night, every night.  I took this advice and we implemented a 30 minute computer time limit.  If they need to do homework, this will be on top.  As they get older, the time may well increase but they will know it is limited.  They have the opportunity to earn extra time and on birthdays, Christmas they can have unlimited time (TBH we are normally really busy on these days so its quite easy to manage).  Another thing they pointed out, was that this can be applied to house chores...

 

I am a stay at home mum and I like to look after the home and my boys.  I like to do things for them and have things 'nice'.  My husband works full time and these traditional roles work well for us - as he has no interest/clue in these areas.  His idea of cooking is ordering take away.  What I didn't realise in doing this, was that we were building up a pattern of how our son expects the world to work.  We just believed it was an efficient way to use our skills for our home/family, and on my part, it was an expression of love for my family.  We had a talk with him and it became quite clear that he believed all housework etc is woman's work and therefore he didn't need to learn or do it (he was 8).  I was not happy, this is not how I wanted to raise my sons and if he were to get married, my future daughter in law would certainly not be thankful! I have no idea if B will be called into marriage (I do pray and hope for this) and how it would all work out but I know he needs to learn these skills to be independent.  I do not expect him to have a love for the home in the same way I do but I would want him to be able to look after himself, which is my hope for all my sons.  It would be harder to ask him to do this as he gets older (as he will become more set in his ways, not impossible but harder) so we implemented chores into our daily routines.  We didn't want to single him out, so the whole family enlisted.  We found a job for the 2 year old too (I am pretty sure it was his job to pass us things like spoons but he felt and everyone saw he was part of the team).

As some of our children have sensory processing disorders, one of the treatments for their tactile defensiveness/sensory seeking behaviours is to do heavy weight muscle work.  This includes sweeping and wiping down tables.  By getting our children to do chores, we are also helping them to do their OT exercises and aid their development.

 

I enjoy watching a TV program called 19 kids and counting.  I am quite fascinated by how large families work and I love their approach and the way their kids are.  I bought their books, to learn more.  I was impressed by how they organise everything so thought about how we could apply this to our family.  We want our children to grow up to have a good work ethic so each chore has a monetary value but at the same time, if we asked them to do something, we didn't want them to expect to be paid to do anything for someone else.  So we have devised a 'family service and chore plan'.  Some tasks we do to help us work together well as a family, others are paid jobs.  We also make it clear that tidying up after yourself is expected, not a 'job' along with keeping yourself clean.  We have a book which lists all the jobs and it records how much money they earn.  I find the most practical method is to run the book as a bank account, otherwise with 4 kids I'd be forever needing change.  The chores/service tasks are age appropriate.  We expect the job to be done properly or otherwise they don't get paid and they have just wasted their time.  We feel this is a good work practise to get them into.  It sounds like I now get the housework off but trust me I don't.  I have to manage the jobs and teach them how to do it.  They have some set jobs which are rotated each day and then there are ad hoc jobs which they can do as and when they arise or if they want the extra money.  It would be easier to just do it but I know by letting them do it I am teaching them more, even though they really do not appreciate the lesson.

Family service tasks:- empty dishwasher, making drinks, getting out breakfast stuff - asking what everyone would like, getting out spoons, loading dishwasher

Rotated chores: Wiping table, sweeping kitchen floor, drying up, wiping down chairs/cleaning dirty spots on the floor.  We charge between 10-40p depending on the job, which may sound really small but over the week it averages about £1.80.  They then have the opportunity to earn more.

Adhoc jobs: Cleaning the car outside/inside, vacuuming the car, pairing up and sorting socks/underwear,  emptying bins, cleaning cupboards etc

Autism Awareness - Routines and Reward Charts

So far this week the boys and me have adjusted getting back into the routine of school.  It has been tiring, picking them up and taking them to all their various clubs, helping them to remember kit bags etc as well as doing any home work, prepping dinner... but we've made it through :)

 

When the boys come in from school, they all go through the 'after school checklist'.  This visual helps them to get organised for the next day.

