Autism Doesn’t Define My Daughter. But It Does Make Her More And Not Less.

Autism poses undoubted challenges in our life, and there are days I wish I had never heard the word. Days when Number One’s anxiety overwhelms her, and days when I am annoyed at the world for not being a little bit kinder.

In the early days worrying about Number One’s future was all consuming.

I had no idea what Autism would mean to her or to us. I was frightened that no matter how hard I tried, I would never be enough.

These days however those days of worrying come far less often.

I look at my beautiful, talented daughter and am overwhelmed with pride at just how far she has come. Number One is who she is because of the challenges she has faced, because of the mountains she has climbed and because she has autism. Autism is part of her. And if I am honest, on balance that is a good thing.

Number One is a perfectionist.

I know that whatever she does she will do to the best of her ability. Whether it’s her beautiful handwriting, a homework assignment or tidying the toys. I know any job done by her will be one done properly.

She is a specialist.

If something interests Number One, she will find out anything and everything there is about it. I would hazard a guess that there are few of you that could challenge her knowledge of Harry Potter or our local radio station. Right now there are times when both these things drive me more than a little crazy but I know that her desire for in depth knowledge will stand her in good stead for the future.

Number One is the ultimate rule keeper.

I know if I set a rule she will follow it always. I know with her there will be no worries about underage drinking, or calls from the police in the middle of the night to tell me her teenage self is in trouble. She sets great store on the importance of rules, and that is a very good thing for me as her mum (though admittedly I am sure her friends occasionally feel differently).

She is kind.

Number One understands that sometimes life is hard, and she knows – that particularly in social situations – she makes mistakes. It makes her much more tolerant of the mistakes of others. She forgives easily and is always ready with a warm hug if someone is feeling sad.

Number One is the best big sister in the world.

I am continually astounded with how much Number One adores Number Two. Even when he is annoying (as little brothers can be), somehow he manages not to get into trouble. She loves the idea of unconditional sibling love and relishes in his mutual adoration of her.

Autism doesn’t define her. But it does make her more and not less.

If I had known back then, in the early days, what I know now, I would have had so many fewer sleepless nights.

Not because of the above. Nor because she’s intelligent and caring. Not even because I know she will figure out her own ways to be successful.

But because of something far more important…

She is happy.

And at the end of the day that matters more than anything else.

The Moment I Knew My Daughter Has Autism

In hindsight there were a million clues that should have alerted me. The moment I knew my daughter has autism should have come sooner.

I was no newcomer to autism. I’d spent my University years alternating between Options and ABA, polar opposites maybe, but both positive in their own ways.

I wasn’t looking for it though. Not at home.

She was as bright as a button. In fact I remember the health visitor coming to do her two year check. She was fascinated by her infinite knowledge of different birds. Asking her over and over again to name them.

She wasn’t worried. She was impressed.

I should have known better.

She didn’t like to talk to people. She’d sit in her pram and hide under the hood. They would chat away. But she would refuse to look. ‘She’s just shy’ I’d say.

I should have known better

A room with more than five people in resulted in an instant meltdown. She would kick, she would scream, she would demand to go. The baby groups, she’d loved so much, became torture. ‘It’s just a phase’ I said.

I should have known better.

Games were complex, with hidden rules. We’d be princesses. But not just any. We had to follow the script, to learn the lines. The lines she already knew. One wrong word would result in heartbreak. ‘She’s an only child’ said Nursery ‘She just needs to spend more time with others’.

I should have known better.

I did know better. The rigid routines, the refusal to wear clothes that were different, the lack of interest in others. I knew. I had known for months. But I hid. It was a truth I wasn’t ready to see.

This wasn’t a child I was working with. This was my baby. I told myself I was being paranoid. All children go through these phases, right? I refused to acknowledge what was right there. I wasn’t ready.

Then one day I drove to nursery.

My baby girl stood there. Alone in a corner. Crying and screaming. Oblivious to the outside world. She had wellies on you see. Wellies were for dog walks, for splashing in puddles, for having fun with mummy. Wellies were not for Nursery.

Nursery thought she was being silly, they’d forced them on her feet.

She’d let them and then she’d sobbed.

And they’d let her. ‘She needed to learn’ they said.

But I knew. I did know better.

I drove home and rang the National Autistic Society, I booked a private assessment. In hindsight I was still in denial – I didn’t want to waste an NHS appointment, an appointment another child really needed. I would do it privately, reassure myself that all was fine.

The rest of the story of course you know, Number One was diagnosed privately at 2.5. She had an NHS diagnosis before she was three. It was confirmed, my daughter has autism.

We are the lucky ones. She and I. I did know better. My background held me in good stead. I ignored Nursery, and moved her soon after to a more supportive placement.

I often wonder what life would be like if I hadn’t had the knowledge I do.

Professionals need more training in ASCs. Families need them to guide the way. They should be the ones that know better.

