Finding Autism

Today we visited Oliver’s consultant, the doctor who held our hands through his diagnosis. Today we visited Oliver’s consultant with Edward. 

When we were first told that Oliver may be autistic I was partly relieved - I knew there was something wrong so to be able to put a name to it and learn more about autism was really helpful, and it gave us something to focus on in the worrying time of diagnosis. 

We are now starting this journey again, with Edward, and I feel as lost and worried as I did the first time. 

Part of me hopes that it will come to nothing and with enough time Edward’s problems will get better, not worse. Part of me wants to turn the clock back and start again… if I could just have done that differently maybe he’d be okay… I’m already an autism mum - I know it doesn’t work like that. If Edward is autistic, he was born that way. 

If Edward is autistic, it changes nothing. Mr Miles, Little Ted, Bear.

So I don’t know what I feel so sad, I don’t know why I feel like I’ve failed him, I don’t know why I feel so guilty… 

So many times over the last year I’ve wished people would take the time to understand Oliver and learn a bit more about autism. In that time I’ve been very fortunate to meet a wonderful network of people via Twitter who have either taken the time to understand or taken the time to help me understand, and to all those people I am so thankful. I’m also thankful for days such as World Autism Day and media coverage that helps to raise factual awareness of what autism is and how it effects people. So, I was wondering, hoping, if I might ask you all to take the time to learn something new today and read the following message from my friend Karen, who can be found on Twitter at @cherriemayhem. Thank you, I know that is means so much to me when people are autism aware, I’d like to think we could all be 22q11 aware too. xxxx 

Over to Karen: 

Here’s a short (ish) take on 22q11 and what it means for Samuel and me.

Chromosome 22q11 deletion syndrome is apparently the second most common chromosome syndrome after Downs, however, unlike Down’s, generally people no nothing at all about it.

Samuel was born with a submucous cleft palate, as are many 22q11 kids. This meant that as a baby he could not suck, and that i could not breastfeed him. However, this wasn’t diagnosed at birth and his poor feeding was put down to my inexperience as a first time mother. Samuel suffered many illnesses as a baby/toddler, spending periods in hospital with croup. After investigation they found that he had narrow airways, but still did not find or diagnose the cleft palate or 22q11.

Samuels general development was on the slow side, sitting at 8 months, crawling at 10 months, first tooth at a year and walking at 16 months.  All were within normal limits though, so no one thought anything of it.

Speech was the significant factor.  Samuel didnt babble like other babies and only made quiet sounds.  His speech didnt develop properly, he couldnt make many of the sounds needed to be understood.  He couldnt say the consonants.  Cat was ‘a’, mat was ‘ma’, cup was ‘u’ dog was ‘o’ etc.  He was referred to speech therapy at 3 years old.  It was agreed that his speech was very nasal sounding and he couldnt blow, he couldnt even blow candles out on his birthday cake.  He also still found it hard to suck, Samuel has never liked drinking through a straw, even now he will take a straw out and drink straight from a glass.

At 4 years old we got a referral to a specialist speech and language team at Salisbury Hospital.  They carried out a special type of video x-ray and found the submucous cleft palate.  They also were aware of the link between submucous cleft and 22q11 deletion, so carried out a FISH test.  Sure enough the result came back positive.  22q11 can be passed on by a parent, but it can also just happen. Samuel’s dad and i were both tested but both negative.

Once Samuel was diagnosed i was sent home with the name of a good website to find out more about it! The genetics team made arrangements for some further tests on his heart, kidneys and calcium levels, all of which can be affected, and the speech and language team booked Samuel in for an operation to repair his palate.  Thankfully Samuel is lucky in that he has no heart problems (many 22q11 kids have heart issues).

The operation on Samuels palate did nothing, and a second operation was done the year after. Still not much improvement and speech therapy sessions are few and far even now!

Of course in all this Samuel started school.  He couldnt read or write, and the teachers and other children could not understand his speech.  The SENCO was rude and unhelpful, and when i asked about the process for getting a statement of special educational needs she told me i would never get one for Samuel.  A year later, after myself requesting the the LA carry out a formal assessment, i had a statement for him giving him 10 hours additional one to one support each week.