 

• All letters/topic pages to mum (B's school tends to email or pass on to his escort as he is particular about what will and won't go in his book bag.  I put this info by my diary to check through and update when a get a second)
• Put book bags away
• Empty kit bag (put contents in the wash bin or if wearing kit, get the uniform and school shoes out and away)
• Get the next kit bag out if needed (I fill the kit bags when I do the ironing and try to remind them of any activities for the following day)
• Empty, clean and refill lunchbox (currently they are all hot dinners but there are some odd days where they choose packed instead)
• Get changed and hang up uniform (currently trying to get the older ones to smell/look to see if their uniform is dirty)
• Snack time

 

I have 4 children in 3 schools with different pick up times or clubs and each school does things slightly differently, so not all these points refer to every child.  Basically, larger families need to be organised! Even with this in place we can still forget kits/groups etc...

 

My youngest has only just started school so I need to support a lot of the points on the checklist but it will be worth it, as in time it will become automatic, like it has for his brothers.  It is easier to train the younger one, as he has his older brothers to look to for examples, so for me, it has been worth the work with the older ones.  Once the routine is completed, the boys are allowed 30mins computer time each which we fit in-between collecting any other children from clubs/dinner/reading practise and OT exercises. I do not use a routine for all of these tasks, as each day is different so we could not implement it as 'we do this every day' (our definition of routine) but we do have a visual schedule, so everyone knows what is happening for each school day.  We have one more routine which is the bedtime routine. 

 

We put the younger 2 to bed together and then the older 2 go to bed a little later (normally the younger 2 are asleep by then).  B sleeps in his own room and needs this space in order to go to sleep.  N has difficulty going off to sleep so will often read into the night.  We do not shower/bath the children every night but schedule it in.  Our eldest 2 have sensory impairments so shower/bath times can be really difficult - I will post about sensory issues another time.  The routine is mainly to get them to be cleaned, put dirty clothes in the wash, changed into PJs and into bed.  We read stories to the younger ones but the older ones like to read their own books to themselves.  We also do prayers and get them to think about things they are thankful for from the day.  Routines are an important part of ASD child's life.  It helps them to have predictability and makes them feel secure.  The routines can teach them and train them in the way we wish them to follow.  Personally I get fed up of routine, I like to just do things as and when, to not have my life all planned out but for now, this is how it has to be.

 

In order to help support the routines and to get everything done, we also use a reward chart.  Each child has 3 things to work on, which if managed earns them a point each, over the school week.  They can then spend or bank their points depending on what they wish at the end of each week.  Each child can earn up to 15 points a week.  What they work on, is normally what is causing me the most stress :) I use my emotions/stress level as an indicator as to what skills they need to work on next.  For example, we all have dinner together and we move onto pudding once everyone has finished their dinner.  My youngest would take forever to eat his dinner, which would upset his brothers. So rather than change the rule and break up our family together time (every family is different but to me it is a priority that we eat together as a family - it helps teach social skills and its a chance to catch up with everyone after a busy day) he can now earn a point if he eats his dinner in a timely manner (which is about a max. of 5 mins after everyone else has finished).   If he doesn't do it, we do not make a big fuss that he hasn't achieved it but try to use it more as an encouragement to eat his dinner.  We never take points away as a punishment, once earned they have been earned and we will not take that achievement away.  It is separate from the discipline process.  In the past I used reward charts with little success, I think that the failure was me not understanding how to use them correctly, expecting miracles from them  or pitching it at a level they did not properly comprehend - just because a child is verbal does not mean they have full understanding which also applies vice versa.  This is what their points can get them...

 

10 points = sweets/chocolate

15 points = 30mins extra computer time

30 points = pack of pokemon cards/magazine

45 points = a special activity with mum/dad or small toy

60 points = Treat outing ie costas, pudding

 

The reward charts work really well with my children.  I can adapt the tasks as and when I need to, as they are all really familiar with the process.  When we first implemented the routines and reward charts, it was hard.  We had to persevere and have faith that this would be a better way in teaching and training our children.  It paid off and they did quickly adapt as they wanted the rewards (AKA the motivator).  All the tasks are achievable for them and they have at least 1 task which is really easy for them to attain, so even on the bad days they can still be encouraged.  Reward charts can be tailored towards your child and your child may well need a reward at the end of the day and cannot bank it for a long term goal.  This is fine, they are all different and have different needs.  The main point of the reward chart/routine is that it is serving the family well, not us slaves to it. 

 

The most popular choice for rewards in our house, is the extra computer time!

