I see you.
You are struggling with your 3 year old wondering why she is screaming this time. You are trying to avoid the bites and hits as you don’t want to get yet another bruise and all the while you avoid looking at the disapproving stares of passers by that wonder why on earth a child that age is in a buggy still and why cant you just control her? You hear them whisper how you need to learn to dissapline her or how she’s just a spoilt brat and you want to shout at them that you are doing all that you know how to do.
I feel you.
Endless hours pouring over books and searching internet pages and forums trying to see if your child is ever going to be able to tell you whats wrong and if you are ever going to be able to just go to a shop like most other parents without having to make sure every known meltdown trigger is out of the way and how you wish you even knew what the triggers were most of the time. Will it be the noise, smell, crowds, a word or the fact you have to go a different route to the shop this time?
My heart breaks for you.
As you just don’t know what to do and you have no one that really understands. How can they when you don’t even understand your own child? You don’t know how you are going to get through another day and there won’t even come a small respite for you when other children will sleep as you know sleep just won’t happen again. The overwhelming tiredness is impossible to describe. How you felt when you fell asleep during the speech therapy session because you could actually sit down and you’d only had a few hours sleep in days and the constant wondering if it was possible to sleep whilst walking with one eye shut. The tiredness makes the daily struggle to get her dressed even more of a workout. You don’t know yet but the fabric of many things hurts her skin.
I know you.
And I know you will be just fine.
You love your child so much you will give all you have to get to know everything about her and you will fight for the right school and you won’t listen to people saying the things she won’t be able to do. You will become stronger than you ever thought possible and your child will talk and will be toilet trained and will eat something other than potato waffles! She will grow up to be more than you could ever imagine. It will be hard and the route will be different than many others but you will get to know people along the way that will be such a blessing.
And one day you will just be sitting there as your daughter is nearly an adult and has just finished her weekend job, because she will get a job, and you will think.
We did it.
There are days when we get frustrated in our house because we only have one toilet which is also the same room as our bath is in, and when everyone needs to get ready in the morning it can be a bit chaotic and noisy with everyone shouting for whoever is in there to get out. And of course everyone always needs the loo at the same time!
For a huge number of people however, one toilet in their whole village would be a luxury. Not just one toilet in their house, but between all the houses. Whilst we take for granted being able to go to the toilet whenever we want ( okay, sometimes in our house we have to wait for hours!!) there are so many people who have never used a toilet. They spend so much of their day getting water, using the bush as a restroom and for girls, missing school when they have their period because there are no facilities for them.
Not only do many not have toilets but they also don’t have knowledge of hygiene which results in illness and death. There are such sad stories of girls being attacked as they go to the toilet in the bush.
I, in my ignorance, had never thought that there were people out there suffering in this way. Every place I go I locate the toilet first ( the result of having 4 children!) Until, in my desperation to use the toilet when we were in town, I popped into the nearest church and I happened to see a picture of a toilet on their wall. I looked closer as it seemed like an odd thing to have as decoration and that’s how I learnt about toilet twinning. It costs sixty pounds and that gets you a certificate to hang on your toilet wall of the toilet yours has been “twinned” with. I really wanted to do something and used my savings to twin our toilet but mostly I wanted to make people aware that this was going on in the world and we could do something to help…so I organised a jumble sale with the help of the village donating their goods and time and spending their money! It was a lot of hard work and nights spent at the hall sorting through everything but it was so nice to spend that time with my children and seeing them so passionate about raising money for others. The day was so we supported I was grateful to live in such a community and we raised enough money to buy a single toilet and a school block!!! And maybe mmore importantly were the amount of leaflets people took or read and the knowledge people gained.
Now as we are finding homes for the remains of the goods, we are thinking ahead to our next challenge…the mean bean challenge. If we are fortunate enough to have been born in this part of the world then we should do anything we can to help those that aren’t. It could so easily have been us.
It is nearly the end of another school year and the start of the summer fun. I always look forward to the holidays as I love having my children home with me. and for them, this term at school is all about fun and transition and there is so much excitment and things going on that even the most reluctant of learners seem to enjoy going to school each day. Eating outside, Sports days, leaving plays…the fun just goes on!
But this term, even more so than the one leading up to Christmas, fills me with dread.
And thats because it causes many children with Special Needs so much Anxiety. Gone are the strict timetables that they feel safe with and know so well. Sports day can be cancelled at the last minute due to rain and usual lessons make way for time spent outside or activities weeks. There is panic over whether they will have to eat outside.
And the biggest fear my children have is their new classes. I can sense it coming on year after year when the realisation that everyone is getting excited about being a year older at school and talking about what to get their teachers for leaving presents. There is so much for them to think and worry about. Who will their new teacher be? What Teaching Assistants will they have in the class? Where will they sit? Does the teacher know the things that make life that little bit easier for them? And then they get to spend a day with their new teachers which is very exciting for most but for children like mine, it interupts their usual day.
