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.
 

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)

Autism Awareness

So this week, is autism awareness week and April is autism awareness month.  The aim is to raise awareness of what autism is, in the hope that it will increase understanding and acceptance. 

 

I am a mother of an autistic child. I often refer to it as ASD - meaning Autistic Spectrum Disorder and depending on when you got your diagnosis, it could also be known as ASC, HF (high functioning) Autism, Aspergers and there are probably more names out there... 

It is a life long developmental brain disorder. The brain is typical but how it 'wires up' is different.  It is a life long disability meaning there is no cure.  It is a spectrum disorder meaning that each person with ASD is different - how it affects them will differ and how much that impacts on their everyday life will differ but they all have difficulties in 3 main areas - social interaction, social imagination and social language.  It is also widely believed that they all have sensory impairments.  I think that this is even being considered as part of the diagnostic criteria.  This means that how they interpret information gathered by the body's senses is different to how typical people receive this information.  My son also has a diagnosis of Sensory Integration Dysfunction and modulation difficulties, otherwise known as Sensory Processing Disorder (SPD) - again it depends on when/who diagnosed.  Confused yet? It can seem pretty confusing, I am used to the initials but it does take a bit of time getting used to it all and I am part of it.  I can imagine it is hard for those with no knowledge to really understand it all.  I believe (now) all diagnosis are named Autism - regardless of where you appear on the spectrum. For more information click here 

The cause of autism is yet unknown.  It is believed a possible genetic factor perhaps even combined with environmental factors. My husband and I often wonder if it is genetic... (AKA 'that is soooo you' discussions) so when I came across a blog with an Autism Spectrum Quotient test, we thought it would be fun to take it. Click here if you would like to read and try. Please note this test in itself does not give you a diagnosis.

 

I had absolutely no clue or desire to know about autism or any disability until I had to - my sons diagnosis.  To be honest if there was an indication that my son had a disability when I was pregnant (which was before I became a Christian) the chances of termination would have been high.  I didn't hate disabled people, I just had no experience, understanding and no knowledge. Which I guess equated to fear and exclusion, hence believing there would be no way I could raise a child with disabilities.  I didn't really give any thought to disability at all.  I believed how disability was portrayed in the media, as I had no other sources.  I think I thought subconsciously, they were different and lived in a different way to the rest of us.  Whilst I thought I had compassion for them - yes they should be entitled to help and anything else they needed, the thought is where it ended - I didn't really want to be part of their world or learn about it. 

More and more people are being diagnosed with autism, and they can't be segregated from the rest of the world. We are all in this together, therefore awareness is needed to stop the judgements, the segregation, take away the fears and instead increase acceptance and understanding.  This is 'our' world.

I now think differently - I have seen how difficult the world can be through my sons eyes, and my heart breaks for him.  I now have so much more compassion for those with special/additional needs/disabilities.  Autism is an invisible disability - it is not obvious at first glance.  This makes it hard/unwilling for some people to accept that there is anything wrong.  It is a developmental disorder so as a baby, he was just like any other baby, but as he has developed - he has grown in a different way.  As it is invisible and as it is a spectrum disorder, it is hard for people to put them all in one neat little box - each autistic person is different, therefore some find it hard to accept it exists at all.  Some people find it difficult to accept as 'it wasn't around in my day' well it was, it just wasn't as well known.  Also it was only recognised in the last century and as awareness spreads, older people are now also being diagnosed.  In the past, they may have been segregated or labelled differently.  The rate of infant mortality was higher and often children like this, were taken and raised in homes so they would have not been seen.  From our family tree, my granddad had forgotten about a sister he had.  She had epilepsy, so at a very young age she was taken to live in a home, where she spent her whole life.  Others just see the behaviours and decide it is down to parenting or the child choosing to be difficult.   Awareness is needed to change perceptions and accept that autism does exist, it is very real.  Some people do not like to refer to autism as a disability.  However, our experience is that it is disabling. It impacts all our lives.

Over this week, I will blog some more about what our lives are like living with autism.

 

 

Summer, Autism and Westpoint!