Autism awareness - Back in the routine - Morning

So the kids are back at school and out come the visuals and back into the routine we go.  Our mornings need to be predictable and ordered.  This helps our ASD child to cope with what is happening, as he needs prediction in an already confusing world.  We do not run everything by the clock but we do it in order, so come the holidays and weekend we can still follow the order but we can do it at a relaxed pace.  We did not instinctively know we needed to do this, we have learnt this through trial and error and we honed our skills from doing the Early Bird Plus course.  This is a great course (run by the National Autistic Society for children aged 4-8years old) which has helped us learn so much about ASD (as parents) but you also attend it alongside your school.  We attended it with B's HLSA.  We both learned and worked together to put strategies in place.  If you get the chance to attend this course - please take it :)

 

Back to the routine, before the course and order, I found I was always yelling and getting stressed that no one would get ready and they were easily distracted and frustrated with one another (probably because they began the day with their mother cross).  I found we were late to playschool or groups and by the time we got there, we were already quite worn out.  Something needed to change.  I was watching Supernanny (We did not get B's diagnosis until he was 7, until then I watched, read and attended every parenting thing as his behaviour was horrendous and I had assumed I was just the worst parent ever and needed to learn better techniques) and the family were having the same problem and she devised a 'get set go' board.  I quickly implemented it and it worked great for us.  It was a board with 2 cars on a race track that stopped at each task ie wash face, brush teeth, get dressed etc and it was a race to the end.  I had to prep everything like clothes on the peg and have everything out ready for them to follow the routine.  I had to teach them to get dressed etc they did not learn this by instinct, like some children do.  The boys were at preschool age and really took to it - I think they also liked the competition.  Anytime they looked lost - I would not yell but refer them to the board.  I needed them to learn some independent skills as I would be trying to get myself and the baby ready. 

 

As time passed the board got a little worn and it changed to a 'visual'.  A visual is a prompt to remind your child what comes next.  We learnt on the course that ASD children are visual learners and that they respond far better to visual input then verbal - so my previous yelling really was a waste of time and energy.  My children have picked up reading quite easily, so I used photographs and words of the tasks needed and ordered them.  Most libraries offer a communication in print program that you can use for free which can help you tailor a visual to your child's needs, if you do not like to use photographs.  I did laminate these sheets, as now they understood what was needed, it does not mean they want to do it.  You can't get overly precious about the visuals, as they can get screwed up and thrown in the bin.  That's why I like using photographs and have my own laminator so I can just print another copy off when needed and the laminator just helps to preserve their life a little longer.  Don't be put off from using them if they are thrown or destroyed, it shows they are understanding what is happening but now they need a motivator to help them complete the task.  A motivator is a reward.    They need a motivator as they have absolutely no interest in completing the task.  I am the one who wants the task completed so I need to make it appealing.  They would quite happily turn up everywhere naked and dirty (at this age) remember they think differently to the typical person/child and do not see the need to comply with typical social unwritten rules.

 

My son also has no understanding of hierarchy, so typical people understand that you should do as I say as I am an adult and you are a child, this means nothing to my son.  I have tried to teach him this but as far as he is concerned we are all the same and it doesn't matter how old, who you are or what title you hold - he does not get why that means he has to do as you want and not please himself.  This jars with a lot of parenting methods.  I cannot strictly teach him to obey and I cannot give him the freedom of lots of choices either, as he finds this difficult to process and overwhelming.  Infact he prefers not to have a choice.  Which is why it can feel so frustrating.  The course helped me to parent in a way that is effective to my son and it works well with the whole family.  Having visuals helped to take away some of my sons frustrations that were aimed at me (as i wanted him to do things he did not) and moved them to the visual (which cannot argue back, get emotional or too many choices).  The visual also helps takes away my talking it through - which is just an extra layer for him to process, which can become overwhelming. 

 

As they have gotten older, they need less detail in the prompts ie now I can just use the visual - a written word of bathroom - wash and teeth.  They  know it means they need to go to the bathroom for a face/hands wash, dry themselves and to brush their teeth.  He now knows this and does not need it laid out step by step. so therefore we no longer need a bathroom visual. It has taken time to get there but consistent routine has worked.  We also use visual prompts to support other parts of the routine, to help keep the visuals as simple and easy to follow as possible.  We have an upstairs visual, a downstairs visual but its all part of the same routine.  The visuals can be used for all autistic children whether they are higher functioning or not so, as they are tailored to them.  For our family, the children are motivated by food so all tasks have to be done first before they get breakfast (this is the motivator/reward).  If you find this does not work, we use the 'first' and 'then' method.  'First' being follow the routine (which is not to change) and 'then' being the motivating reward which can change to whatever it needs to be, to get 'First' completed. 

