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)

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.

 

 

Preparing for Easter

2 weeks time is the big day - Easter! So todays blog post is about how we prepare for Easter as a family, in our house.  For some Easter maybe seen as a chance to catch up with family/friends, indulge in chocolate, a break or get a DIY project done over the long weekend. For us, it is the pinnacle point of our faith!  We believe that Jesus is the son of God, completely perfect and spotless, who died as a sacrifice for our sins, who then conquered death and rose again.  Because we believe Jesus is, who He says He is, we remember, reflect and celebrate him.

 

There are many different ways to celebrate Easter, starting from pancake day, lent or the Holy week.  We want to get the kids excited about Easter and for them to realise it is not just about chocolate (as commercialism would like us to believe) but an important part of our identity.  Whilst I would love to do the whole of lent, during this current season, it has just been too busy.  I am sure this will change over the years but for now this is where we are at.  Our children are aged 11, 9, 7 and 4.  We have to pitch it to keep their attention and for everyone to feel included.  We did do pancake day and we discussed lent as a family.  We have been reading through the book of John together as a family for our morning devotions.  I do believe we are free to choose to do lent or not, we are not bound by legalism.  We start focusing on Easter, 2 weeks before the big event, as we want them to be excited (not bored with it all) and to give them enough time to reflect and think about it all. 

 

We do an egg countdown (a bit like our advent calendars).  I used an old egg box and some plastic eggs from Poundland.  In each egg is scripture, which will tell the account of Jesus leading to his resurrection and a mini chocolate egg for each child.   This is our morning bible time.  The children will take turns opening the egg, finding the passage in the bible and reading it aloud.  Last year we made a tree out of sticks/branches and I cut out egg shapes.  During this time, the younger ones could colour in the egg shapes and the older ones would draw a picture/symbol of what we were discussing.  We also made an Easter banner so if it was not their turn to colour an egg, they could colour in a character (I do have 4 boys and keeping still to listen, does not always come naturally, so a planned distraction helps).  After we had read and discussed the passage, we would then pray and hang the egg on the tree.  This is what we did last year as Easter fell at the end of the school holidays, so we made the most of the 2 weeks beforehand. 

 

 

 

This year, Easter is before they have the break, so as we do not have oodles of time before the school run, we will not do the tree and the crafts.  After breakfast, we will open the egg, read the scripture, discuss, pray and eat the chocolate.  It will probably take between 5-10mins depending on questions etc.  We choose to read the bible verses rather than the stories as this is more appealing to our older children and as we then discuss what we have read, it helps the youngest to understand.  At the weekends, we have more time and we will do a family Easter craft together.  I enjoy  purposefully making memories with the children.  Sometimes it goes well, other times it does not - either way, it doesn't matter as the goal is to make memories of spending time together as a family. 

 

Today we kicked off the celebrations by making an Easter garden in the pot by our front door.  I have also bought some Easter themed craft projects which we can do at the weekends together.  Todays project is to sew a Jesus, a cross and a palm leaf. So that is how we start to prepare in the lead up to Easter...

 

Our Easter countdown readings:

 

Genesis 3:1-19

Genesis 22:1-14

Exodus 12:21-30

Luke 2

Luke 3

John 2: 1-11

John 11

Matthew 21:1-11

John 2:12-25

John 12:1-11

Matthew 26

Matthew 27

Nothing (We leave the egg empty, so that the boys can have empathy about what it would have been like not to have Jesus)

Matthew 28

 

We read the children's NIV translation.

 

Valentines Day!

Almost Valentines Day and the shops are filled with hearts, cards with overpriced chocolates and flowers.  Restaurants are smiling as they get to charge extra and can expect increased bookings as couples head out for a night of romance. Pretty much everything red, pink or has a heart on it can expect an increase of profit.  This one day of the year, males feel obliged to show their love in romancing their other halves by purchasing the above gifts, all wonderfully presented to you by the power of consumerism.  This year though, we have the release of '50 shades of Grey' in the cinema, so instead of being just about romance, it can now be all about sex too - who's having the best sex and what can be purchased in order to help facilitate it.  This year there seems to be an increase in the amount of sex cards for Valentines.  I was shocked when I went into card factory and saw that display.  I will not be purchasing a 'you make me so wet' card for my husband - its not that I don't want to have sex with my husband, I just don't want that conversation with my children or have that displayed on the side in my house for any guests/family that may visit!  Apparently even B&Q/DIY stores are prepping their staff in the sales of cable ties and duct tape as the new romantic gift and are looking forward to welcoming in 'the 50 shades inspired' customers.

 

Whilst I may come across as cynical or you maybe thinking 'oh her husband doesn't get her a card' I actually like Valentines day.  I am happy to have any excuse to show my husband and children that I love them! Last year, I gave each of my boys a little poem and chocolates and my husband a card and gift too.  I want our children to see that we love each other and them too.  I am equally delighted when I receive flowers, chocolates, well any gifts of affection.  I appreciate the thought and the time that goes into it.  I include my children in Valentines day as to me it is about love.  If Valentines day is about sex/romance for you, then I can understand that it may seem weird to include your children.  This is the perception I used to have but as I get older, I learn more about love.  I want them to feel loved and know how treasured they are in a non sexual way - that they do not need a girlfriend in order to experience love or be loved.  I want them to see their dad love me and vice versa, in a romantic, treasured way throughout our marriage.  I would hate for them to think of love as just sex and that romance is just for new relationships. Who knows, in a few years time maybe one of them will blog about their mum being weird and getting them valentines stuff!

