How my sons inability to speak is tearing our relationship apart.

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This is something I have never written about before or admitted to anyone, but I have always struggled with my relationship with my son compared to his sister. I don’t love him any less nor do I favour one above the other but there is something that prevents me being as close to him as I am to his sister: his inability to speak.
The older he gets the more it is literally tearing us apart and that breaks my heart.

We are both trying, we are determined to try and overcome this but no matter what we do it is always there lurking like a dark shadow.

We play together, we ‘read’ together (well I read to him!), we share games and we eat together but it is incredibly hard to reach into him when he is non verbal. That breaks my heart. Having no spoken language at all really affects my son so much.

Having no language at all at almost 8 years old has forced him to be more independent.
He can’t ask for help or even ask for something to eat. So he uses his physical skills to open the fridge and help himself or open the front door and take himself out. The other night he took himself to bed because he was unwell. He has in the past brought me a cup or a bottle of juice and I have found him sitting at the table with an empty plate in front of him too. I would love to be able to hear him simply say ‘mummy, I have a sore head.’ Or ‘can I have something to drink please.’. He won’t always have access to the bottle of juice or cup to let others know what he wants.

Having no language is making him frustrated and angry.
imageI know if, like his sister, he could talk about his day at school and let us know what has upset him we could help him calm down and share his day with us. When he looks at a box of toys and points it is incredibly upsetting for him when we continually have to guess what it is he wants and we frequently get it wrong. He gets upset at certain programmes on the television but has no way of telling me why so he gets angry instead. He finds open doors highly distressing but has no means to tell me why so instead he becomes frustrated and violent. Speech would help us resolve all these issues. Some will be quick to suggest sign language or picture communication but these are so limited and his inability to make the right sign or find a relevant picture just make him even more angry and frustrated.

Having no language means he is at the mercy of others to communicate on his behalf.
Could you imagine having a wonderful holiday, printing out all your photographs and yet someone who wasn’t even there with you decides to tell everyone about YOUR holiday without allowing you to say a word? I am certain you would find that irritating and annoying and you would become very cross. This is what is happening every single day when I send my non verbal son to school. Adults dictate what information I receive on my sons behalf and tell me (if I am lucky enough!) about the experiences he has had. It’s not what I want. It’s not what my son wants either! He wants to be able to tell me about his day, his way! When I pick my daughter up from school she tells me about her favourite pencil breaking, the games she played at playtime and the funny shaped banana a child had in their packed lunch box! This is life from her perspective and something I can never ever get from her brother. A huge chunk of his day is a mystery to me and he has no language to enable that gap to be bridged. Have you any idea how difficult and heartbreaking that is for us both? It rips our relationship apart.

Having no language is life limiting for him.
He will never be able to read to me, or to anyone else. He won’t ever be able to use his voice to tell a joke or share a story. He won’t be able to sing or even give me cheek. As he gets older he will not be able to use his voice to ask a girl out or even say ‘I do’ on his wedding day. Asking the price of an item in a shop, asking directions, even telling the bus driver where he wants to go are all going to be difficult if not impossible. He is likely to need someone with him to support him throughout his life. Using a telephone is never going to be easy and connecting with other people will always be much more complicated.

We have tried alternative methods of communication. We spent years trying makaton but he can’t manage the signs himself and is struggling with picture communication too.

I know if he could speak so many things would be different. I know if he could speak we would be so much closer. How do I know this? Because he has a twin sister and my bond with her is strengthened every single day through language. She tells me about her day at school, her worries, her achievements. We play together and I join in her games because language enables us to play together. She reads to me and with me. She can tell me what she wants and I can listen. She shares her emotions, her ideas; her life with me through talking.

The more she talks to me the more we bond. The less my son is able to say the communicate the more our relationship is strained.

I am working on my relationship with my son every day. We have a very special bond and a deep love but there remains an invisible problem between us that is tearing us apart: the fact he is non verbal.

If I could change anything it would be that he would one day be able to speak to me. If only love could make him talk…

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The nine household items responsible for meltdowns in my autistic children.

Don’t they look so sweet and happy?

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That’s because they usually are!

Yet all that can change in an instant when they see or hear certain household items. There are certain things pretty much every home has that cause both of these little angels to go into complete sensory meltdown in the blink of an eye. They become terrified, traumatised and tearful and we often end up exhausted.

So what could be the cause of such fear you may ask?

Here are the top household items that cause meltdowns in my children with autism (in no particular order).

1. The vacuum cleaner.

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Just the very appearance of this cleaner causes both children to run for the hills with their ears covered! It’s noisy, smelly, changes the carpets and moves their toys. Wisdom has taught me to keep this machine firmly in the cupboard until the kids are out of the way.

2. The hairdryer.

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I have tried to get them to hold it, turn it on and off and even use it on me but no, this item is more like a raoring lion than a plastic air blower to them. Every single time it is needed to be used they fight it even if it is only for my hair. I doubt either of them has a future in hairdressing!

