Raising Two Autistic Children and How It Has Affected My Weight

I have never been super model material and that hasn’t ever bothered me. Prior to having children I was a size 12 and my weight wasn’t anything I ever thought about.

I am not prepared to say what size clothes I wear now because I know I am over weight and now I think about it a lot!

At nine months pregnant with twins I weighted much less than I do now, ten years later. The years have not been kind to me that way sadly.

As a new mother my weight was the last thing on my mind. It went even lower on the list when I told the health visitor I had some concerns about my son’s development. At 20 months I took him to see a paediatrician.

That day the paediatrician first mentioned autism and I went home and ate chocolate…because we all know that HAS to make everything better don’t we?

I had secretly hoped my sons struggles with speech, his delay in reaching milestones, his need for routine, his lack of social skills and his continuing rocking was a ‘phase’ he would grow out of. I was struggling with him outside of the house(and inside too where he would scream for hours on end) so I slowly but surely stopped going to anything with him. No toddler groups to be embarrassed at with my screaming child, no rhyme time at the library to watch other kids his age singing when mine could not say a word, and certainly no church when he would never settle in crèche.

The isolation started to affect my weight.

If you are not going out and meeting people what does it matter what you look like? I coped with the isolation by making poor food and drink choices.

Neither of my children were great sleepers. My daughter would only sleep if nursed from the breast and my son could stay awake all night at 18 months and still have more energy that a Duracell battery!

The lack of sleep started to affect my weight.

When you are tired your whole body is lethargic. You haven’t got the energy to cook and wash up so calling a delivery from a take away felt so much easier. It seemed like one less stress to think about in the chaos of life with young twins who consumed me all day and night. Sleep deprivation also meant that if I did manage a supermarket shop I would always forget essentials out of exhaustion. It took less energy to open a can of fizzy juice to drink than to remember how to even make a cup of tea. I was that tired!

Then as the children started nursery speech and language therapists, early years workers and educational phycologists became involved. The thought of people coming into our lives and our home brought so much stress and anxiety that I would cry into my cup of tea while munching on a chocolate biscuit.

Stress started to affect my weight.

The stress of finding a nursery place able to meet the needs of a non verbal child in nappies at three who wasn’t yet walking. The stress of putting the children in transport when neither of them could say if they were being treated well. The stress of feeling like I was always being judged because my children were not like others would make me want to reach for cake and fizzy juice while the children were at nursery or school.

Outside of nursery or school I had no other child care. My son was still screaming at 6 and beyond and the children’s insistence on rigid routines meant I could never ever be away from them. Going to the bathroom caused my daughter to have a panic attack and my son to scream! Everyday was a repeat of the previous one and outside of school we never left the house. I felt I was letting my children down.

Guilt started to affect my weight.

I felt I must be to blame for my children’s struggles since I was their main carer. I would read about autism being genetic and cry myself to sleep. I would read about early intervention and courses and wonder if I was doing something wrong since my child was 7, then 8, now 9 and still not talking at all. I felt guilty asking the NHS for nappies for my child as if I was somehow stealing from them. I felt guilt I was unable to work and pay taxes. I felt guilt at not noticing the autism in my daughter until she too was diagnosed a week before her 5th birthday!

I coped with that guilt with more take always, hot chocolate and crisps.

Food became my comfort when my world was falling apart.

I lost my self esteem, self worth and pride.

It’s taken me years to accept my children’s autism. I have walked through the isolation, the lack of sleep, the stress and the guilt and though things are not without difficulties, I am in a much better place.

Then one day I realised: if I could accept my children’s autism then it was time to wake up and accept how overweight I really was and do something about it.

Now I am slowly trying to lose weight. It isn’t easy though as my children are just as autistic as they always have been. They still only accept me doing certain things, rely on rigid routines, require a very high level of personal care and still struggle with sleeping a lot. I still don’t have child care and we have an abundance of appointments.

But I am making better choices. I am exercising when I can and not ordering take always like I used to. Change isn’t something my children like and it was so easy to settle into our unhealthy rut and stay there.

But for the sake of my autistic children and for my own health I am now slowly taking control of my weight.

