Why I will no longer attend anything at my autistic son’s school

I don’t want to be one of those parents that never turns up for anything at their child’s school, but next year I can assure you that I will be that very parent. I won’t be at any parent engagement events, or school shows and I will be avoiding assemblies like the plague! I won’t even be at parents night and my child won’t even see me at the annual achievement assembly either.

I am not a bad parent though, far from it.

This is NOT what I want but I have come to the conclusion it really is for the best.

In fact making this decision has broken my heart.

Yet my New Years resolution to not attend anything at my son’s school is one New Years resolution I fully intend to keep.

Why? Well because it is what my son wants.

I never thought my child would want to be the only child in the school nativity without his mum or dad sitting proudly watching. I never thought my son would want to collect his annual achievement award with no-one to cheer him on. The thing is though; I am not autistic, he is.

He sees the world very differently to me and this is a great example of that. I see his school as somewhere I want to be highly involved with and engaged with. I want the emotional feeling of seeing my only son being on stage and taking part in things I never thought he would be capable of. I want photographs and memories to treasure of him dressed in costumes and joining in. I am really wanting it all for me. Isaac though sees things very plainly: mum belongs at home not school. End of.

Seeing me at school, for whatever reason, causing him far too much distress. That distress, confusion and even anger, has now built to a point where it is no longer safe for me, or for staff, to have me at school events. Isaac gets so upset at seeing me and so anxious he can harm himself and others. That distress lasts a long time as he just can not process the fact I have appeared somewhere that, in his mind, I should never be. When he comes home from school his anxiety is set off again as he sees me back home and he must wonder how I was at his school 14 miles from home just a few hours before. He doesn’t have the cognitive or processing ability to understand fully that I could drive there and back (after all he never drives so how could I?) and the whole evening becomes challenging for the whole family. Things get thrown, broken, we get screamed at and he is in obvious distress. We can not ‘talk it through’ since at 9 he has no speech at all. It is awful and heart breaking for everyone.

So I have had to lay aside my own desire to see my child at school. I have had to take the very difficult decision to never see another nativity play he is in, or visit him in his classroom. It is even harder when I know he is actually excited to see other parents do these things…just not his own mum.

I could disguise myself and sit at the back of the hall I guess but what if he did somehow see me? Is it worth the upset it causes him?

I will continue to support his school by sending items in, communicating via his home school diary and giving money as required. I want much more, of course, but I hope they understand that this is the best way now. I pray they take photos that I will never be able to take and maybe even record events on video if possible. It won’t be the same as being there for me but what can I do?

I miss out on seeing my son do so much already. I miss out on hearing his voice, or teaching him to ride a bike, or even playing a simple game with him. I just never thought I would miss out on seeing him at school too.

New year, new term, and a new way of putting my son’s needs before my own.

This is the right thing for my son, for his sister and for the whole family. I have tried for five years but that’s it over now. From now on I will no longer attend anything at my son’s school and for us this is hopefully going to help make the next year more manageable and pleasant for us all.

Sometimes though I just wish autism was a little less hard on my heart.

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Autism: When your child’s obsession consumes the whole family

My son love lifts. He has done for many years now. He watches lift doors open and close on YouTube, he knows every shop in our town and beyond that has a lift, and when he has hospital appointments we HAVE to visit every lift in the entire hospital. 

It is consuming! 

It rules his life: He is drawn to lifts like a magnet is drawn to metal. He can not simply walk on by or use it for the functional purpose of just moving up one floor. No! He has to press every level, every single time. He has to get out at different floors and watch the same doors open and close from every possible angle. He has to flap, dance and giggle at people getting in, people getting out and the repetitive announcements telling you which floor you are at. He has to touch every wall, put his ear to the back and have a fit of the giggles at me preventing him from pressing the emergency alarm…at every single level! 

It is consuming!

I can’t just go to the shop to pick up milk or a loaf of bread because my local supermarket happens to have a life in the car park and two inside the shop. He either can not come with me (which involves a complete meltdown because despite having limited understanding he seems to be able to sense I am going to somewhere with a lift!) or he comes with me and I risk leaving having only made it to the lift! Moving him on is almost impossible. It involves him self harming, screaming, physically dragging him and sometimes calling for backup. It is not pretty. 

