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Introduction to our family of Autism and A typical.

Family of Five

This is us, a family of five. My husband Mitch, our two boys, Ethan 6, Jensen 4 and the little diva Esme 3. I’m Connie, the home maker, the wife, and the mother.

Our family is quite unique, our boys are autistic, the official statement would be that they are on the spectrum, but if I was to categorise what type of autism they have it would be this, Ethan has all the traits of Asperger’s and Jensen would be classified as Demand Avoidance. Both boys are incredible, they are completely different in every aspect of their personalities. Their sensory needs, coping mechanisms, behaviours, weaknesses and strengths are complete opposites from one and another. At times these differences can truly clash causing some serious meltdowns. The one thing that they do share though is their love for Dinosaurs and their little sister.

Esme, well she’s an A-Typical little girl, a little prima ballerina. She’s at that beautiful age where the cheekiness is still slightly cute but boarding naughty. Where she mimics behaviours and screams the street down if she doesn’t get what she wants. She is smart and funny.

I have to parent all three differently due to their individual needs and me blogging is a way for me share my individual experience as a mother. To use this opportunity to show the world how incredible Autistic children are, how it affects the lives of those around them and the daily struggles we all face living with it. I have parenting wins and fails, and most of the time I feel like I’m completely crap at this whole parenting business. But that will never stop me from trying to be better. To try and be the mother that they deserve.

The Family is one of nature’s masterpieces.

George Santayana

Support pages

The National Autism Society

Mental Health

 

This love holds no choice

Being a parent is the most difficult job on earth.

I’m going share some the difficulties from my perspective as a Mother (because that’s the only perspective I can give a truly honest account of).

I think that having a child is the biggest most rewarding experience, a true blessing and one that I’m eternally thankful for and these challenges I face are no reflection on the joy that I experience being a mother and the unrelenting happiness they bring to my life.

In my opinion you won’t completely comprehend the meaning of true love until you have a little life in your hands that is entirely your responsibility to keep alive and not only keep alive but to cherish and protect every part of that tiny little soul, physically and mentally.

Whilst preparing to have a child people share all sorts of advice and feelings from their parental journey, I even shared mine as a naive childless woman, how I feel silly now about some of my ignorant comments. You don’t know anything till you have your own and even then you won’t know much.

You start to love your child the moment you realise your going to have one, and that builds, grows and multiplies over time without you even noticing.
You start to have dreams, expectations, imaginations, wishes and hopes for that life you desire to bring into the world.

Then one day it a becomes a physical existence, reality, a baby.

Its handed to you with soft pink flesh, smelling like an angel,
with tiny little hands and feet and the most beautiful little face, everything you had dreamed and more, All that building, growing and multiplying of emotions swarm over you like a tidal wave and your powerless to its force.

You have become Mother.

You spend the first few weeks getting to grips with this new shift of priorities, I felt like my like my life no longer belonged to me and that my universe now revolve around this little human and I happily accepted my new position.

I love my husband and everything that our life is but it is a different love you share with your partner. It’s a choice to love, a love we chose to build on and grow and work at every day and having a child strengthened it, made it blossom to a new level, we share something now that bonds us for life aside from our love and desire to be together.

The love you feel for a child is one born without choice.

One that comes with great responsibility.

We have managed up to now to keep our children alive for 6 years, and to be frank I’m bloody proud of that fact. Parenting is hard.

I am not a perfect parent. Far from it.

And I’ll share a secret with you.

THERE ARE NO PERFECT PARENTS!

I don’t care who you are, where your from, how much money you have, how big your house is, what experience you have. When you have your own child none of it matters.

We are all bloody winging it.

Using the tools we have to do the best we can and guess what, sometimes we fall sort.

I feel like we are providing the general basics for our kids, food in their bellies, clean clothes on their backs, roof over their heads. They are clean and healthy.  These are thing I have relitive control over.

It’s the emotional stuff that I feel I struggle with mostly, the other stuff you can see, fix and alter with such ease as wiping a dirty face. Emotional health is a whole different matter. I cannot see what I’m missing there, what I need to attend too and it makes me feel helpless.

I can do my best to make my children feel safe, cuddle when poorly, soothe when hurt, to make them happy in a moment with fun and laugher, to comfort them when they are sad, to explain when they are confused or curious, to teach them right from wrong, and good and bad.