So, whilst I love the light evenings and special things going on at school (although hard to juggle with work and not wanting to let my children down) I am ready for the questions, tears and fears that the Summer brings!
A few weeks ago I turned 40! The day was lovely, I met up with my friends from Art Club in the morning and got cards, gifts and lovely biscuits and then met up with my Mum, Sister and family and some more friends in the afternoon and again was showered with cards and gifts! I thought how lucky I am! The evening my ex came out who I am still very good friends with and he brought me a selection of thoughtful and funny gifts and my children all made me things and put together a party tea for me. It was a lovely day and I smiled as I went to bed at how I enjoyed it and thought that was the end of it.
I was wrong!!
On the Saturday I thought I was going to the Village social which is held monthly and I walked in quite happily , only to be met with a chorus of Happy birthday and it was full of people I knew! My wonderful family had managed to put together a surprise party for me! I was overwhelmed mainly because of the amount of people that turned up and it really made me realise how lucky I am to live in this village. I may not get along with everyone but these people make life memorable and this is the sign I needed to show we are still living in the right place after months of confusing thoughts about whether it is time for us to leave.
I had the most wonderful night and was quite exhausted by 10 o clock! I smiled as i thought to myself if this were 20 years ago, I wouldn’t have even been going out until about 10 o clock! I have enjoyed my days of partying but I very much like who I am now. I am much more at peace with myself, more content as I know what I want and I know myself more.
And as I looked around the room I made a vow to really count my blessings more than my complaints!
My eldest daughter is nearly 16 years old and she has Autism. The progress in awareness in just that short time has been fantastic, most people know about Autism now. The understanding has made life so much easier and many people are aware of the characteristics that accompany many people with Autism.
I was surprised then of the amount of people that assume all people with Autism are the same in their personalities and actions. And that’s not a moan so please don’t think that, I wouldn’t expect people to know everything especially if Autism isn’t in their life. And there would be many Conditions that I would need someone to explain to me about. But just from my experience, I would like to share how different the individuals are and some of the myths that there are about autism. My children are as different as night and day at times, but also similar in ways too. any of what I say in my blog about Autism is really just personal to us and I know that many of you will know someone with different traits so please don’t think I am ever referring to everyone!
No Eye Contact
Whilst this is true for many people with Autism (and people without too!) it is certainly not true for a lot! My eldest daughter has fabulous eye contact with many people. There are times when she will not make eye contact, if she is worried, embarrassed and most negative feelings but generally if she is happy and is engaged, she has great eye contact! Jessie also makes eye contact. I will admit that she doesn’t make it so often but defiantly with people she knows very well she makes eye contact a lot of the time. Having said that. there are only a very few amount of people that she does recognise or knows well so I think that is why a lot of people tell me that she doesn’t look at them. She does always listen though so I tell people that just because she isn’t looking at you it doesn’t mean that she isn’t listening! On the other hand, there are times when all of my children will be looking at me and clearly thinking of something very different than what I am saying!!
Again this is only the experience I have had but Jessie has more empathy than nearly anyone that I know. One great thing is she doesn’t assume she knows how someone else is feeling, she will likely ask them! Which is fantastic, how often do we just assume someone is feeling a certain way because that is the way we would feel! She sponcers a tiger from WWF and has such a deep love for animals, almost to the point where I wonder if she can actually talk to them!
She also sends some of her money to sponser children so they can go to school and have a meal. It breaks her heart to think of children suffering in any way and sent both her toys to the food bank for children who didn’t have any, and cut her hair off for children who needed wigs.
I do know for my girls though that if someone doesnt tell them they are feeling sad or similar they may not pick it up as they don’t really get unspoken emotions. They couldn’t tell by body language how someone was feeling.
People with Autism don’t feel emotions
A little similar to the empathy one but I have had people say to me that my daughter cannot have Autism as she laughs a lot!!! People with Autism do have emotions, it is just harder for a lot of them to express it in the way that many neurotypical people can.
I wish I had a pound for everytime someone has asked me if my girls have special talents like Dustin Hoffman in Rainman.
It is very rare for a person to actually have the ability to do things like that and probably just as likely for a neurotypical person to have them.
People with Autism are not sociable and don’t want friends.
This is definatly not true for us. Most of the people I know with Autism love their friends and if they don’t have friends would love to but they find it hard to actually communicate this or know how to build friendships. They may struggle with social skills making interaction hard and may say inappropriate things.
The amount of times that I have had someone say that my eldest daughter cannot have Autism because she loves being around people is crazy!!! Her social difficulties come in the form of the fact she is overly social and doesn’t know when to stop talking! She may stand too close, interrupt people, join in conversations that aren’t for her or say inappropriate things that she absolutely doesn’t mean to cause offence with.