3. Nail clippers.

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Oh boy you have never seen a meltdown until you see my children react to these little things! They run, hide and scream so loud I am surprised my neighbours have never called the police to us. They would rather have nails jagging into them or so long their shoes no longer fit than have me take five minutes to gently use nail clippers. Even the highest trained manicurist would struggle to contain the fear my kids have for nail trimming.

4. The shower.

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We are blessed to have a bath (in which my kids would happily spend all night in) but sometimes for speed it would be lovely to have them step into the shower quickly before school or after garden play. I may as well suggest being eaten alive by a crocodile! Showers in swimming pools, caravans and hotels are avoided like the plague!

5. A hair brush.

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I am a gentle parent, that much I promise you! I brush their hair slowly and calmly and never pull or tug but we still have a huge daily battle to get hair brushed or combed. Gel, spray or mouse is never well recieved so I settle for a basic brush most days. I pray they never ever get the dreaded head lice!

6. The hair trimmer.

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I dread the time we have to use these. We have tried barbers and hairdressers but after badly cut ears, and even being banned from one local barbers we decided to try doing it ourselves. It gets so bad I find myself using a number one so that we can go a lot longer before it is required again. It takes days for my son to recover from a hair cut of any sort.

7. Toothpaste and toothbrush.

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I don’t think there is a brand of toothpaste we haven’t tried in a vain attempt to get my children to brush their teeth. They are too strong, too minty, too lumpy or too colourful! It never ceases to amaze me that my child chews everything he can get his hands on yet goes crazy at the sight of a toothbrush…something that is actually designed to go in his mouth! We have tried apps on the iPad, songs, timers, character toothpaste and brushes and visual timetables but the sensory overload of brushing seems to cause us to hit a brick wall every night. Dentistry is another career choice I reckon I can score off the list for them both!

8. The food mixer.

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Thankfully this gadget isn’t used as often as the others but every time it is used we have meltdown city. It is loud, it vibrates and it makes it impossible for them to stay in the same room. I am eternally grateful it is only ever used for a few minutes although the calming down of the children takes so much longer!

9. Socks.

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Yes you read that right! Socks! They don’t make noise, or make them wet or even go in their mouths yet socks drive my children nuts! We have tried the seemless variety and every colour under the sun but it seems anything that covers their feet is unbearable and ought to be binned. We have had socks thrown out of car windows, left in school, flushed down the toilet and hidden at the bottom of the toy box. They are the last item of clothing put on before school and the first items to come off. Cold feet (with uncut nails!) is the way forward apparently!

As long as my children have no shower, long nails with no socks on, wet (uncut) hair that hasn’t been brushed and unclean teeth and my carpets are not vacuumed all is happy in my household!

They don’t seem to see the problems…unfortunately I do!

If you happen to walk past my house and hears screaming you can take a bet on which household item of these I tried using.

While the kids are at school I am off to have a shower, brush my teeth, dry my hair and trim my nails…and put socks on. It will be nice to do them all meltdowns free for once!

 

 

 

Three things that happen when your autistic child is different at home and at school

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I am going through a very difficult time with my son. This morning he was carried to his taxi by my husband and myself kicking and screaming. He was stressed, his sister terrified and I was anxious and worried.
I haven’t called the school and asked if he is ok because I know what they will say.
He is not like that in school

Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. This creates some problems for school, home and professionals. The great divide between home and school is a huge challenge and I am not alone in struggling with this.

When my autistic child is different in school it makes parents feel they are to blame.

When the common denominator for the challenging behaviour and meltdowns is home it is all too easy for professionals and schools to jump to the conclusion that bad parenting is to blame. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough! Just because a child has the ability to ‘hold it together’ in a very controlled environment all day and releases the lid on their frustrations, stressed and anxieties at home does not mean home life is awful. In fact the opposite is true! If a child did not feel secure, loved and safe they would continue to ‘hold it together’ at home for fear of releasing their true feelings.
Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when their ‘perfect’ child is presenting totally different outside the school gates.

When my autistic child is different in school it makes accessing support very challenging.

So many parents know their child needs support from CAMHS or social work or speech and language but continually get denied these services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education where if referrals are put in from schools these are readily accepted yet a parent refers to the same service and the referral is often refused. There is still a huge assumption in the system that if a child truly had problems these would manifest in all settings the same. So parents get left to pick up the pieces of broken children by themselves with little support and hundreds of vulnerable children fall through the system because they are ‘good’ in school.
Perhaps if schools spoke to children or were more aware of stresses within the classroom environment for children with autism like noise, lights and the stress of conforming all day they may be more willing to support referrals for children who seem like Jekyll and Hyde.

When my autistic child is different in school it appears I am lying.