I am so thankful to have had my husband off for 3 weeks of the summer holidays.  We have spent 2 of our weeks off, going on lots of day trips and making memories as a family together. It has flown by and its been so nice re-connecting together. 

 

Our last week together, we went to Westpoint, camping with our church family, as our holiday.    To someone who is not used to this, I would describe it like a festival, just under 4000 people gathering but with Jesus at the centre! There is lots going on to cater for a wide range of people and interests.  Morning and evening meetings with great teaching (you can select what you are interested in through the seminars) and worship times (big bands performing rock Christian songs).  The children are well catered for in their groups which are separated into age ranges, including a youth program as well as a special needs group (the ark).  The afternoons were filled with even more activities ie nature walks, street dancing, cooking etc or sports events or you could peruse the many stalls, inflatable parks or just chill out with friends. Our church catered for us, so we all ate together and for me it was a really nice break from cooking.  My husband has many talents but cooking is not one them. I have come back feeling really refreshed and ready to embrace the start of the next season. I can't believe I feel this way after being camping! I would say this is all down to God answering our prayers that Westpoint would be successful for us.

 

The last time we went to Westpoint was 2012 and it was a negative experience for us, so I was really nervous going back again. In fact just going on holiday for us is really hard.  My son really does not like the change in routines, so our last family holiday (also in 2012) was really negative and we haven't been away (just us) since. Last year, we went away for a couple of days at a theme park with my parents and my sister and her family and we enjoyed that so we are slowly healing from the 2012 experience and decided we would try Westpoint again.  I am also the type of character that doesn't like to be defeated so I wanted to go back and face it. Lots of prayers prayed :)

 

How we did each day - We didn't sign up to every organised event or try to attend every meeting.  If we had approached it this way I think we would have been frustrated with one another and perhaps been overwhelmed by it all.  We took a flexible approach to each day and it worked well for us.  I had 2 children attend the ark and they both loved it. Admittedly, one of them bolted over the fence as soon as I left the tent but the staff worked with him, there was no big panic (not on the outside of their faces) and all was well.  That was the first and last time he did that, as he enjoyed it so much.  That in itself, is quite an achievement for him.  My other child didn't want to leave all the sensory equipment and really enjoyed hanging off the big bouncy equipment.

 

The afternoons we kept flexible too.  My boys really enjoyed playing nerf gun wars or football with the other boys from our church. We did some scheduled activities but they also really liked meeting up with their old friends from our previous church. 

 

The evenings, we attended the worship together then would get the younger boys to bed.  The older boys could stay up a bit later and enjoyed playing uno/card games with their friends.  There was evening groups for the older children but by that point in the day my older ones were not up for that.  Once they were in bed, we chatted with friends.  The meetings I went too, I really appreciated.  The teaching was really good and inspiring. I found the evening meetings didn't work too well for me as I was too tired to concentrate but I really enjoyed the morning bible sessions and a choice of seminar or extra worship. I was really blessed by this. Doing less meetings helped me to focus on the messages I did hear.

 

I loved seeing the boys make their own entertainment and no minecraft/electronic games were played! I loved listening to my little boys in their sleeping pod discussing their day and what they had enjoyed, snuggling up to one another.  It wasn't all perfect happy families, but we expected that and would have either quiet time in our tent or take a child off for some space.  At the end of Westpoint the kids (and us) are really looking forward to going again next year!

Summer, Autism and The Zone!

2 years ago I wrote about our summer and how having an autistic child effected us.  When I look back it was a very hard time for us.  What I wrote at that time, touched upon our lives to give a flavour but I held a lot back.  It was hard (emotionally and physically draining) - there is no other way to put it. This is because we were still new to autism, accepting the diagnosis and were unsupported.  Its not that our friends or family at that time didn't care, its just there was not a lot people could do to actually help.  I didn't know of any other parents that I could talk to about raising a child with autism.  Whilst some friends knew or met someone with autism, it is not the same as raising a child as each and every person with autism is very unique.  I was still getting over the stereo typical image of autism myself and understanding what the diagnosis meant for us.  There were not any support groups or activities, we were left to get on with it. The one disability play scheme in our old area, expelled us. There was a support group for families with disabled children but it was catered for children with more obvious disabilities and it was hard to fit in when your child's disability is hidden, meaning he looks like a typical child.  All in all, it was very isolating. I didn't declare all the things we went through in our day to day but if people asked I would tell them.  I guess at the time I was fearful at what our future held and that it would put others off from us, therefore isolating us further. A lot of time and energy went into appearing 'normal'.