I don’t blame my children for my weight issue nor do I blame autism. It was MY reaction and MY choices combined with the social isolation, lack of sleep, stress and guilt that having autistic children brought that pushed me to seeking support in all the wrong places.

I know it’s not going to be easy but one thing having autistic children has taught me is that even when progress is slow it is so worthwhile.

Five Myths About Having A Non-Verbal Child

I am a parent of a non verbal child. He has always been that way and possibly always will. It’s our ‘normal’, so much so that I often forget when others look at my son or ask him a question that they have no idea he can’t speak. Sometimes I want to tell the world everything about him, because he can’t do so for himself. Other days I want to keep everything about him private and locked into my heart because…well mostly because people, sadly, can be very ignorant.

I know people don’t mean to hurt and they are mostly just curious and well meaning about life with my beautiful son but there really does seem to be so many myths about what it is like living with a non verbal child (or adult). Here are five of the most common ones I have had said to me:

1. “Your house must be so much quieter than mine!”

This one doesn’t offend me but it does make me laugh. Just because a person can not speak does not mean they can’t make noise! My son can scream so loud he frightens the birds away for miles. He makes a lot of noises both with his mouth and with his body. He cries, he laughs and he shouts…it’s just words he can’t make, not noise! He is at least ten times louder than his very verbal sister!

2. ‘You must have no idea what he wants then if he can’t speak?’

This one makes me realise just how much emphasis we seem to put on spoken language when, in fact, it is actually only a small minority of what we as humans use to communicate. I carried my son for nine months, when he was a newborn baby I interpreted his cries when he was hungry, tired or wanted comfort. Nine years later and I still know how to interpret his actions and needs. I can follow his eyes, see his face light up in laughter or he can lead me by the hand to what he wants. He is an incredibly gifted communicator, actually more gifted than many of us who have become complacent in our use of spoken language. He uses google street map to take me to the doctors when ill (you can read more about that here), he uses photographs of places we have been to to request to go again and he uses objects like the TV remote to say he wants to watch TV. He may not have speech but he can still get his message across. It is us who need to learn to listen not him who needs to learn to communicate.

3. ‘Give him time. One day he will come out with full sentences!’

I know people want to be positive and offer hope. I get that. I understand that people don’t understand severe autism, global delay and learning difficulties fully and base their experience mostly on what they have read or heard from the media or friends. People don’t mean to hurt me when they say this, but it does hurt. While my heart would love my son to speak to me suddenly in sentences, with the exception of a miracle, that isn’t going to happen. There are only three recognisable vowel sounds in his ‘vocabulary’ at almost ten. He has ‘o’ (sounded out like awww) and ‘mmmmm’ and ‘ahhhhh’ when eating but these are considered so infantile his expressive language has been assessed at approximately 6 months old. It has remained at this age for three years with no signs of any improvement.

As hard as it is for society to accept; there are people who never develop speech and remain non verbal all their lives. There is offering hope to people and then there is false hope. The latter can destroy and damage so much. My son MAY say some words one day but the reality is he is more likely to remain non verbal. I can accept that and I hope one day others will too.

4 ‘I bet he must be so angry and frustrated all the time.’

I can understand why people would think this. Of course, like any other person, my son has times of frustration and anger. Mostly these, like any other 9 year old, are actually because he can not have his own way rather than directly due to his communication struggles. He IS understood and he IS happy. My son has never known any different. It isn’t like he had speech, became reliant on it like us, then lost it. He has always been non verbal and he has found his own way to communicate on his terms. If people take the time to get to know him they can tune into his needs and wants fairly quickly. Out of everyone in my family he laughs more than any of us so his inability to speak certainly isn’t making him angry or frustrated all the time, anything but!

5 ‘That’s so sad. You must be so heartbroken all the time.’

While it may be annoying having your child whining or nagging for something when you are busy, or asking a million questions all the time, how would you feel if you never heard your child say ‘mum’? Of course I get sad sometimes, I would not be human if I didn’t. There are moments it catches me off guard, like when I see my daughter singing Christmas carols or when someone asks me what my son wants for Christmas and he can’t tell me. On the other hand I have become much more grateful for the times my son climbs on my knee at 9 to show me something on YouTube he likes, or the times he squeezes me hard and still wants me to lift him up even though he is almost my height. When he takes my hand as he climbs out the car or rests his head on mine, he doesn’t need words to say how much he loves me.