It is consuming. 

He loses all track of time in a lift. It is like an entire world to him. He loves the noise, the echo, the shiny walls, the confined space, the predictability, the voice that comes out at just the right time, the buttons he can press, and the feeling of it moving. It is exciting. It is his ‘happy place’ and he would stay there all day every day. I can’t let him do that though.

So I film him so he can watch himself back. I use ‘first and then’ and desperately bribe him to come away. I use timers and warnings. I use visuals and talkers. I could send God himself to rescue him but he still would not care. 

He is consumed by his obsession and nothing will move him on. 

Isaac is loved deeply. We allow him time at his obsession even though his sister would rather stick pins in herself than be at a lift! But what do you do when every family outing, every waking minute on YouTube and every google search (for images as he has no ability to read or write) is all consumed with your child’s obsession? 

There has to be a balance. Isaac has no understanding why he can not be utterly saturated in his own obsession. He has no awareness of the needs of others or that shops even have closing times! He craves the sensory feedback of lifts like you and I crave water and food. To deny him that would be to destroy him. 

So what do you do when you are consumed by the needs and wants of one member of the family? 

It is hard to get the balance right. We have tried the splitting up idea where one adult has the thrilling day of lifts (yes I am being sarcastic!) and the other entertains his sister. That causes resentment eventually. We have tried days without lifts (that was that awful screaming you heard ringing in your ear thousands of miles from me). We have tried compromising (have you ever tried to reason with a severely autistic non verbal 8 year old? It isn’t fun!). We have even tried the seesaw approach of you get a lift and we all get something we want too. That went down like a lead balloon!

There is no ‘little bit’ when it comes to an autism obsession. There is no ‘forget about it’ days. 

It consumes them. It consumes us. 

We are trying to teach our son patience, self control and limitations. Meanwhile he has other ideas…

P.s. I spent so long at a lift today I typed most of this up while watching him! 

His obsession really has consumed me now too…I am even writing about it! 

That is what happens when your child’s obsession consumes the whole family! 

——-

This article first appeared on http://www.autismawareness.com where you can find other great articles and information on autism.
A link to the original piece can he found here.

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 parents who can not leave the house with their own children

 

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I only had one of my children with me tonight for a simple trip to the store for bread. My pulse was racing, my eyes darting about and my body sweating…all before I had even got him out the car! My son has autism. He does not respond to his name, has no awareness of danger and experiences sensory overload. He is unable to speak. Taking him out of the safety of our own home is dangerous, difficult and demanding! He happens to have a twin sister who also has autism and despite the fact I am a confident, independent person I really struggle to leave the house with my own children.
Thousands of parents throughout the country are in the same position.

Can you imagine what it must be like to not be able to leave the house with your own children?

Here are the six top reasons people gave me for feeling unable to go out with their child or children with autism:

1. Refusal.
Angela from Lerwick put it like this : “At the moment I’m struggling to get my 3 year old out of the bedroom let alone anywhere else. He’s been in the room for 3 days now.”
Lisa from Hartlepool told me, “(my child with autism) won’t walk far before lying on the ground and refusing to move.”
Another mum wanted to remain anonymous but told me, “I sometimes have to wrestle him just to get him in and out the car.”

2. No sense of danger
Susan from Leamington Spa said, “I have three kids, two with autism, all going in different directions with no sense of danger!
Katie from Leeds agrees, “My asd child needs my full attention and I need to be running after her etc for her own safety constantly
Danielle, also from Leeds told me, “I struggle at times because I have to risk assess every place we go..”
Michelle, from Lanarkshire in Scotland has a similar problem: “I struggle sometimes with my eldest (8) who has ADHD. She rushes everywhere and often runs off.”