 

Whilst Farnborough may not appear to offer anything compared to Poole and Bournemouth, there is actually a lot here to do for us as a family.  Farnborough may not have the beach or the shops or the nightlife but what they do offer is accessibility.  When we first moved we attended the National Autistic Society (NAS) Farnborough Branch, it is now a charity in its own right called 'The Zone' This has been a haven for us.  There are weekly afterschool clubs and a club that runs every other Saturday.  At these clubs there is the chance to socialise (as much as ASD children do) with lots of laptops (minecraft), latest consoles, handheld gaming, crafts and toys.  In the summer sessions, they also have bouncy castle, outdoor toys and go carts.  Oh and I mustn't forget the biscuits, as my kids love them.  It is also a chance to talk to other parents who are experiencing the same things as you and makes you realise how 'un-alone' we are.  Its a place to feel 'normal' when family life seems very un-normal compared to everyone else or how we expected it to be.  There is no judgement when meltdowns and wobbles occur, special interests are welcomed too. 

 

During the holidays there are activities scheduled both 'in' and 'out' of The Zone.  My sons really look forward to this and it is for the whole family to access.  When we were going through the diagnosis I would have loved to attended a group like this, it would have helped us so much.  As my son didn't fit my perceived image of autism it led to lots of confusion.  The day out trips are lots of fun.  My children loved the London Zoo day out, Thames Valley Playground, bowling, donutting, laser quest - lots of things I wouldn't even of been able to dream about doing without lots of support or personally hiring out the venue exclusively.  There is a fortnightly coffee morning to help with the mountain of paperwork, a sensory and book library.  It is a great support and as the children get older there is the Teen Zone.  I am also thankful for their Facebook page, a chance to talk and air grievances in a closed setting. Its also a great chance to find out about different things going on in the area and where to go to get support on different issues.

 

Hampshire also offers Shorbreaks, Gateway card which funds 1 to 1 support in mainstream activities, which we have also used.  This has had mixed results.  They also give funding to groups like The Zone.  This is why I shared the petition to stop the cuts to Shortbreaks funding as it helps us as a family do things that other families would take for granted. 

There are specific disability play scheme offers too.  My son is currently using Rushmoor and East Hants Kids scheme, for ages 8+ and has really enjoyed the days out (once we finally manage to get him on the bus).  We also go to the monthly swimming fun sessions with Disability Challengers.  Our children really enjoy this and its a great chance to just have fun together as a family. 

We have also been to the Lions fun-fest fun day which is for families with disabled children.  This is held yearly but my children have loved all the fun games and rides.  We have also done craft activities for families with disabled children organised by PAGS.

So whilst I do miss the beautiful beaches and our lovely friends from Bournemouth and Poole, there is plenty to keep us busy here!

 

Summer, Autism and Schedules!

Well the summer holidays have truly begun.  Whilst many parents are looking forward to unwinding, having later starts, no more pack lunches or homework worries, looking forward to going out and doing activities with their children, our life may look a little different...

 

B has completed his first year at Thames Valley School.  He has really enjoyed it, him attending this school has made a massive improvement on his behaviour and positively impacted the rest of the family's wellbeing, plus he has made a good friend.  I am so thankful for this! The downside to this is that he was NOT happy about school finishing for the holidays. B needs routine and structure. He needs to know what to expect and when to expect it each day.  I know lots of parents may say well every child needs this and to a certain degree, yes they do. It is different for B.  His ASD means he does not have the social imagination to be able to put together how his day will be, what is going to happen and what he needs to do and this makes him very anxious.  He has social communication difficulties which means he cannot (at this point) put any of his anxious feelings into words.  When highly stressed and anxious, he shuts down his communication and this includes him listening to reasoning or consequences. This anxiety and inability to understand this communication can lead to him lashing out/meltdown.