Yes a part of my heart feels the pain of never hearing his voice but I am anything but heartbroken all the time. I have a bond with my son which is like nothing else. Silence says everything when we are just sitting together and those moments refresh me whenever I need it.

There are so many more misunderstandings about children like my son. Sometimes I deliberately don’t tell people he can’t talk because they immediately seem to stop talking to him just because he can’t speak to them. That upsets me, but more importantly it upsets my son.

I have had other parents tell their children to avoid my son out of fear that perhaps his non verbal status is somehow contagious. People generally equate non verbal with ‘not with it’ which could not be further from the truth with my son. In fact if he ignores you it says far more about you than him!

Being non verbal is not holding my son back, society is.

It is ok to not know about something you don’t have personal experience of but please be willing to learn.

I am a parent of a non verbal child. I don’t need to be his voice because he is perfectly capable of making his own needs and wants known in his own way: He just doesn’t use speech to do so.

My friend and fellow blogger Chris Bonnello hit the nail on the head with this (to see more of his fantastic memes and blogs see http://www.autisticnotweird.com)

What if Autistic People were Actually in the Majority?

I am out numbered in my house. With three out of four of my family diagnosed with autism I am the only ‘neuro-typical ’ (fancy word for not being autistic). It means I am the only one who would actually want to break the routine to socialise with friends on an evening rather than sit in silence watching you tube after the kids go to bed and I would actually love to have a night without the same regimented routine the kids need to cope. I am not fussed about things having to be in absolute straight lines, I would not watch the same you tube clip a million times and I would happily have a shower at any time of day without it bothering me in any way. Having said that I do what it takes to keep us all happy and I adore the three unique and wonderful autistic people in my life and they continue to teach me so much daily.

However while in my house the ratio is 75% autistic to 25% neuro-typical the fact remains that in the real world the ratio is actually around 1% autistic to 99% neuro-typical. The bubble that is my home is vastly different to the world my husband and children need to function and live in.

This got me thinking: what if it was the other way around? What if 99% of the world were on the autism spectrum and neuro-typical (ha! That very name would need changed to start with since it would not be typical in any way) people were only 1%. How would the world change?

I asked a fantastic bunch of people what they thought the world might look like if it autistics were in the majority. I hope you are ready for this!

Here goes:

Lisa: I think my son would want Wi-Fi everywhere.

Gemma: Clothing would be optional, kinder eggs would be free, KFC would never run out of chicken. If clothing were on everyone would have to be dressed as a princess! Every meal of the day could be crisps and cream crackers or KFC. TVs would play the same film 582 times in a row.

Jo: My son would have clothing free school. Or no school at all, so he would never have to leave the house!

Emma: My daughter would have regulated temperature around 18 degrees at all times, ability to wear her onesie EVERYWHERE. Learning but not school!

Lisa: Endless supply of snacks and self cleaning clothes so he never needed to get changed and music playing everywhere he goes, the louder the better!

Ann: My son David would make every seat in the world a spinning chair. Anthony would get rid of all the speed limits – he loves driving fast!

Helen: I would ban networking, group discussions to agree on what to do next & small talk. In its place I would have guided introductions to people with similar interests, voting on next steps with options pre-assessed and written up, and using cards to pick topics for discussion when meeting new people. I would also remove subtlety from spoken language, and insist that people say what they really think or mean.

Jo: I think Z would love an endless supply of walkers crisps! Me as an autism parent for packaging to never ever change!

Helen: My son would ensure that everyone was trained up in Pokemon. He would also insist that there were only grey socks, baths were not daily and you don’t have to automatically say hi to people just because they are in the room.

Kelly: I have two asd boys, one said he wants people to say what they mean instead of making him guess. The other wants the world made of Lego!

Katherine: My son is 3 year old severe non verbal, but I’m sure he’d love tv’s with YouTube on 24/7, and a massive soft play area.My daughter is 6 years old and high functioning and she’d love Xboxs for playing Minecraft and watching YouTube. Plus swimming pools and places to play with other kids but with little calm down rooms when it gets to overwhelming. Oh and everything be literal and be routine based.