A lot of work has gone into this but its worth it.  ASD children don't like change but it was worth persevering to implement a routine which works and serves us all.  Typical families probably just get ready, they probably have an order or routine without having to meticulously think it through or perhaps they just yell and it gets the job done but we have to plan it out and then we have to follow it or set ourselves up for a bad day as he will be out of sorts.

This is how are mornings work - all the children follow the routine;

Bathroom - wash and teeth
Deoderant
Get Dressed
PJs on bed
Comb hair
Make bed
Room tidy

Once this part is finished they can go downstairs to complete part 2 of the routine;

Family service task (each child has a different task)
Shoes on
Breakfast (together at the table when we are all ready)
Bible time and prayers

B's taxi shortly arrives and the others have about 10 mins till its time to go to school.  In case you are wondering about lunches and kit/school bags these are done the day before as part of the afterschool routine and are kept by the front door. Our actual visuals are word docs so it would not allow me to insert them, so have written them out instead.
 

The Easter Break

I hope you all had a fantastic Easter Break! I thought I would blog today about how our Easter break was spent.  I have recently been completely wiped out (virus) so was looking forward to a break from the norm.

Good Friday - We did our readings from the resurrection eggs, we had hot cross buns for lunch and we prayed and reflected on the cross, what it means to us.  We talked about sin, what it means, where it comes from.  Today we were staining the wood for our kids new bed and we went out to eat for dinner as a family.

Saturday - We opened the empty egg and talked about how Jesus followers must have felt.  We were still in reflection mode but we know that Sunday is coming.  We did Easter themed crafts to decorate the house ready for tomorrow. Today Jon and my dad made the boys bed.

Easter Sunday - Celebration day!  Today I was serving in worship so it meant how we normally do Easter Sunday had to change.  The children were still really excited but I had to be at church for 8am so there was no time to prepare beforehand.  Whilst I was helping Jon prepped a sweet dough in the bread maker. We all had a great time at church together.  The children had lots of fun doing various activities and crafts and we had a great time worshipping and hearing from God.  When we got back home, we had a light lunch and made resurrection rolls (we normally have these for breakfast at Easter).  The kids enjoy making the bread and taking their Jesus (marshmallow) dipping him in herbs and oil (melted butter then into the cinnamon and sugar mix) they then wrap him in the dough (the robes) and place in the oven (tomb) for 15mins and then once they have cooled slightly they open them up and see Jesus has risen (marshmallow has melted). I then prepped the lamb dinner and we had an Easter egg hunt.  The boys get Easter eggs from us and the family.  We take it in turns to hide each others eggs, so everyone gets a turn in finding their eggs.  We couldn't do a free for all hunt as the ASD child wouldn't be able to cope.  It all has to be planned and he needs to know what he is getting in advance as he does not like surprises.  This is our normal.  Once dinner has been eaten, they are allowed to choose an egg and eat it all if they wish.  The rest get saved into their sweetie bags (yes they still have sweets and chocs left over from Christmas).  We all sat down and watched a film together.

 

First week of the hols:

L has graduated from a toddler bed and now he shares a triple bunk with his other 2 brothers. Monday we spent finishing off their room and chilling out (we were all quite tired from the day before).

 

Tuesday - Jon was back to work and we did the housework together.  I think its good to teach the boys how to do jobs (yes it would be quicker to do it myself) but they do earn extra computer time if they do it properly and with a good attitude - which they did.  However, come the afternoon I felt like a peacekeeper as fights seemed to break out all the time!

 

Wednesday - Today we celebrated The Zones 1st birthday.  We had a great time at the party with other autistic families.  I feel confident to take the boys here by myself and most of the time its successful... when its not, we are not judged but help is offered.

 

Thursday - My lovely friend helped me take the boys to their dentist apt (it was a rough pre morning) but the visit went well and we went to the park afterwards.

 

Friday - Jon works from home.  Its great to have an extra pair of eyes and hands around.  We decided to have a family BBQ in the afternoon, enjoying the lovely sunshine.