 

There is no cure or medication which will make it all better.  That does not mean we or B are 'doomed' it means we have to teach him in a different way and it is NOT a quick lesson or a simple explanation that fixes it.  After attending an 'Earlybird plus' course, we learnt a lot about autism including how to empathise and see things from a different perspective, visuals - they were really big on this!, communications and different strategies. As B was diagnosed later at 7 years old, I knew lots of the common parenting strategies did not work for him, infact we tried so many, read so many books and we sometimes ended up further behind then in front! I knew we needed to try something different so we went for it. 

 

At first he hated the visuals, and I mean hate, however we remained consistent and he accepted them.  We learnt through trial and error what was and wasn't acceptable to him.  He does not like to stand out as being different so his visuals need to blend in and be appropriate to his intelligence level which is high. Children with ASD are visual learners so a visual sequence of what is happening or expected, is what I mean by visuals.  Our early ones look quite professional, all Velcro and laminated (this is so when he throws them as he didn't like what he had to do, we can easily rescue it) now they are hand written and colour coded, as he can read and interpret written information easily.  When we first started they caused lots of meltdowns and I wondered if it was worth all the effort but now he reads them through and accepts them! (waiver: most of the time) A massive step forward and it proved to us, that they do work but it takes time and consistency. He doesn't refer to them often as he has quite a photographic memory and he probably still hates them deep down but has come to acceptance.

 

Anyway, so before summer fun can begin B needs to know what to expect and when to expect it to keep his anxieties at bay.  Our morning and bedtime routine visuals do not change, we keep this at a constant always.  We then have a daily chart of all the things that will 'definitely' happen each day and those in a different colour happens 'most days' but not all, for example if we are out on a day trip - he will get lunch (a definite) but he may not have computer time (most days).  He does accept this as he has had advanced warning to process and accept the change, we can't just spring changes on him and expect him to accept it.  We then put up a weekly schedule, so he knows what the planned activities are for the week - this is kept simple and one week at a time.  As a family, we use reward charts to train our children and this chart is up so he knows what is expected of him and finally we have set personal challenges for our children to aim for during the holidays.  They like a goal to work towards and find it fun to have a challenge.  This does not mean we will have a meltdown free summer but it will certainly help. 

 

On top of this, B also has a sensory diet to follow which is an activity every 2 hours, to help him so he does not sensory overload which also causes meltdowns... B also doesn't understand 'relax, just go play' He doesn't do play, he ends up fighting with his brothers or mucking up their games as his social imagination is not there.  It has improved but his social interaction skills, especially in play, are not.  Unless he is watching TV or on the computer, he really doesn't know what to do with himself and this is stressful for him. If I tell him 'go make a junk model' He will need me to sit with him whilst he does it.  If I want him to do something other than the TV or computer I need to help him do this.  If I am lucky, he gets into it and I can sneak away.  In our house we have a 30minute computer time rule - each child has 30minutes play only.  With that in mind I also have a list of projects based on B's interests to keep him occupied during the at home days or downtimes after an activity.

 

Whilst I do really enjoy organising things I personally hate having every part of my life planned out.  I prefer to be spontaneous, to wake up and go with how I feel but B is the complete opposite and I have had to accept that this is what he NEEDS to cope with the day and ultimately I want the best for him - not just meet his basic needs.  It is hard and it is exhausting. I have booked him onto a couple of play scheme days to have a break (although that comes with another set of issues which I will explain another time) and he needs time to adjust to 'new' people so meeting up with others can be tricky too. As I said before, all of this doesn't guarantee a meltdown free summer but does help us as parents feel more in control.  Thankfully my gorgeous husband is off for 3 of the 6 weeks to keep me sane.  So to us the holidays are not really about unwinding lazy carefree days (as much as I wish it were) but structure and scheduling! We will have fun in our way, we will create happy or at times just 'create memories' for our family.  Whilst my son may seem high functioning and even normal to the passer by or acquaintance, a lot of preparation and hard work goes into this behind the scenes. 