Miriam: My daughter would have everywhere the same temperature so she never had to put a coat on for school. She finds changing clothes so difficult!

Lucy: Me and my diagnosed 6 year old son were just discussing this yesterday…he said mummy for my birthday all I want is a day of silence (he’s very noise sensitive with high anxiety) although he never stops talking, so he said that he would be the only one who could make a noise.

Lisa: My boy would ask for no more schools.

Kat: My son would ask for water play everywhere and flashing lights (if he could talk more)

Sarah: My children would like everyone to stop picking on them because they’re different. I would like people to stop changing things so my routine can be the same.

Emma: My son would say that he would want the world to be none judgmental. Just because he has a illness and is a little different people pick at him.. even adults! So he would definatly say that.

Lisa: My little girl can’t talk but she would like to be surrounded by yellow teletubbies, you tube kids clips and McDonald’s chicken nuggets on demand!

Lesley: Bryan would want lifts instead of stairs and automatic doors installed in houses.

Andy: I would want everyone to just be straight up and honest. Uncertainty is the bane of my life.

Vicky: Meals to be served at set times. As soon as it gets to 12pn/5pm he wants to know where his meal is!

Sarah: Think my son would love to walk around with no shoes and socks on!

Jay: My son is 5 non verbal. I think he wishes everything and I mean everything was edible! And I think he would probably like the world to be a bit calmer, kids to be quieter and everyone to be more understanding.

Katherine: No fluorescent or flashing lights. Every place would have quiet areas to destress/calm down. Shops would not constantly rearrange their layouts. Everything with a visual guide. Also, as I’m a wheelchair user as well as an autistic, everywhere would be fully accessible.

Jessica: My son would have everyone say precisely what they mean, and explain any jokes afterwards to point out the obvious. You would also be expected to spend a large portion of your day playing PlayStation. You also wouldn’t be allowed to sit down whilst playing, you would have to march on tiptoes backward and forwards past the television because it helps you play better. You would also have a safe space in your house where you can go to re-kilter your brain after things have unexpectedly challenged your order of things.

Kirsteen: My son would love to live in a world where it isn’t assumed you have to socialise daily to be normal. And people wouldn’t change their minds, wouldn’t spring surprises and would generally do as he asks. And could there be mini trampolines everywhere please. And no funny smells.

Aria: I am autistic, I would like all animals to be allowed to walk our streets as if they was humans and be able to live in our houses and not just in wild or zoo’s

Sarah: Animals allowed everywhere with the same rights as humans! And school would be optional. With animals allowed to go with you. And a land full of hoovers and traffic lights.

James: All lights have dinner switches, paper towels in all public bathrooms to dry hands with instead of noisy hand dryers. People to not get offended by logic or different beliefs. All motor vehicles to be silent non polluting electric vehicles.

Every home to have a garden full of plants and trees (doesn’t matter it’s a communal garden just should be quiete).People to live BY logic not emotion.All unwritten social rules to be scrapped or taught in school to everyone. Everyone has a mute button to silence them. Everyone to understand what exactly I mean.For all clothes to be banned in summer and indoors (unless needed for safety).To get paid for doing what ever we enjoy doing. Everyone has a human looking robot butler or maid to clean up after them and do the things they forget or to remind you of them.

Charlotte: My son would make spinning a sport, with everything lined in order. There would be ample supply of turkey drummers and potato stars, and mince and dumplings.He would like to befriend all, not excluding anyone.

Emmy: Sam is 3 and non verbal but I’m fairly sure he’d like wheels on everything and “door parks” to go to where he can just open and close all kinds of doors all day long

Naomi: My son would probably like the whole world to be a nudist colony made of trampolines and soft, fluffy blankets.

Anon: I would like for the world to be less loud (both noise and visuals) I would also like to be able to be blunt and say what is in my head without having to filter everything to ensure I am being socially acceptable and meeting all the criteria that means people don’t realise I am autistic. I would like everyone to be honest and open so I don’t have to figure things out and if people aren’t your friends to just say that and not to pretend otherwise.

Leland: A one person at a time shopping mall.

Amanda: All of the lights (even the sun) would be dimmer, and the noises would be drastically turned down. I really want to turn down the volume of traffic! And everyone would be considerate of others.