The true difficulty is when you can not help, because you can’t see the struggle, when they can’t express their needs, when they don’t have the words to tell you.

All parents feel the pressures of raising a child.

I feel sometimes my pressures can be a little different because my children are different, no more or less important than anyones elses,  my children’s perspective of the world differs from ordinary people therefore as is their reaction to it and in turn how I handle it.

The boys are opposites on how they express their needs, one will hold in all his emotions because he cannot tell you, find the words, place how he feels, explain or understand his feelings. The other is a force to be reckoned with, his emotions are strong, loud and are physically reactive and are shown in their basic form, he’s either very happy, very angry or very sad, for him its simplistic and bare. Esme is different too, she is shows her feelings on her face, and she tells me with her words and her emotional reactions to things, she’s easy to read and decipher and I can easily get her pin point the basic feelings because she seems able to understand and separate them,  I can fathom her out much easier than I can the boys at this point but I’m sure all this will change when she becomes a lovely teenage girl.

I am the only person that they feel safe enough with to show their true feelings with because they know matter what mummy loves them. Everyday I have to find way to help them to communicate, to teach them ways to tell me their needs. I am usually hit physically or emotionally as they struggle to  handle their own emotional well-being. Every single day I feel like a failure, like I could have done something better, different or tried harder, realistically though I have to remind myself that I’m doing my best for them with the knowledge and tools I have at hand.

Then there’s the guilt. I feel guilty about everything.

The guilt I have about having to spend more time with one child than the others, the guilt about how its one rule for one and another for the other, how I expect different expectations from each child because of their capabilities. I have guilt about everything I can do, don’t do, do do, should do, shouldn’t do. There’s no winner with guilt.

On top of that there’s the worry. I worry about it all!

Are they happy? Are they safe, hurt, poorly? Are they feeling ok? Are they worried, anxious, scared? Have they eaten enough? are they warm, cold? Are people being kind to them? are they being bullied? Are they struggling? What if something happens to them? What if they get lost? And so so much more.

This is constantly niggling though my thoughts all the time. I have anxiety attacks about all my worries while trying to sleep at night, in the darkness of my room with nothing but my thoughts swirling about in my head, my heart starts to pound and race, I feel like a 1000 LB weight is sitting on my chest crushing me, trapped under the pressure of it.

I’d say that 70% of my worries are things I have 0 control over, the actions of others, the world we live in, the cruelty of life. I know I cannot control these. I still worry about them all the same though.

I try to prepare the kids the best I can for the,’ what if’s’, because that’s all we can do. I wish that they will never have the need for it.

One thing that I don’t think any of us mothers are truly prepared for is the loneliness of it.

You can have a supportive partner, my case a very supportive, loving husband and amazing Daddy to our children, you can have a loving family who have your back and will drop everything to be there for you, you can have best friends to bend the ears off.

I am very lucky I have all these people in my life.

BUT I feel alone. I struggle daily, I fight every single day to keep my shit together. I leave the house everyday with the impression that everything is good, because that what I want the world to see. Because that what us Moms do. We are the glue. What other choice do we have. Also I feel that if we are all alone somehow we are all together.

People don’t see the moments when we are washing the pots, crying over the sink because the pressure of it just too much. The days when hide in the bathroom just to steady yourself. When the fight gets too difficult that you feel that you could just walk away.

You can’t walk away though, or give up, or stop fighting, these are not choices what are offered to us because of the Love, the love that we bore. The love that we are powerless too.

A mothers love.

Today’s Pride and Heartbreak

There’s been weeks build up to an event that happened today. We’ve have had tears about it, where I’ve spent over an hour one night comforting my sobbing child because he didn’t know the exact date of this upcoming event. Last night we spent some time deliberating over the perfect outfit for his persona. A mixture of excitement and anxiety slowly bubbling.

Today, Ethan had his class assembly.

Officially parents are to go tomorrow but unfortunately I can’t make it so the school kindly let me come to today where his class was performing to some of their older peers and teachers.

I can honestly say I was in one hand ridiculously proud of my boy, and on the other utterly heartbroken.