 

I will try and post some more during the holidays of what we get up to!

 

Happy holidays!!! 

Where've i been...

Well it has been a whirlwind first Autumn term.  I knew it would be, so hasn't left much time for me to post, so thought I'd explain a little what we've been up to...

I now have 3 children at school and 1 child at home. However I have not had anymore time at home... In fact life has been so busy I feel I barely keep up with the day to day running of life and not really doing anything in the way I would like to. I guess everything comes in seasons and his ones a busy one!

The reason why, life is at such a fast pace for us, is that help is on its way.  After the holidays, the doctor referral and statement process has been in action.  We were referred to CAMHS for extra help and support, during this appointment our son 'presented' in clinic.  Although highly stressful, they could see for themselves what we are dealing with.  From this, we are now part of the BOSS team - an intensive assessment support service.  Also alongside this we have been going through the statement process and part of this (getting help in terms of supporting his education) more professionals are now involved.  We/I have been seeing someone or on part of a course at least once a week.

This may not seem a lot but it is constant arranging of care for the other children, time to then action and process said meetings, as well as doing family life with 4 young children.  Also the ASD factor is there and very much part of our everyday lives, which effects us all. He has 'presented' pretty much everywhere, which is a sign that he is not currently coping with how life is at the moment. This takes its toll on everyone as it takes time to recover.  This makes our world smaller, as we try to keep a low arousal presence for his benefit.  We do keep his life to a structure/routine and try to minimise his face to face contact with the different professionals to keep his anxieties at bay.  It has had a big impact on one of his siblings and therefore more time has been needed to help him also, as well as diffusing B.  We are grateful for the help (that is coming) and we are willing to do what we can to help our children.

I can completely understand why parents of ASD children choose not to go places and can become insular.  I don't think you can appreciate the stress levels of it all until you walk in our shoes.  Our son looks completely normal and you can have 'normal' conversations with him, when he is in the right place.  Public tend to be less sympathetic with families and children if you do not 'look' disabled.  The perception is that 'he is trouble' or that his parents have failed him as there is no outward tell tale sign he has a brain disorder.  When his siblings act up because they live with the emotional stresses of our everyday, they are then seen as 'trouble makers' or to keep away from them as they are naughty. This is purely because they do not see the full picture that is in front of them. Sometimes I have the time and energy to educate, other times I don't.  Some do not see the chaos we live with and therefore presume its only minor or just happens occasionally but that is not the case - autism doesn't have a night off.  The other side to this is because he has Asperger and is verbal, it is seen as not as bad as those who are unable to communicate with ASD.  Obviously, I've not personally experienced this but after talking to a lady who's son does severely present in this way (classical autism), she still believes that what we go through is more challenging.  With her son, the choices are simple and his needs although very hard, it is easier to know what's best for him.  With our son, the choices are complicated, his needs are complex and it is not straightforward.  

 

Whilst some people have a thick skin, others have to develop it over time.  When we have been out and about and our son presents, normally I'm so focused on dealing with the situation that I don't really notice everyone else.  I have also done a course - sign a long - which helps aid communication for ASD and when I change my manor, language and start signing, it is normally a clue to those watching that all is not so black and white and they tend to back off. 

Also with ASD children in order to help avoid meltdowns, it is important to keep their environment, low arousal.  My son is particularly effected by sensory.  We naturally drown out noises/lights etc and concentrate on what we need to, whereas for my son everything hits him in one go.  All of it has to be processed in his brain and then complete the task at hand.  This is highly stressful, as you can imagine - trying to complete a complicated maths question that requires your full attention, with lots of noise and lights directed at you constantly.  Having to work so hard at 'keeping normal' if one thing is added to the pot, then a meltdown will occur.  This is one reason why a meltdown can happen.   There are also other reasons and things, that will set our son off.  It is not personal.  In his head the world must be such a confusing place with everyone speaking and following a code you can not understand, that is always changing and evolving, desperately trying to find your way through the maze of social conduct.