Owen: People would drive around according to the rules. And people would walk according to the same rules too!

Julie: Everything and everyone would run on time, appointments, traffic, people and perfume and aftershave would be banned

Stephanie: Everyone would only speak the truth – there would be no lies or trickery. In fact it would be a much better world!

Ashley: Florescent lights would be illegal.So would car horns.People would also speak directly, none of that “not saying what you actually mean and expecting everyone else to hear the things you didn’t actually say and then getting mad at them for not knowing what you meant.”

Amanda: There would be no “insinuating” it simply would NOT exist.

Tina: I think it would be much easier for neuro-typical people to adapt to an autistic world than how it is now.

Shayne: My son would make all classes smaller and would have inside playtime instead of the large playground at school.Plus trampolines, swings and foam pits everywhere for whenever they are needed.

Alice: Every “team building” exercise at any orientation or job ever would be focused on nothing more or less than how to communicate with people who are different from you. No stupid “personality quizzes” or “medicine wheel” stuff or anything like that because they’re worse than useless to someone who’s used to camouflaging. Also every job description would have very specific instructions and skill requirements that never overlap with any other job description in the same organization.

Sarah: Non-speaking communication for everyone. Quiet spaces, where one can go for a few minutes of calm and peaceful quiet.

Lee: What would change with the world?Less bright lights. Walls would be sound proofed. People say what they mean.

Julie: Eliza would ban school from starting on any day that wasn’t a Monday after school holidays. Really annoys here when they go back on a random day like a Thursday.

Jonathan: There would be breaks throughout the day for twirling, running around, stemming, and naps.Classrooms would be smaller. Play time would be at least 2-3 hours a day. These would include swings, trampolines, slides, playing with animals, lining things up in a row, and most importantly Legos.

Well what do you think? Could you imagine a world like that? I can see so many positives in there that the world would gain from.

Autistic people may only currently be 1% but they have some significant and wonderful ideas we really need to listen to more!

Learning to be tomato

I am blessed to have a beautiful house. It has bedrooms,  a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.

Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.

When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.

By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.

Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.

Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.

Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.

So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.

So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?

We are learning to be tomatoes!

We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.

Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.

Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!

Sometimes I feel cut up or squashed but however you look at it I am blessed.

I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.

Walking on bubble wrap or walking on egg shells?

Have you ever worked or lived somewhere were the mood of just one person affects everyone else? The boss is having a bad day so the atmosphere in the office is awful? The baby won’t stop crying and so everyone in the family is stressed?

I am a full-time parent carer and more and more I am realising the effect that one of my children can have on my entire family.

My beautiful son has classic autism and neurofibromatosis type 1. He is on the verge of turning seven-year-old and as yet is not speaking, or toilet trained, is dependent on me for all his care and very much lives in his own world.

Some days looking after him is like walking on bubble wrap. We are all cushioned by the fact he lives very much in his own world. People can call him anything but he doesn’t care. We can spend hours watching lifts or listening to the noise of hand dryers in bathrooms oblivious to the fact the world is passing us by. People neither hear us nor see us as we walk on our bubble wrap and only the tiniest of ‘pops’ make us heard in our community. We are isolated, invisible almost at times, but very secure in our own protected world of routine. Provided all is going according to the world of ”Isaac’ the world can be a happy, settled and loving place. He can be the happiest, flappiest, most content child in the world. There is no ‘mummy can I have’ or peer pressure for the latest trends. There is no social pressure to join in the best football team, or streams of birthday parties to go to. I have no costs for computer games as he can’t play them and he is as happy as a pig in mud surrounded simply by plastic food or a few baby books. Some days walking on bubble wrap is the most beautiful, most peaceful and wonderful place to be.

But other days he wakes up at hours only night shift workers ought to see; bedding, child and room covered in your worst nightmare that you smell before you see. Or you hear that high pitch scream for hours on end. The bubble wrap we once walked on once again replaced by a harder, more dangerous and very precarious road known to many as walking on egg shells.