When I arrived and Ethan clocked me, I was given the biggest most beautiful smile, sheer happiness that I have come to watch him.
He’s sat in the front row, bang in the centre. I was feet away from him.
I could tell he was nervous as he was chewing his none existent nails, biting his jumper, fidgeting with is fathers borrowed tie. He kept looking up at me waiting for acknowledgment, for my smile of approval and encouragement which was freely given, I was excited for my boy.

Ethan was playing the role of Simon Cowell. So when the X-Factor theme tune came on I was armed with my camera ready to capture this monumental and priceless moment.

How he didn’t disappoint, my heart swelled with pride, that silly daft mom smile that you have when you see your child achieving and accomplishing something pasted over my face, laughing as he delivered the famous comical catch phrase that Cowell says, “I didn’t like it……I loved it”.
He had done it, he had gotten up in front of his peers, a hall full of them and said is lines as he has been practicing over the last four weeks. He said them loud and clear, pausing for the punch line. I am unbelievably proud of my boy, knowing the strength it took him to participate in something that goes against his grain.

He sat back into his front and centre position so the rest of the assembly could continue.

Legs crossed, hand pinned under his legs, head down, occasionally looking up, looking at me, all the faces in front of him.

Two more scenes of the assembly was preformed brilliantly and the hall erupted in applause.

That’s when my heart was broken, my mum instinct had to stifle itself.

My beautiful boy shut down, right there front and centre.
His head dropped right down into the middle of his legs, arms crossed above his head, him sobbing into the little dark circle of his cocooned body. He didn’t anticipated the clapping, the noise, I watched his face shut down right before he wrapped his body up into a tiny ball. All that bubbling that was building had finally bubbled over.

I couldn’t do a thing!

Every single nerve in my body told me to just go grab him from the front of the room but I knew I couldn’t. A mothers instant to protect their child is strong and fierce but I couldn’t just barge past all the children on the stage who have worked hard for weeks too, I couldn’t make a scene.

After another scene was complete his classes lovely support teacher went over to him and took my boy (still sobbing and reeling) over to sit by her side while she attended to her tech role in the assembly. Thankfully there was only minutes left. I watched her do what I couldn’t in that moment, try to comfort him, to reassure him, calm him, she tired and he still cried, before the rest of the children had chance bowed to their audience Ethan was allowed to come to me.

Finally we could have the comfort both mother and child desperately needed.

There we sat with him sobbing into my chest while the other classes vacated the hall, a few teachers tried to come over and comfort him, offer words of prise but he wasn’t interested.

He needed to get his sense’s back to neutral.

By time I had to leave school he was calm, he only had the remnants of a few sobs left. But he cuddled me and went back to class hand in hand with his teacher.

I left the school grounds choking back my own sobs, feeling helpless, heartbroken, saddened and immensely proud.

Now I have to wait till the end of the school day to comfort my little guy again, but I’ve a feeling I need the comfort in equal measures. I know that he’s going to be over sensitized and stimulated after school today, and I know that he’s going to be very emotional but this is what happens when he’s had a tough day, it’s how I know he’s had to try extra hard to fit in and comply with society.

My boy has a strength in him that is immeasurable, his desire to achieve and please is admirable especially when you could see he is battling with his desire to flee, it was almost palpable today. To see him stand and fight his natural baser needs fills my heart, but to watch the moment when they take over breaks it.

Continue reading “Today’s Pride and Heartbreak”

Sweating the small stuff

I’d like to share with you our life according to routines. Without structure there would be mayhem. To be honest there is still a fair share of madness even with routine but having a set plan of the day reduces the amount of anxiety and stress that the boys already experience.

In life us ‘normal’ folk tend not to sweat the small stuff, to us it’s not important, little issues that can be solved at a later date. To an Autistic person these small issues are colossal, huge life altering problems.

Take for example this morning and my two mum fails from yesterday. These are small things but in my house this is a big disruption. Firstly I had forgotten to buy milk, secondly I forgot to charge the kids tablets. No big deal right, I can fetch milk at 8:00am when the shop opens, just means the kids get dressed before they eat, that’s fine, right?

Wrong! That is not the routine. That is not the order that things are done.