I have been at the meeting when all eyes are on me and I know they think I am lying, or at best exaggerating. I should never have to do it but I have resorted to videos and photographs of my child at times to prove that what I say actually happened. Would staff at school have to do this if the opposite was true and he was angelic at home but violent in school? Everyone at the meeting would be jumping in to support the teacher or school support staff if they were scratched or bitten or pushed by my son but as his mother it is seen as outrageous that I accept this behaviour at home. When I mention strategies we have put in place to help support my child at home and how these are not working some days they once again assume I am lying. It makes parents feel so alone, so belittled and unworthy. We already feel like a failure and those feeling are just made worse when schools give more and more examples of wonderful behaviour at school in answer to every incident at home that is mentioned. He punched his sister at home but shared his pencils with another child in school the same afternoon! He had a complete meltdown over homework yet got full marks in his spelling test the same day! It can be the same child and the sooner professionals and schools understand this the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them up?

I know what it is like to see my child happy, flappy and a delight to be with. I also know how hard it is for him and myself to see him so distressed he can not control what he is doing. Like thousands of other autism parents I experience the great divide, the Jekyll and Hyde of autism, on a daily basis.

Put me into different environments like an interview, a prison, a party or a holiday and you will see me change to suit my environment. My child with autism is no different.

I need people to see this and understand.

The ten types of selfies I get with my son with autism

This is a tale of the very real issue of trying to get a selfie photograph of me and my son. Isaac, aged 7, has non verbal severe autism. Here are my top ten attempts at having out photos taken together. I won’t be offended if you laugh…some of you may even relate!

1. The ‘climb all over mum’ selfie. 

2. The ‘iPad is of more importance’ selfie
3. The ‘screaming’ selfie. 
4. The ‘he did it himself’ selfie.


5. The ‘EEG’ selfie.


6. The ‘spaced out’ selfie.


7. The ‘do you want a piece of plastic toast mum?’selfie.


8. The ‘I’ve just pulled mummy’s glasses off and find it funny’ selfie.


9. The ‘surprise mum from behind’ selfie


10. And last but not least the standard ‘look at the camera and smile’ selfie.


We totally nailed that one Isaac!

I haven’t included the ‘won’t stop flapping so we only get blurry pics’ selfie or the ‘I like to be naked for pics’ selfie or the 3,413 blank screen pics he took before he worked out to press the forward camera button when the phone is on your knee either!

After 2458 outtakes I shall finish with this ‘I just got new glasses so mum wanted a selfie’ one which actually is pretty ok considering.

*Please note no mothers or sons were harmed in the making of this blog.

Ten signs I dread as an autism parent

I have two children with autism. Some days are wonderful, calm and peaceful but some days my children become so distressed over something and there is very little I can do to calm them down.

This week for example I took my son to the local store with me only to discover his favourite lift was ‘out of order’. It took hours for him to get over that sadly. Then today I had to take him for an appointment at hospital but on our way back to school one of the roads was closed and I had to take a diversion. This change caused so much upset it took three members of staff to support him back into school.

thise are just two examples of how a sign can cause so much upset to my children, even though one of them still can’t read. I try and avoid the following ones as much as possible.

1.
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After today I will be checking websites before trips as this simple red road sign caused so much upset and confusion. Rigid thinking means my son expects to go the same way every time and this is just not allowed!

2.

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Sticking with road signs this one particularly makes my daughter cry! Her sound sensitivity means that even with ear defenders on the noise of people digging up a road is more than she can bear.

3.

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My final road related one is this.

Stopping or waiting is not something either of my children find easy at all. This little light has caused so much screaming, yelling and biting in my family. They may have to learn but the less of these I have in any journey the better off we all are!

4.

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So we did the social story, the now and next board and then navigated the journey only to get there are find this! This one has to be one of the worst signs any parent sees when they have excited, prepared children. Sometimes, just sometimes, Google is wrong and opening hours a NOT as advertised. The fall out from this one is BAD!

5.

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They want one thing for their birthday, just one thing. And all you see is this! Or in my daughter’s case they have a very limitted diet and only eat a certain brand of a certain spread. But the shop shelf has this. This one sends me into as much of a meltdown as my kids!

6.

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Sticking with the food theme. So you stocked up on the few things they will eat but finally you realise you need to restock…and you see this small but terrifying label on the top corner! Run for your life…this is as major as a packet changing in my house! Don’t kid yourself…they will notice!

7.

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Please be quiet? Are you serious? Have you tried to keep any child quiet anywhere, let alone a non verbal child with autism. My children make their presence known and find it pretty much impossible to keep either of them silent.

8.

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This sign is so hard to explain. Unfortunately my children live in the age of instant wifi and can not yet work out why anywhere would not have free instant access to the Internet. Neither of them can understand why apps don’t work in certain places or why they can’t keep watching you tube in the car. We have had lots of outrage over this one!

9.

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Sticking with technology this little red face has in turn made my little darling’s faces turn a similar shade. I have nightmares about this little icon! For those who don’t know this one means you tube has stopped working…in other words the world has ended in my house!

10.

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And finally, you may wish to look away from this one as the sight of it has brought many an autism parent to tears. The meltdowns this has caused can not be counted. Apparently technology should have endless power and energy…rather like they expect me to as an autism parent too.

Looking at these signs has driven my power to less than ten percent too, so I will leave you with my favourite sign ever as an autism parent:

Race you there!

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