This is the side of autism people don’t feel comfortable talking about. The days when nothing goes right and my child goes from one meltdown right into another. Like the morning this week he freaked out simply because our car was covered in condensation due to the colder weather. Or the fact his breakfast was not exactly what he wanted or expected. Or the taxi came too early, too late, or reversed into the driveway when he wasn’t watching! The days when everything we touch cracks those shells and impacts on everyone in the entire family. There are days, sometimes many on the trot, when we have to look out for the safety of his twin sister as he would bite, attack, throw things, pinch or push her without any prior warning. There are days when I wonder if my back, or hair, or glasses can cope with much more aggression and attacks from a child fast approaching my own height and weight.

It isn’t easy to say but some days we are afraid for our safety and that of our other child. The older he gets the more egg shell days we seem to have. Reversing the car, stopping at traffic lights, road diversions, coming in the house from a different door, not going to lifts or hand dryers, not having mash potato for every meal, you tube layout changing, Google street maps not looking like he expects it too, no internet, presenters coming on the television instead of the programme….and so on. Endless broken egg shells and meltdowns we can not control.

I have never really been a fan of eggs and I detest walking on egg shells. School see the bubble wrap boy mostly, which is good. And sometimes we get to see that boy too.

It is the start of half term here and tomorrow I have no idea if I will wake to walking on bubble wrap or walking on eggs shells and it won’t be me deciding how my own days goes.

Autism: it affects entire families and the way they walk so much.

We have come so far…

January is often a time of reflection for me. A new year; a fresh start. As I approach the second anniversary of my blog at the end of this month I have also been reading back at my own journey. I never knew my own writing would make me so emotional. It has brought back memories and when every day seems the same as the next, it has been nice to see that my children have actually progressed, even if it seems we have been stuck at times. And I have come so far.

When I started this blog I never thought that two years later I would still be writing. But here I am.

And as if to prove a point to me, my son chose this very week to suddenly do something he has never let me do before (well not since he was less than a year old). At six years and two months old he let me read a book to him for the first time since he was a baby.

Sometimes pictures speak louder than words:

This was what my twins looked like when I was last able to ready to them both together:

And this is what they looked like this week when instead of reading to just my daughter I had the privilege of sharing the moment with Isaac too:

We have come so far!

I also came across an old note I wrote on my Facebook account this week. I wrote it back in October 2012, a month before the children had their fourth birthday and three months prior to me starting blogging. It is a poem I wrote for Isaac and I thought it might be good to share, as even though we are still dealing with nappies and we still have no speech, it shows how far I have come and the picture I posted back then shows how far Isaac has come on too.

I’m sorry son

Dear Isaac,

I’m sorry I reversed the car today
When I know it disturbs you and makes you cry
And instead of offering comfort
I got angry and screamed at you “Why?”

When I carried you into the house
heated your milk, sat in ‘your’ seat
But forgot you won’t drink from a bottle
Just because you had shoes on your feet!

I’m sorry you still can’t speak to me
and today that was driving me mad
Your frustrations at trying to communicate
at the moment are just making me sad

Your sister set up a train set
but you destroyed it and pulled it apart
As she cried in my arms at your actions
I cried with her and just broke my heart

I’m sorry I almost force-fed you
when you refused all the options I’d tried
You were staring into space when I dressed you
But I was still so annoyed when you cried

I’m sorry you can’t look at my face
or respond when I’m calling your name
You’d rather pull out DVD’s
over and over again

I’m sorry you’re still wearing nappies
I didn’t expect it aged 4
I’m sorry you wanted to escape
when the gas man came to the door

My son I need to say sorry
Tomorrow we will both start anew
With patience, understanding, forgiveness
And a promise that I will always love you.

With love,
Mummy x

We have come so far!

And it isn’t just me. When your child receives a diagnosis of autism, neurofibromatosis type 1, global developmental delay, or anything else for that matter, the entire family has to learn to cope with it. And we don’t all cope in the same way.

I have struggled at times. My husband has struggled at times. But this week I caught a moment on camera that pictures the journey we have all made so well. Here is my precious baby boy in the arms of his daddy flapping and laughing with delight:

It has been a difficult two years since I began blogging. It has been a challenging six years since the twins were born. But everyday we are making progress. And looking back helps me see that.

My first ever blog was called ‘The journey thus far…’ Now I can look back and say with confidence ‘we have come so far’. And one day I may even be able to sit down with my twins and share some of their own journey with them. I finally have hope that could happen.