Now there’s something you should know about Autistic kids, once they start a routine and they learn that part of the routine they never fail to accomplish that task, ever, it becomes an obsessive compulsion. This can be healthy in some situations and sometimes it can be restrictive. Everyday we play the same dance. It’s rhythm isn’t to be altered or changed at a whim.

Approximately at 6:15 everyone is awake. Not relaxing in bed awake, not playing quietly awake. It’s boisterous and loud and generally aggressively awake. Then there’s teggie time (brushing ones teeth) then because its 7:00am (Ethan has checked with us that’s its 7:00am) they can go down stairs, this routine is followed in this exact way every single day compulsively, including Saturdays and Sundays .

Breakfast is consumed under a large cloud of noise and technology (usually). This is not my idea of a relaxing start to the day but this is the other side of the obsessive compulsion for routine, they must have their tablets. Ethan has to check his dinosaurs on the Jurassic world game and Jensen has to watch Mossasauraus on kidtube. Then we proceed to dress for the day.  This is their routine and god help any man who dare prevent it.

Well today I was that man.

My simple forgetfulness caused disruption.

Now everything was out of sync because of me and my simple failings the night before. I had to go on to damage control, moments like these I become a little anxious, the last thing I want to do is send the children to school feeling overwhelmed and stressed before the day has even begun.

Ethan is upset, I’ve asked him to dress and told him why we need dress before breakfast but he refuses, I’m told that that’s wrong, we don’t get dressed first. I take my time to explain to him the situation in detail, the order of what’s going to happen on this morning,  tell him the step by step of what needs to be done and he relaxes a little and feels he has a sense of control back. His not happy about it and some convincing is needed but he does get dressed with a few prompts and reminders. The tablet issue is less forgiven. I know that this will be a focus in his thoughts today at school because he wont have finished his dinosaur missions. He’ll be distracted and its my fault, something that I could have prevented.

Jensen has to be handled differently. He’s not happy about the tablet fiasco, and his points on the matter are heard, loudly crossly and physically as he pushes me to voice his grievance. I apologise, I forgot son sorry, I’ll charge it now so its ready for after school (commence the tears and screaming about going to school). Now if I had said to Jensen get dressed, he would have done everything in his power not to, and this isn’t because of a routine change so much but because of the demand placed on him, he can’t  handle it. To you and I its a small request, put your clothes on, simples, for Jensen its like I’ve asked him to climb Mount Everest. So I don’t ask, I dress him. I don’t ask, I just pull him to me and attend to putting his clothes on, and its no simple task dressing a 4 year old who just cannot stand still. The task is complete with almost no fuss, almost, he’s still pissed about going to school.

Esme, well she’s easy aside from the, haha, it’s so funny to keep running away while you try to dress me ‘game’ she just loves to play every morning. Its cute and irritating all at once. But she doesn’t notice any change in routine, she just goes with the flow.

Now its 8:00am, the husband fetches milk and breakfast is served, they get the tablets from the chargers in a desperate attempt to do their usual routine, we don’t have time for the endless prompts of, ‘eat your breakfast’, but it happens anyways. I have gotten the shoes all paired and lined up, school bags and packed lunches by the door. Now its 8:30 and we always leave at 8:30 on the dot.

We have never been late for school, Ethan would have a melt down if he was late for school and his class had gone in without him, being late is not an option for us. So commence the panic, there’s anger about the technology being removed from their grasp, but its got to happen, I put all three kids shoes on and throw the bags over their heads. We are ready!uu

Out the door at 8:35. Outside Jensen decides he NEED’S his coat (even though its going to be highs of 20 today), he will not cooperate until his needs are met, back in the house for coats (Ethan has to have his coat now too because Jensen has his, part of his mimicking behaviours).

By 9:00 am after many struggles, battles,  persuasions we arrive at school (and me taking a few punches from Jensen along the way) . Jensen is literally pushed into school like every morning, and Ethan joins his line, on time.

This morning was rushed, stressful, unorganised, and very almost late. I put pressure on the kids, and in written word it doesn’t seem so bad but in person I see lots of anxiety cues from the kids that only an autism parent would probably notice.

Once home I find that my brain is fried, I feel a little weary and deflated. I know that this mornings dramas could have been avoided if I had been on top of my game last night but as I have to keep reminding my self, I’m only human.

So as you can see in my house I literally sweat the small stuff.