 

The weekend:- I help run The Zone Saturday session and on Sunday Jon served on the PA team at church.  In between this we rested.

 

Week 2:

Monday - Chill out day! Today we did nothing and it was great.  The boys seemed to get on well and spent the day on the trampoline, playing football, colouring in plants v zombie pictures (thanks to free colouring pages from the internet) watching TV, reading and of course their computer time.

 

Tuesday - Housework challenge.  The boys did really well and earned their extra time - only problem was the server went down... luckily they accepted being able to eat from their sweetie bags instead.  I was feeling brave in the afternoon and took them to the park (near our home) by myself - we survived! Might seem odd to some but sometimes these little trips out can end really badly for us.

 

Wednesday - Zone Day.  The boys really enjoy playing games, the go-carts and the bouncy castle. Child number 2 had a moment towards the end but we did get home and had some quiet time to calm down. This is normally the TV.

 

Thursday - We went to Frensham great pond with my lovely friend and helper.  The boys loved playing at the beach and dipping in the water.  They also enjoyed yummy ice-creams, aka bribery to get them to come home.  We also found out J will be going to the same junior school as N is September :)

 

Friday - I took the 3 older boys donutting with The Zone.  We go with The Zone as they hire the whole slope out and I know I will be with others who have similar children.  They normally really enjoy these sessions but child number 2 kicked off before we got going (helmet worries) and child number 1 kicked off during the event, so we had to call it a day. Thankfully Jon works from home on Fridays so it was easier to separate the children and as child 3 (got the brunt of child 1) we made chocolate brownies together, which he loves - well any food, he loves :)

 

So that has been our Easter holidays - I have really enjoyed not getting up early, not remembering who needs what kit on what day for whichever club they are doing, no school pick up juggling acts, no homework battles, fun activities, spending time with my boys, celebrating Easter and the beautiful weather!

 

 

Autism Awareness - Carers

The other thought/judgement, I had (before I embarked on this journey) was about carers for disabled people. That caring must be in your heart from the beginning.  That somehow they were just more patient, kind, caring, a selfless breed of people.  It was all just natural for them.

 

Well now that I am one of those people, I can assure you, it was not in my heart from the beginning... I have had to learn - learn fast and learn hard.  I knew nothing about autism. I have read books, searched websites, blogs and been on lots of different courses, met with lots of professionals to learn all I could in order to understand my son.  As his mother I have to be his advocate - so I needed to learn.  Information and help is not easily accessible, you have to find it and prove that you need it.  I believe the character qualities (to have an outstanding patience, kindness, compassion) that I associated with carers, have developed along the way, born out of love for my son.  I am no different to anyone else.  I have merely done what I have had to do.  Awareness is needed as it is not just the disabled person that is affected.

 

I think I believed that disabled people always just got what they needed, when they needed it - that is not ours or others (from the different people I have met) experiences.  Health and social care systems can be so stressful and time consuming to navigate through and it appears you have to be at absolute breaking point/rock bottom to access some of the services - or have deep pockets to afford private.  Education, is another great battlefield.  Every child has the right to an education in our country, but accessing it - is not always that simple.  Resources are tight and I feel I have to fight in all corners to be heard, to get my son the help he needs.  Dealing with lots of professionals/agencies, following and discerning which advice to heed (as it can be contradictory) can take away the freedom from just parenting your child in the way you had wanted and it can be overwhelming at times.  This all means lots of appointments and meetings.  All this fighting is time consuming and draining.  This is all on top of actually caring for my autistic child, not forgetting of course my other children and husband. At this point in time, I cannot entertain holding down a job/career and for now that part of my life has to go on hold.

 

I now have a great compassion for carers.  At the end of the day - I do not have a choice, he is my son. This is not a relationship I can simply walk out on, as its become too tough, too much or he has become too violent, he's pushed us too far.  There are many times when I have felt it all unfair, that this is not the life I would have chosen but this IS the life I have.  When help doesn't come and all there is to do is to grit your teeth and just hope this season will pass quickly, IT IS HARD.  There are times when it does get me down, when I want to rebel, when I want to scream at the person who is saying 'yes but you take it so well' or 'it just comes naturally to you' and whilst I smile, underneath I want to ask them 'so what are my options, my alternatives then?' There are no other options, he is my son - despite all that I may find difficult or unfair, I love him.  Its not really as simple as saying social services you have him. To be honest, I don't think social services would take him and it would just end up being another meeting to add to the list, whilst they try to convince you to attend a parenting course...  Love stops you from giving up, it helps you through the tough times. 