Jessie is much more happy with her own company and doesn’t crave the social interaction that Lititia does but she too enjoys a small group of friends. She finds social situations much more difficult though and it is really hard work for her daily to be in them.
autism has a “look”..
“But she doesn’t look Autistic”. People have actually said this. I am intrigued to actually know what someone with Autism is supposed to look like. It is a Neurological condition so i am convinced this does not make someone “look” a certain way. If I find out though I will do an updated blog!!!!!!
One thing we really love about any of the school holidays is that we go and stay with my parents for a few days. We, of course, just love to see them but we love the novelty of having so many things easily available to us. We have so much fun and enjoy every moment of being there.
But we always look forward to coming home. I dont mean we like to leave Mum and Dad as we certainly don’t, but we do yearn for the quietness of our village, the familiarity and close knit feel of it and of course, the beach. We almost breathe a sigh of relief at being back to where we belong.
Something, this time was different. We wanted to stay more days, weeks even! We had so much going on and so much left to do that we weren’t packing happily and waiting to breathe in the familiar air of home. There was always someone to visit or somewhere to go and having Mum and Dad right there was priceless. In September two of my children will be at school there but my youngest does enjoy his primary school which I would then have to get him to myself. My son had a swimming lesson which we could just walk to, we could hop on a bus and go miles and we had lots of opportunities to mix with other Christians. Now, I am just as happy to mix with anyone of any Faith or belief but as new Christians we are hungry to learn! There are lots of Churches and more importantly lots of meetings, events and just things going on to include us. The overwhelming feelings I keep having cant be ignored about moving to a new place.
We have been very happy here and my children love it! The freedom they have to play is so important to them. I know that there are people looking out for them and always a house they could go to if they needed to, if I was late getting their school bus for example. We know everyone and everyone knows us which has so many blessings, and a few negative ones!! I have some lovely friends and things that I am involved in here like Art Club, Committees, Church and writing for the magazine, plus some things that are planned for the next few months but I’m not sure if the excitement of it all has dwindled.
On the other hand, even though there are so many exciting opportunities where my parents live, its much busier and we just love the quiet of village life! There are some days when I think it would be nice to live in a place where we could walk by people who didn’t know us and because there are so many people, we wouldn’t have to try and get along with difficult people and big matters here would seem less important there. I just wonder if we might get lonely at times not having people wonder if we are ok if they dont see us that day. And if we did move and decided we had made a mistake we wouldn’t be able to come back as there are no houses available here.
So, we are at a crossroads and I need a sign to tell me what I am supposed to do as at the end of the day it will be up to me what we do, and of course I would be blamed if it made us unhappy! I guess I need to be patient and see what unfolds and hope I make the right choice!
I was at my very good friends house last week with a group of others and we were talking about ourselves and the season we were eac hin and how we got to this stage in our journey of faith. As i told my story ( not that I really have one especially compared with the others and their divine moments!, mine seems rather boring!) my friend said ” I have definetly seen a change in you since I first met you”
That really meant a lot to me, assuming of course that she meant a good change or that may have been a little awkward after I was saying thank you! It meant a lot as this lady is my Reverend but more importantly she is my good friend whos opinion really matters to me.
Do I feel as if I have changed? I do. I dont mean this to be arrogant at all but I feel I am becoming a better person. my main change is how I feel inside. I feel peace most of the time. Of course I worry still but i feel God has my life worked out for the best so I feel content. Its a nice ffeling to have and I hope everyone finds it, whether they believe in God or another Religion or something entirely different.
Since my last post Ive been enjoying life, of course with the kids but Ill talk about our stuff in another post, but personally Ive been trying new things and meeting new people which ive found daunting after 15 years of having a child with me to break the ice! But its been great and Ive made new friends. It started with mine and Lititias Confirmation which was a really magical day, made better because some lovely people from our Church came to support us. It felt peaceful when I was touched by the Bishop and warm. It was also very special as our 3 reverends that helped us through the Confirmation classes chose to sit with us. It was just sad that our classes were over as we formed a special bond but I got invited to a Bible Study group with my 2 great friends and Ive met some more lovely people who I wouldnt have ever had the chance to meet had it not been for me accepting Jesus into my life. and one lady who is just amazing with all she has been through said she would like to meet for coffee when our classes had finished which made me happy all week! Someone actually wants to spend time with me haha
I got invited to a lovely Candlelit service with some people frim Church and we had a meal after. I felt like I was glowing to be asked to be part of such a wonderful group of people. People that like me for me, its quite hard to get used to!
I feel like for the first time in my life I’m not searching anymore. I have ideas of how I would like my life to go, I feel a calling which I won’t talk about now but I am being tutored by a great man ( that sounds a little weird when I read it back😀) and I’m excited to see what my path will take.