 

Learning more about my sons disability helps me to empathise with him, and to help him.  We therefore choose low arousal activities or choose not to do certain tasks, as we know it will be too much for him to cope with.  It is not a case of more exposure, the more he will learn. His brain does not work in the same way, whilst he is capable of learning and adapting over time, it is a completely different process and learnt in a different way.  This may seem like he rules the roost but when you know what happens if you don't follow this, you see the full picture and then it makes you go back and define what it is you actually want/need to achieve and you evaluate whether its worth it or can it be done a different way.  Its hard working all of this out, not to cotton wool him but not to destroy any existing progress or friendships also considering the impact of the rest of the family but then again, no one said this parenting lark would be easy...

Our Day

I thought I would post an itinerary of our day, however good, bad or boring....   I had planned the day in my head and thought it'll probably be quite uneventful as I really needed to do the housework and hadn't really planned anything but that, as B was out to an activity in the evening.  However as you read on, things don't always go to plan... I was in two minds whether to post 'our day' but it does show the reality of our lives with a child on the spectrum.

Just thought I'd point out I do try and go to the gym in the morning a couple of times a week before Jon leaves to work - if he's not working away, so that wasn't an added 'look how good i am moment' - I need to exercise in order to keep my stress levels down and hoping it will give me increased energy levels in the long run.

This is an account of our Monday.

6am wake up

6.30am at the gym - 20 Min's cardio, weight training, shower and get ready

7.40am back home - empty dishwasher, make Jon tea, help get boys ready, put last nights ironing away

8am Jon leaves for work

8.30am breakfast for us, bible time with kids and feed the dog

9.15am sort out boys activities, begin housework

10am prepare snack for boys, sort out games continue on with housework.

By housework I mean, washing/drying, tidying up from weekend, polishing, ds toilet room, kitchen and hoover.  It is a light house clean up as in between this I'm sorting out conflicts and timing out computer allowance.  They are playing together but its very loud so am now nestled in the conservatory sorting and cleaning the toys and books to keep a better eye on things.

11.20 play has become too boisterous so TV break

12.00 lunchtime

12.30 Younger boys are playing and B has decided to make micro lite models.  I decided to hoover to finish off downstairs. L is crying and really upset and it doesn't take long to realise he touched one of B's models and B decided to punish him.  Comforted L, he was ok.  B did not understand why his actions were wrong at all, even though i kept my language very simple and that it is unacceptable to hurt others.  He becomes very cross with me and goes on a rampage.  Eventually goes out into the garden (yes it was raining) I put L to nap and i ask the others to tell me straight away if B leaves the garden.

1pm dealing with the episode.  As its pouring with rain I see if i can coax him back in by cleaning his hamster - as this is something he wanted to do - it did not work.  I decided to leave him and see if alone time will calm him down.  Although still keeping an eye on him as our back garden is not totally secure.  He comes into the house, not speaking or acknowledging anyone and takes several things back from the house to the play shed, including his yellow calm down bag.  We leave him be as can see he is calming down.  The other 2 are playing a nice game together so I distract myself by making a bread pudding.

2pm B calls to his younger brothers to come and see the den he has made.  He seems much calmer now and I'm quite pleased that he made his own little den in the garden.  It is still raining but the younger boys go out and play in the rain with their coats on.

2.15pm B comes in to say he wants to say sorry to L now.  Its also time to wake him from his nap.  I bring him down, B says sorry.

2.30pm All are now all inside and we have a snack (dried fruit) A new toy box comes down and the younger boys play.  I'm feeling a bit tired now so sit down and watch the last bit of 'escape to the country' with B who asks several questions through it, as he tried to understand what is happening and what the point is.

3pm kids TV goes on, I decided i'll get more of a sitdown in peace this way

3.30pm craft time.  We all sit round the table and do rub ons and stencils as well as magic painting.  When they are settled into activity I start making dinner.  The younger boys eventually trail off and play.

5pm dinner is served followed by pudding

5.30pm tidy up from dinner and the play room etc

5.50pm daddy comes home, early for a change

5.50pm onwards convincing B to get changed as he has a short break of archery and abseiling to go to - this is a short break of group activities for children with disabilities.  Archery is something he has always wanted to try.