 

Being a carer is really hard.  I feel as though I have lost my identity at times. I understand why carers are considered vulnerable - I have felt this many times.  Stress levels are high, along with depression and marriage break ups. Career aspirations, desires even hobbies get put on hold but my capacity to love has grown, my compassion and empathy for others has increased, strength I never knew I had, has emerged.  I feel I have had to give up being me, at times I have forgotten who I am.  I live this everyday and so I guess when the pressure is on, it is your character that comes through.  I sometimes feel that I am more character than personality.  I get fed up of looking at my facebook feed and seeing autism, kids and Christianity - where did I go? why do I always have to be so responsible and sensible now? It is when the quieter times come, when things are calmer that it can the hardest, as you have the time to think and wonder who you are... When these times come, it helps me to reflect/heal from some of the things we have just been through (AKA write blog posts) so although I appreciate less drama, it can just become an internal battle.  When I look inward, it can be depressing, to think of all I have lost, that the best thing to do is to look outwardly and look at what I have gained.  There are times when I look at other peoples problems and think 'what on earth are they complaining about? really that's a big deal???' and I imagine there are plenty of people who would say the same about me.  I know we are all made differently and our capacities are made in different sizes.  This helps me to have empathy for others - we all face our own battles.

I feel that we are very blessed in many ways.  I have learnt a lot on this journey (often things I have had no desire to learn about).  I want to raise awareness for autism as so much work goes in behind the scenes to be 'normal' that often it just becomes dismissed.  I am grateful to have become a mother and I am grateful to have a husband who helps us in so many ways.  I am grateful to have my faith, it helps me to remember who I truly am, that I am truly loved and that there is purpose in what I do.  At times, I do get cross at God, I tell him how I feel and God has given us great provision and help through answered prayer.  There are times when I don't 'feel' like it but I know I can trust in God, he has never let me down.  Others may look at my faith as a crutch, a cult - picking on a vulnerable person or completely a figment of my imagination but to me it is a very real, important relationship.  My faith helps me through the tough times - not in a Ned Flanders (character from The Simpsons) kind of way but gives me hope.  I do not always behave in a Christian way - I am human and make many mistakes and have many shortcomings - this does not mean I have given up but am working things out, learning lessons as I travel through life.  God does not demand perfection from me, I am accepted as I am.  Other Christians or people like to throw the verse 'God never gives you anything more than you can handle' and quite frankly I would quite like to throw that verse back at them with rocks tied to it, as I feel I have been pushed to the brink many times but I feel God takes me to this point, so that I will declare my absolute dependence on him and together we will handle the situation, nothing is too big for Him.  My friend helped me to see this.

At this point, I guess facebook is very reflective of the fact, my life is about autism, my children and God (not in that order and I do have a husband in their too).  I don't feel passionate about autism at all, its just one of those things I have had to deal with and cannot escape from.  I do feel passionate that my calling is to be a mother, and whilst the world may look upon this and say yes a mother but what else are you going to do? as if I need an occupation to be seen as significant - being a mother, a carer is enough.  I could not do any of this without God helping me.  Autism is part of our life, not a choice so I want to raise awareness, acceptance and understanding as I know I came from a place with none...

Autism awareness - My Children

I have written about our autism story and how he came to get the diagnosis on previous posts.  Please look under labels section - ASD Diagnosis.  It starts from 10 fingers and 10 toes. 

He is now growing into his own person and will be starting secondary school this September.  Since he has had his diagnosis - life has been a rollercoaster.  Some parts of this experience I am still healing from, which makes it difficult to write about.  I would love to have a 'and he got diagnosed, it was all clear what we had to do from then on, services were all to happy and easy to assist and we all lived happily ever after' story to write, but we don't.  It is much more a 'we fell down a rabbit hole, into a completely different world, everything we thought we knew or had hoped for, was turned upside down, we had to hunt for information for survival, perform various tasks and amazing gymnastic feats to get the help he desperately needed - a dream that you could not be woken up from' type of story.  That aside, it does not mean we don't have positives or happy tales along the way. 