 

It is important to love one another everyday, however I don't always show it in the big gestures.  I get caught up in the everyday and I show my love for them in the little things (they may not always see it) but this is the love that counts - the building blocks.  I am there for them, I 'do' for them, I am there for the happy, sad, telling off, joyful, the mundane times.  I don't spontaneously buy/do love gifts for them on a day to day basis (gifts are not my love language).  Therefore, I find it easier to be purposeful (ie bigger gestures) on set days ie Valentines or anniversaries.  So whilst I have heard and no doubt will see status about how consumerist/empty it all is, that we shouldn't be told to be romantic/love as then it is meaningless, actually sometimes I need this and I am not ashamed to admit it.  It does not mean I don't love them or that I will be buying all the stuff but it does mean I will be taking some time out to think about the ones I love, what their love language is and how I can show them I love them this weekend. 

This year, I am planning on keeping it simple, as have not been too well recently.  For the boys, I will give them each a piece of scripture, just for them with an affirming note along with some chocolate (if you have met my boys, you know that they always appreciate food) and for my husband, a card, put the kids to bed early, a relaxed dinner for us with a nice bottle of wine...

Happy Valentines!! xxx

Now the children are all at school...

So all 4 children have started school, I should have loads of time now to get on and pursue the things I have wanted to do... well this is what I thought, but it turns out, that's not the case.

I thought when all the boys started school I would have some time to get on with my projects, write regular blog posts, do running/look after myself, start hobbies, be up to date with all the house work, bible studies, reading, have time for myself and be able to give more to others.  In reality this didn't work out as I thought - infact that is quite a list when I jot it all down.  Seasoned mothers would tell me to enjoy this time, take time for yourself and read a book or two - I agreed and thought that this is what I would do.  For the past 11 years I have been in full force of growing, caring, raising and prioritising babies/small children, learning about their disabilities, parenting on a different journey, as well as, being their advocate.  I wanted to use the first term of adjusting to this new season. I didn't want to take on any new commitments but have time to consider before I leapt.  However, life has been quite busy and I have just been so swept up in it all, that this time to consider just hasn't happened. 

It is like I forgot all about the fact that I am a mother to 4 children - 3 of whom have special/additional needs and at times very challenging needs. I forgot how much time the school run/picks up took (4 in 3 different places), how much time I spend preparing and attending appointments for their needs, looking after the home on a day to day basis (let alone think about a full spring clean) and how much energy I needed at the end of the day for when they all came home.  I was under an illusion that I would have all this free time with L at school. That suddenly this new chapter meant that all the other things would disappear and I would be trying to work out what to do for 6 hours a day!  Don't get me wrong, it is much easier to do all these things without also entertaining or organising a sitter for a little one.  My perception when they were all at school, is that life would be easier and in some ways it is. However, I would describe it like a conveyer belt - as soon as one thing is mastered it falls off the end and something new emerges... For example, when they are younger, they may move from walking to running, then its time to tackle toilet training (in our house it appears obedience seems to stick to the belt so we often have to re-tackle this issue...) It is mainly physical when they are younger and as they get older it becomes more emotional ,which is draining in a completely different way. As my children have gotten older they are more independent but due to disabilities/needs, they are behind their peers in a few areas and need extra help in doing the ordinary, that others don't see - so we still have a fair amount of physical alongside the emotional.

I know that there are people who have just as many children, with perhaps just as many needs - who perhaps also work but I think it comes down to your capacity of what you can handle and the courage to accept it.  I need to have flexibility to go to and prepare for appointments and meetings.  I need flexibility to manage my time so if we are having draining episodes I have some down time to recover - being a carer can be tough.  I need energy to manage the school pick ups (which are not always very straightforward), energy for after school to be able to help them organise themselves for tomorrow, do reading/homework, afterschool clubs (which they need to help them develop/build up muscles), follow sensory diets/programs, make dinner and manage a conversation or 2 for when my husband comes home! I also need my house to be tidy, otherwise I can't cope. I (reluctantly) need to do exercise each week or my mental health suffers.  I think because my list of 'have to do's' can be quite large, I don't have time to do all that I had hoped this season would bring. I lost my way in appreciating the fact I now have the time to do the 'have to do's' without rushing through or stressing.
 

Basically, I just put too much pressure on myself to achieve everything and be a super woman/wife/mother in this new season without even realising it.  I like and long for everything to be perfect and in my life - it hasn't been - Life did not go to 'My Plan'. I think on some levels, I thought now was finally that time to achieve it all.  In the back of my mind I think I stored up phrases such as 'when they are all at school I will be able to do ---' and expected to complete all of them in that first term.  Whilst I was able to do some of the things I wanted to do, I didn't enjoy it as I was thinking about everything else that I also wanted to do and hadn't achieved.  As I have been raising little ones for the past 11 years, I built up quite a list!  This perfection trap is something I so easily fall into time again but life isn't perfect, its actually quite messy.  I hadn't even realised that is where I was, until the New Year and was feeling fed up.  I knew I had some important meetings coming up but I needed to release the pressure I had put on myself - so time to restock, learn the lessons and move forward.  The best way to do this, is time in prayer and reading Gods word.  I am a 'planner' and enjoy achieving things and checking off lists but I think this season I need to just be still and let God guide me through, enjoy the moments of calm and find my new rhythm.

So if you are wondering what life is like for me with all 4 at school - its pretty much the same, I just don't have my little companion with me (whom I miss) and therefore I can spend a bit more time doing what I was doing before, to help our family life run a little smoother...