The moment I knew my daughter has autism should have come sooner.

Spectrum Sunday

What Choices Do You Have If There Isn’t A School That Can Meet Need?

The current reality in many authorities is that academically able children with autism are often difficult to place. At secondary level there often isn’t an obvious school that can meet need.

Primary schools, in many areas are doing an excellent job. They are small, contained and have staff that know their children well.

Many children on the spectrum cope relatively well at primary level. It’s a sheltered environment where accommodations are easy to make. They are surrounded by children who have grown up with them, and who on the whole are accepting of their differences.

The transition to secondary school is a difficult one.

Mainstream secondary schools are big, they are scary and they are impersonal. Accommodations are often more difficult to make. In addition, for children who are academically able support is often lacking. Added to the mix are noisy corridors, enormous dinner spaces, and a whole host of new children fighting for their place in the pecking order.

Secondary school staff deal with more children. They also get less personally involved and on the whole know their children less well.

They can make inclusion work. And some are committed to doing so. The ones that are exceptional can make a real difference, but the reality is they are few and far between. And even the best, may not be able to meet the needs of those children whose anxiety levels are the highest.

Yet, traditional MLD and SLD schools are often not the right places either.

They are quieter, more controlled environments which are less assaulting on the senses. However their curriculum is often not appropriate. And perhaps more importantly they also often fail to provide an attractive peer group for more academically able students.

As parents there are therefore several other choices worth considering.

EBD settings (schools for children with behavioural difficulties) are often ones that parents of children with an autism diagnosis shy away from.

However a good EBD school is worth considering. EBD schools are often highly structured environments with clear expectations. They have clear rewards and consequences. Additionally, the children who attend them need lessons providing in an engaging way to keep their interests. Staff are trained to deal with challenging behaviour, and are forgiving in the event of it. They are not the right solution for everyone, and not all of them will be right for children with Autism. However, they are worth looking into.

Privately Funded Settings.

Local authorities will not tell you about privately funded options in your area. However, if they can’t find a School which meets your child’s needs these are an option you can look into and make a case for. This can include privately owned special schools and traditional independent schools.

Privately owned special schools are expensive and therefore will be a reluctant choice for most authorities. However, because they are expensive they can also afford to be more flexible, provide more bespoke curriculums and higher levels of support. You will need to make a detailed case about why this is the only setting that can meet your child’s needs, but the reality is that at least some of those parents who fight for places in them receive them. Many authorities do not have enough in authority places, so increasingly they are having to look at other options.

Independent schools can be a double edged sword, but for some families they are the answer. They have small class sizes, and are often both more structured and have higher standards of behaviour than traditional comprehensive schools. This makes them an easier place to succeed for some students on the spectrum. They are however often lacking in SEND knowledge, and can find behaviour of any kind difficult to deal with. They work best for children who internalise their anxiety, and need to be looked at and spoken to carefully to make sure they are the right place.

For some children, none of the above will work in isolation.

A combination approach is well worth thinking about. This enables a student to split their time between two different settings – or between a school and a more relaxed environment.

The reality is the more difficult the child is to place the more flexibility the authority has in placing them.

Think about what will work for your child and propose it. You may not get it, but on the other hand you just might – especially if it’s an option that is cost effective for the authority to make happen.

As always if you have any questions please do ask.

Tackling Food Aversions With A School Aged Child

In our house we’ve dealt with more than our fair share of tricky eaters. Aside from Number Two’s reluctance to swallow, for many years Number One (like many children on the spectrum) ate very little. Her staples were pizza, pasta, Tesco’s grated mozzarella (and yes she did know if I bought it from Asda), and fruit. Ways of tacking food aversions with a school aged time were something I seemed to spend a long time looking at.

I spent many hours worrying if she would ever vary her diet.

Then suddenly aged seven, she decided enough was enough. The change was hard for her. But she was determined to do it. She was sick pretty often whilst she got used to the new foods – her aversions had built up over the years, but somehow together as a family we got through it.

With the exception of fish (which she eats reluctantly), she will now eat pretty much anything.

What’s more she enjoys it. She relishes trying new things and will happily go out for meals. It’s a far cry from life before.

A big reason for the changes that happened was because it was the right time for Number One. She had started to be interested in other children and wanted to be more like them. She was embarrassed to go to play dates and not eat when offered. So for her the anxiety caused by eating new foods became a lesser anxiety to the one of having to explain why she wasn’t.