 

My son is high functioning and as such has a diagnosis of Aspergers.  He is clever - I don't mean a every parent thinks their child is clever kind of way, I mean he is high achieving academically.  He attends a special school, so I think others tend to think 'he is a bit slow'.  He is not, he has levels that exceeds mainstream school expectations.  He is at a specialist school because he cannot cope in a mainstream environment.  There are not many schools for my child (because of his academic abilities) and we have been extremely blessed that he attends a specialist ASD school, which is also sponsored by the NAS (National Autistic Society). This has been a massive battle for us.  Specialist schools are not all the same and they are not automatically assigned to children who need them.  It has been a heart breaking journey, watching him struggle through mainstream, managing different professionals (out reach workers, behaviour support specialists, CAMHS, educational psychologists, paediatricians, consultants), statementing process, exclusions, battling with the authorities, paperwork, proving and disproving what he is and is not capable of, hunting down a school, home educating, contacting MPs... I have to say - It was completely worth the fight.  His school has transformed our lives. 

He feels good about being autistic, that it is a part of who he is and he does not want to change it.  He is in the right place for him.  His school is a great blessing! Life is not all rosy though, as he still has autism and we still face lots of difficulties because of it.  The school are brilliant at recognising the difficulties and helping him through it, teaching him in a way that helps him to learn - overcoming the barriers.  The plan is for him to continue here (just waiting on his EHCP - the new statement) even that is not as simple as it sounds.  We are still battling. 

 

I think our son does confuse others perceptions of disability.  He is clever, sporty, great sense of dry humour, he looks like any other child of 11 and he is very articulate but struggles greatly with communication.  This may seem contradictory but he finds it almost impossible to communicate his needs/feelings.  For example, he will not buy anything from a shop, as his anxiety levels of talking to someone he does not know about a need/want (ie to buy sweets) is too great, he would rather be hungry/thirsty or lost.  He also has other communication difficulties, even though he appears very articulate, his autism can often be overlooked or commented on as mild by others, at first glance because they do not have the in depth understanding about autism.  He finds other people really hard work, we do not conform to his perceptions - we are erratic.  Social functions are really draining for him.

He cannot cope with crowds of people.  He becomes extremely anxious about doing or going somewhere new, even though he wants to do it.  He is sensory sensitive.  Overloaded by tactile, noise, visual stimulus causes him pain - unmanageable pain.  He wants to avoid this pain, therefore he will do what he can to avoid or stop this pain.  It is often the lightest touch that causes him the most pain.  This worry (sensory pain) can also stop him from going somewhere new - it causes anxiety.  We have to follow routine, order and plan/manage in anything new.  Change is very scary because of his anxieties.  These anxieties, if not managed or ignored lead to meltdowns.  Meltdowns are not fun for anyone.  In his case, they can be dangerous, they have to be handled in the correct way to help.  Meltdowns are not always aggressive in ASD but for our son, they are.  Some days are bad days - we do not go out on these days.  Just because you have not seen him meltdown does not mean it doesn't happen. Plans have to change and that's just the way it is. 

Autism is not endearing like other disabilities may appear.  When my child is having a meltdown, no one has ever said 'oh look at that poor child, he is obviously not coping very well, his anxieties or fears have overtaken him, how awful for him to feel like this, that poor helpless child' People are scared and look disapprovingly at us.  They wonder why I am not being more angry, why I am not disciplining him, why I don't hit back, why I am being calm, etc, etc as my child is physically attacking me, biting, destroying whatever is around, running away/climbing or hurting himself.  We are judged - I see them staring out of the corner of my eye.  Honestly, I don't have time to care about them at that point, I do what I have to do, to calm my son down.  I speak in a certain manner and use sign language to not only help him but to try and show the audience gathering around us that there is more going on than they initially thought.  The triggers are not always obvious and I have to think quickly, I have to remain calm - I cannot add to his distress as it will make the situation worse.  I cannot discipline him out of a meltdown - it is not the same as a tantrum, we are not dealing with disobedience, this is not his choice, he hates this.  I cannot physically chastise him out of a meltdown - it is not a naughty behaviour or a case for showing who is stronger, I cannot (not that I ever would) scare him out of a meltdown - he has reached the point of his anxiety/fears overwhelming him so much, that he cannot cope with how his body is feeling and cannot process another feeling/word. It cannot be rushed through.  If I talk too much or give too many options, the situation will become worse, as he will not be able to process the information, let alone act on it - I have to be patient, I have to show empathy to him - he cannot see the situation from another's perspective (it is not possible for him to do this) but I can. 