6.20pm finally, he is dressed appropriately and we leave the house

6.35pm arrive at activity.  He is not keen to go, he hides and doesn't really talk to anyone.  He does not like meeting new people and new surroundings.  It takes a while to convince him but the group leader is prepared for him and i do leave (a rather anxious son) at the activity.

7pm come home and have a quick browse on the Internet - hubby is still making sure the younger boys are settling down to bed.

8.10pm leave to pick up B

8.25pm when i arrive, B is in high anxiety state and currently running around the site on shutdown communication mode.  I try and find out what is happening but its a difficult time as everyone has come to pick up their children.  I didn't get the full story until later on as I needed to deal with the current situation - find my son and calm him down.  This is what had happened, B settled and did really well at the archery.  He wasn't keen on abseiling but was encouraged to have a go.  As he went down he got more and more anxious as didn't like it and by the time he hit the floor was in meltdown mode.  The staff and i caught B and walked him back to my car but he was too agitated to get in, we had to restrain him so he didn't run off and for his own safety as it was getting dark.  Its not nice restraining an ASD child but in this instance we had too.  ASD children are very sensitive to touch so being held down is traumatic for them and they will use aggressive tactics to get away.  It does not aid calming down at all.  I had to call Jon to help me as there was no way i could get him home on my own and the site was going to close.  Jon had to find an emergency babysitter - thankfully he did - our neighbour.  When he arrived B broke free, the leaders had re-caught him.  Jon and I quickly made a plan of Jon restrain in back seat, I will drive.  We both grabbed him by the arms put him the car and away we went.  We're quite used to the kicking, head butting and screaming by now.  Just as we're to leave we discover they need to lock down facility and our other car is on site.  They kindly agree to keep it open for us and hope our kind sitter would not mind driving back with us and taking Jons car (we couldn't leave it as Jon was out early tomorrow for work, its a work car so she would be able to drive it insured). 

We leave site at 9.05pm and he is beginning to calm down restrained in back seat by dad

9.20 back in the car with our kind neighbour to collect the other car.  When I got there the leader was able to fill me in on what happened from his perspective and we drove home

9.35 B is calm, we send him to bed etc

9.45 We go through the events together, the lessons learnt and to try and calm ourselves down from it all.  When B is like that we have to be really strong, firm and our communication has to be basic, one voice in neutral tone.  This is to keep his processing time right down, as he is highly anxious all his senses are on high alert and we need to keep everything calm.  As you can imagine, this takes a lot out of you and when its over all your emotions just pop to the surface. 

11pm head up to bed, although its difficult to sleep and could be up in the night looking after the children.

Meltdowns are not just an odd occurrence, its a very real part of our day, some are worse than others.  We had prepared him for this evening events however on this occasion, it was too much.   It is sad as you see the other disabled children appear to cope quite well.  In someways this meltdown wasn't that bad, because I didn't have the younger children with me, it wasn't too public with lots of people watching us and I had help with people who understood. 

B is 8 years old, nearly 9.  He is quite strong for his age and his meltdowns are not like toddler tantrums they are really disturbing.  Its hard to describe but its not a spoilt child having a paddy when things aren't going his way.  After tonight's events and because of the other meltdowns/near misses we've had this summer, we decide its no longer safe for me to go out with just myself and the boys.  It is too risky for their safety and Jon is not always local to help out. We do not have a big support network around us to help us, this alone is very stressful. We also think that although the day has been fairly relaxed due to the upcoming evening activity, the mini meltdown he had earlier in the day affected him more than we realised. 

We are very thankful that we have lots of toys, a garden and that mummy has an interest in art (not quite sure that this is why i went to uni though??)  We can always go out at the weekend and perhaps next summer holidays we will look to hire a carer to help us go out.  It is a really hard balance as you want to expose your child to as many interesting and helpful activities as possible - i do not adopt the - 'i can't do it because I'm disabled' philosophy I'm much more 'we do it despite of my disabilities' - because of this, i guess we put our selves more at risk.  I know that staying in may not really fit in with our life philosophy but I do have be practical and part of being a parent is keeping your child/children safe.  I'm outnumbered, so we'll just have to do and plan things differently....