Here is a quick list of the things that made tackling food aversions with a school aged child easier for us:

  1. We tried new foods in the safety of home, saving our tried and tested foods for when we were out and about
  2. We made trying new foods fun because we all joined in. I even learnt I like squid in the process!
  3. There were rewards involved, both for tiny tries of new things and for moving foods into the liked category.
  4. We all got points for trying new foods. Number One always had the most points, because there were many more foods she hadn’t tried than us.
  5. Number One got involved in the cooking process. Having fun making the food made it less scary to eat.
  6. If it was a really tricky food, I left the room. The Other Half was much better at staying calm, and talking her down from her anxieties. Whereas I panicked that she would be sick. Number One picked up on this, so sometimes it was better for me not to be around.
  7. We didn’t get cross if she didn’t eat something, but we did present her with a small amount of it again the following day.┬áThe increasing familiarity of it often meant that she gave it a go.
  8. Lots and lots of praise was used, and we involved the whole extended family in the process. She enjoyed telling anyone that would listen which new foods she had tried that week.
  9. We hid some of the trickier foods in others initially, only telling her what she had eaten after she’d eaten it. This made it easier for her to try it in its none hidden form the time after.
  10. Above all we needed persevered. It didn’t happen overnight. In fact from start to finish it took about six months.

This is by no means a golden ticket.

I am sure everyone’s list of things that help is different. After all what motivates one child isn’t what motivates another.

But if you just take one thing from this, I hope it is that there is hope. Even if it doesn’t feel like it. When the time is right for you, together you as a family will get there. In your own time. In your own way.

I believe in you.

How Does A School Decide If They Can Meet The Needs Of A Student With SEND?

In my day job as many of you know, I am an Autism specialist teacher.

I work in a unit for students with Autism that it is attached to a mainstream school. At this time of year I am sent EHCPs to help me determine whether I am able to offer places to for the following year. Ultimately each decision involves deciding if we can meet the needs of a student with SEND. It’s a process which in many ways, within both schools and local authorities is somewhat cloak and dagger. Parents are all too often given very little information about how the process works.

So I thought it might help some of you if I explained my thought processes during this period, and how I decide which students we can accept.

Once we are sent paperwork, we have fourteen days to respond to the authority about whether or not we can meet the needs of the child they put forward. During this time, I read their paperwork (usually multiple times) and speak to their primary school teacher and their SENCO. If after that conversation I feel there is any chance I can meet their needs I visit their school and watch them in their environment.

For me there are two crucial factors, the first is are we the right place for this child? Will we be able to help them to reach their potential? The second is, is this child right for the children who are already with us? I want all my children to learn and be happy. If I feel that that will happen, I usually say yes.

So what questions do I ask? What do I need to know before I make a decision?

  1. What does the child look like on a good day? I want to understand how well a child can perform so I can see how far they can come. I don’t want to see them on a bad day and not give them enough credit for what they can do.
  2. What does the child look like on a bad day? – For me, this is primarily about making sure I will be able to keep them safe. I need to understand what I need to put into place in advance. I want to make sure that even during their worst meltdown they and everyone else are ok.
  3. What are their behaviours? – People often try to give me a rosy picture here, but it isn’t necessary. I ask this question to make sure that none of their behaviours would cause distress to any of my other students. Not because I am worried about challenging behaviour. As an example, with the current cohort. A student who was physically aggressive to staff would be accepted, a child who repeatedly tapped a pen on a desk wouldn’t. Next year, pen tapping may not be an issue whereas something like door slamming could be. I need a clear picture to ensure everyone in the unit can learn.
  4. What is their academic potential? Many of my students come to me unable to read and write and therefore have very low levels. I need to know whether these levels are what they are capable of. Or if the levels mask their true verbal ability – which is often the case. I need to know whether our curriculum will be right for the child. At KS4 level, for me, this means having the ability to understand a GCSE style curriculum – even if their anxiety means that the exams don’t work for them. We are a small unit, and therefore for those students who can’t attend mainstream, our ability to differentiate the delivered curriculum is limited. We can differentiate outcome without a problem, but the content is harder.
  5. Do the child and parents want the child to come to us? We are always oversubscribed, and for me this is important. Parental support is an enormous factor in whether our placements are successful. For the older children, a desire to com to us is important – many of our KS4 students struggle with attendance prior to coming to us, I need to know they are committed to attending.
  6. Will the child fit in, in the unit? Will they be happy? – We have a very small intake of four students per year, as a group those students need to gel together, have interests that are compatible and be happy together. That doesn’t mean they need to be identical to each other – they can be very different (and often are) it just means they need to be relatively interesting and non-annoying to each other.
  7. Can I afford to take them? – Is the level of funding being offered by the authority enough to enable the student to be successful in our provision. If it isn’t, it doesn’t usually mean no to a placement but it often takes longer for the placement to come through, as we then need to go into further discussions with the authority.

The bottom line in my decision making process about whether we can meet the needs of a student with  SEND is, are we the right place to enable a child to learn. Transparency and honesty from both parents and previous settings is really important.

I lose more sleep at this time of year than any other. It’s hard sometimes to see into the future, and yet that is what we are asked to do.

Parents are our best allies, the more information you can give to settings at this stage – about the good and the bad – the higher the chances of a long term successful placement will be.

As always if you feel I can help or you have any further questions please don’t hesitate to ask.