3. Aggressive or violent behaviour
Vicki, from London put it like this,”I find it hard to take Sophie out due to her anxiety & behaviour. She lashes out, screams, hums, kicks and generally anything she can to make our time out together pretty stressful.
Some parents are so upset at their child’s behaviour they wanted to remain anonymous. One told me: “I struggle as he is getting bigger and stronger his behaviour is getting worse and more violent. He attacks me as well when i drive. I am frightened sometimes and also the way people stare at you as well makes me feel uncomfortable as though I’m a terrible mother.”
Shirley, from Glasgow said, “Every outing is a struggle with Blake… his mood swings..his impulsiveness and his temper… I don’t stress about it any longer and I just deal with the situations as they arise and if possible avoid certain situations too.”

4. Sensory issues
One mum shared with me,”My 3 year old needs headphones and music nowadays because he’s become so sensitive to the outside its all too much for him.”
Another, “(my son) has such sensory issues he can’t walk and so I have to carry or push him in his special needs buggy.
Sarah from Warwickshire shared with me about her daughter, “She suffers anxiety and freezes and shuts down when over whelmed.
Nadia from Oxford has a pre school child with autism and told me,”My nearly 4 year old son struggles to be anywhere busy/noisy.”
Melanie, who lives in London shared, “I have two children with autism, I struggle to get my six year old out at all , we use ear defenders but she will still ask to go home.
Stacey from Glasgow know this too, ” I over think when taking zack out and about especially alone because when we go places his sensory issues become x10 and he gets obsessive over silly little things and his climbing is wild people look at me like I don’t know what I’m doing with an out of control toddler – if I did every little thing expected of me and him from others we may as well never leave the house.

5. Having siblings as well as a child or children with autism
Sonya, from Norfolk is really struggling, “I have a 9yr old child with autism and a 7yr old being assessed for asd/adhd and a crazy two yr old. I won’t take all three out because it’s not safe and once my eldest has a meltdown he takes all my attention leaving the other two vulnerable.”
Victoria, from Leeds, and mum to twins said, “I find it very hard as both children want or need my attention. For Joe to enjoy outings I need to put a lot of effort into encouraging him to take notice and prompt him. But his twin sister equally deserves my attention and excitement too! Neither child understands that and I feel we rush the outing and miss out on things that we would have enjoyed.”
Katie, also from Leeds, completely agrees, “Yes it is impossible. I have 2 children, 5 year old asd and adhd and a 2 year old. My asd child needs my full attention and I need to be running after her etc for her own safety constantly, which would leave my 2 year old alone and unable to keep up and I can’t carry her and run after my oldest. So completely impossible.”

6. Public comments and stares
Jess, from Nuneaton, told me some of her experience, “Its not really the behaviour that i struggle with though…its more all the people around me. A lot of times I get people tutting or telling me to calm him down. He’s a tall boy too and we got a lot of comments about him being in a stroller. And of course im just “giving in to him” when i give him my phone as a distraction tool.”
Another carer, who wanted me to keep her identity hidden told me, “When I take him out, I’m not in control of the situation and it panics me. He will not listen to me, run off, or stim either by flapping or humming. I feel like everyone is looking at me, judging us both.”
Shelley, from Somerset, says, “I struggle with the looks, tuts and opinions of others when my son is finding it hard being out. I accept how to deal with him when he’s having a meltdown, it’s not easy but it’s what we are faced with, it’s the judgement of others I find hard.”
Wendy from the South East coast said it caused problems on her recent holiday, “I have 3 children with autism . I get fed up with the looks the tuts. We had to cancel our camping holiday when they found out the kids had autism.”
Linsey from Lanarkshire concludes with, “the way people stare at you as well makes me feel uncomfortable as though I’m a terrible mother.”
Going out with your own children is something most families take for granted.

So how does this impact families faced with autism?

Everyday I find myself more housebound” one carer said.
I rarely go anywhere with them both on my own“, Kirsty, Leeds
Over the past couple of years it has sometimes been made so difficult that we are housebound unless someone is with us.” Kayleigh, Shropshire
Everything needs to be planned to the minutest detail“, Sarah, Warwickshire
Everyday it’s easier to find an excuse to stay at home.” Anon.

This summer please remember the families of children with autism who for various reasons feel they can not leave the house with their own children.

I am one of them.