It’s not very often that I go out without all of my children in the evenings but for the last few months for around 3 hours, Lititia and I have been going out! And after the first handful of times the other kiddies were used to it and hardly complained. Of course if there weren’t a few grumbles I would probably call the doctor and feel a little put out that they didn’t mind my absence ☺️
So, what have we been doing with our freedom? Well, we have been going to Confirmation class! Since Jayden started school and I’ve been feeling so lonely, I’ve discovered my journey of Faith. I haven’t any astounding story or moment of when God entered my life but I think with my mind and time not preoccupied and at a time when I needed someone, this was when I was open to start my journey. My family, who aren’t huge believers have been so supportive and have been so encouraging I’ll be forever grateful as its not easy telling people you have accepted God into your life at 39 especially when I’ve been openly against religion and some people have been negative but that’s ok and I respect their opinions.
All my life I have never known what I have wanted to do with it. I love being a Mum but as a person there has been nothing that has really interested or inspired me but now I feel this is my path. I’m not sure in what direction it will go but I feel a sense of peace that I’m on the right road. I have also met many lovely people and made new friendships and discovered things about myself. I am also trying to be a better person in how I act and what I say and wanting to help people and any journey that encourages that must be positive surely!
Sadly, this last Thursday was our last class and I’m really sad about that. I’ve enjoyed learning and especially enjoyed spending time with some wonderful people. So why are we not going anymore?
Tomorrow (actually today!) Lititia and I will be getting Confirmed. Sadly it’s not in our own church but several people from our church are coming to support us which means so much. The people we are going with are so understanding of Lititia finding new places hard that they suggested we go early so she could get used to the church before anyone arrives. What’s wonderful support system we have.
Our vicars have even asked to sit with us so she has familiar faces with her.
I am nervous but very excited to see What this new chapter of my Journey will bring.
September 25 2001, my life changed forever.I met the most amazing, unique girl who Im proud to call my daughter. And it brought a lump to my throat last Sunday when I looked at the young lady she had become, patiently allowing her little brother to “help” her open her birthday cards!
Its been a journey thats for certain! Lititia developed just the same as any other child until she was around 20 months old and then she almost overnight went back to baby stage. I had no experience with children so didnt really think much of it until the health visitor sent us to a paediatrician after Lititias 2 year check up where she screamed and tried to climb up the wall and wouldnt cooperate at all. I knew it was because she didnt understand what was happening and she didnt like the door being closed.
Then a process of evaluations, observations, more professionals than I can remember and keeping diaries of her daily behaviour. They told me it wasnt typical behaviour to want to do everything exactly the same and have everything in the same place, it wasnt “normal” to have no speech or understanding at her age, to scream at noises or smells or lights, and to have the biggest meltdowns imaginable! Thats where I first heard the word Autism and I had absolutly no idea about it other than the film “Rainman”! But we learnt together and life was often challenging and I became very isolated and lost friends but we learnt ways to make our liffe easier…travelling to Exeter listening to one song of the Red Hot Chilli Peppers for example, there and back!!! there is so much I could say about life then but it doesnt really benefit to dwell on negative although ofcourse there were many positives but the point of this post is to fast forward past the numerous years of toilet training, the endless hours trying to search for clothes she may wear, eating waffles for years and only drinking first milk and then blackcurrant, and again Im going on, the point is to celebrate an amazingly Unique 15 year old young lady. she has been at her Special Needs school for 11 years and is doing so well she is even looking towards exams and a catering course! She attends a youth club for special needs children every fortnight where she helps out with making meals and baking. she loves the village we live in and is a big part of the church community where she has made friends. She sets everything up for the services and bakes buns for everyone for afterwards and gives out the hymn books. She is also part of the Flower team and for the first time 3 weeks ago walked to the church herself and help set the flowers up for the Harvest Festival. She has just gotten Baptised, her choice and is only a few days away from being confirmed! Ill put photos of the baptism up in a seperate post.
We face challenges still, daily. We havent slpet a whole night in 15 years! But for anyone with a 2 year old thinking life will never get easier and not knowing how you will get through tomorrow, there is hope. and whilst I still cant go out with friends because my girls wont be left without me, there are a lot more days of smiling then frustration these days. And it will be like that for you soon too.
I have lots of drafts that I have started and then either decided not to post as it just doesnt sound right or ones that arent good enough or ones that I just havent finished and I think in the day sometimes about brilliant things I could write.
Then I realised yesterday that the point of me starting this blog was to capture the moments with my children and whilst I have been thinking of these amazing subjects to write about, I have actually been missing out on the most amazing thing, capturing memories of our lives.
So Im going to blog more often and most of it will probably be pretty boring should anyone ever read it but when I look back after time I will be so glad that I forgot about waiting for inspiration to find me and that I wrote about what really matters to me, my time with my kiddies and our everyday lives.