I have to think big picture which can look to others like I just give in but I am not, I am thinking and prioritising what is the most important and what is it that ultimately needs to be achieved.  He is scared and I need to show control to help him through.  Once he has calmed down enough, I have to be vigilant as a tiny action/comment could lead us straight back to meltdown.  I remember reading, it takes at least 90 minutes and up to 3 days for the body to chemically recover from a meltdown.  I have been on courses and have learned the best way to deal with his meltdowns from professionals and have learnt from experience what works best for my son - I am not being too soft by dealing with him in this way, as others who just witness an aggressive child acting out may think.  Autism awareness is needed, as sometimes (granted not always) there is more going on when a child appears to be having an outburst.

I also have to consider the fact I have 3 other children, younger than him, so they are not old enough to look after themselves - this can make going out without an extra pair of hands foolish/dangerous.  As I said above, some days are bad days so planned events just won't happen and yes, it can be very disappointing for them as well as for me but their safety comes first.  This not only effects his siblings in terms of what we can do as a family, but this is what they see - this is their normal everyday life and it is hard for them.  It is hard for them that they maybe the target of his aggression, the stares from others, watching their mother get hurt, things being destroyed, seeing their brother so distressed, that the brother they love and play with, change so much in a meltdown and trying to understand what this is all about, as a child, when so many adults struggle with it.  It is hard for them.  Thankfully, we have learnt a lot along the years and not everyday is filled with meltdowns (there was a time when it was).  We may have to do things in a certain way, which can be restricting at times but it is better for all of us, to do so.  My son copes so much better now, than he used to and as he gets older and learns more coping strategies I am hoping the meltdowns will become less and change from the aggression.  His younger siblings are carers, without even realising it.  They have learnt to adapt, to stick together in a meltdown, when to get help, to have empathy for someone who cannot show it back, they see the stares too - they hear the comments, leant to care and to love. They learn this and more each day, to compromise, the disappointments, to deal with a stress that their peers do not face.  They are not responsible for any of their brothers care but they see the challenges and face them with him, as we are a family.

 

I don't want this post to be negative but wanted to highlight SOME of the difficulties he faces without being too revealing about him, as I appreciate he is growing up.  On first meeting my son, you may not notice or even think that he could possibly or have the difficulties I describe above - do not underestimate his autism.  Just because he does not necessarily fit a preconceived idea about autism, just because he is high functioning does not mean he is not profoundly affected by autism.  He would not be in a specialist ASD school if he was just a bit mildly autistic, they are not easy to come by.  I also don't want those with younger ASD children thinking or believing there is no hope - because there is!  The battles and the time we have put in, has been worth it, as over a long period of time we have conquered many things! This gives me hope for the future, that my autistic child may well grow up to be a successful happy adult.  By successful, I mean to live and function independently in the world. Here are some examples of the problems we used to face but now no longer...

 

• Would only eat from a red plate
• Sandwiches had to cut in 4 squares
• Had to eat sandwiches, a cheese and a yogurt everyday, regardless of the day ie Christmas
• Malties for breakfast only (he had this for years)
• Smearing pooh from his nappy (yuck)
• Eating weird stuff ie paint, slug
• Running off randomly
• Overly friendly to strangers (now we have the opposite)
• Climbing everything (he still does a bit of this but no where near the scale he used to)
• Escaping
• Turning on and off light switches/buttons
• Opening all cupboards and doors
• Obsessions have changed and morphed into new ones...
• Getting dressed (undressed fine)
• Not being able to be left in a room by himself (he said he felt like the room had eyes and would close in on him)
• Reading Thomas the tank engine books, over and over - and over again
• Looking at the periodic table, a lot!
• Moshi monsters!!!!
• A short trip to town/supermarket is now possible :)
• Climbing out of windows - whatever floor we were on
• Being constantly on the go
• Just lashing out (he will now give a verbal warning if you are doing something he needs to stop)
• Following instructions
• Helping and doing something for others (still a work in progress but will do it)