Samuel moved schools soon after.  His statement has been reviewed a couple of times and he now has more hours one to one….in fact he virtually has full time one to one support or small group work.  At his last review i requested a change of school to a special school as i feel Samuel needs more specialised help, and as his teachers are clearly saying that he could not cope with mainstream secondary school,  i feel that it is better he be moved now so that he has time to settle in and also to avoid him becoming increasingly reliant on one to one teaching.

He can read short words and has grasped phonics and sounding out words at last! He can write very neatly but he is slow and it hurts his hands due to hypermobility.  He cant put a sentence together yet without help, but he can spell some small words.  His maths is at a basic level.  He can add up single numbers, and he can do his 2, 5, and 10 times tables.  He’s a good 2+ years behind his peers educationally, and socially even more.

Samuel’s speech remains unclear, and it is apparent that he doesn’t have a very good understanding of language.  He thinks very literally, so asking him to pull his socks up in the way we would mean it would actually lead Samuel to bend down and try to pull up his socks.  

Samuel still wets at night.  Its frustrating.  He sleeps so heavily he just doesn’t wake to go and his body cannot hold on.  This means wet bedding every morning and Samuel has to shower every day, which is an issue as he doesnt like to wash.  Havent yet figured out why, he says he doesnt like the water on his skin (although he lives swimming).

So this leads me on to behaviour.  We have good and bad days, then we have really bad days.  I have tried all manner of behaviour and discipline techniques but none work, or if they do they only work for a couple of days.  Then we have the obsessions.  Samuel becomes fixated on something and we cant get him to concentrate on anything else at these times.  His obsessions will wake him in the middle of the night.  Samuels concentration is poor anyway, but his varying obsessions distract him even more, at home and at school.

Physically, Samuel is short for his age, but stocky.  One of his obsessions is food and i have to keep a careful eye on his eating.  He’s generally well now, so i think his immune system has built up over the years.  He gets leg pains sometimes, this is caused by tight hamstrings.  His gross motor skills are. Ot much better than his fine motor skills.  He has leant to do buttons and zips but is slow, he cant tie laces.  He cant ride a bike without stabilisers.  He cant run very fast and he has poor muscle tone.

For me, i find 22q11 is a never ending learning curve.  We know what Samuel is struggling with now, but we have no idea whether anything else will crop up, or if he will make any significant progress.  I have days where i feel all fired up and ready to fight the next battle (as i have had to fight for all the medical and educational help for him), and then i have days where i feel im losing the battle, that it all seems so unfair and i dont have the energy to keep fighting.

I hope this gives you a little bit of an idea about 22q11

I’ve not been feeling myself: i’ve been wanting some time off - that inevitability leads to, what I now call, ‘mothers guilt.’ Feeling like you can’t cope is really debilitating, ironically it stops you dealing with your problems and there lies a vicious circle. So I wonder what it’s like to be my little boy, suddenly feeling like he can’t cope at any given time, for any given reason: at least I know what my problems are… Tomorrow I have to find some courage to do something i’m finding hard at the moment and that’s facing up to the world, being the parent that sticks out, being the one who can’t control her children and doesn’t seem to care about it - we’ve been invited to a party. It couldn’t have come at a worse time for me but finding courage to carry on when you feel like you don’t want to is something people do, and i’m sure it makes us stronger.

Whistling in the dark meant nothing to me until tonight, just a line from some song i’ve heard, sometime. Sitting here, in the dark, not whistling got me thinking. There is so much I want to shout about, so much injustice and spitefulness I want to tackle - instead I just sit and read and retweet it hoping someone else will start doing the whistling for me, outside - where it’s supposed to be done… I just don’t have the strength or the words to tackle the housing crisis, the cuts that hit hard and deep, the remote controlled minds of those who prefer to switch off than face up to what this government are choosing to do the people who need support the most. I can’t take on energy companies, petrol prices, NHS reforms but I want to, oh I really, really want to. At the moment each day, as it is for many others is just about getting by - my admiration and gratitude for those who are fighting on my behalf is not measurable - to those people, thank you: i’m just whistling in the dark.

About this time last year we were preparing to board flight 01 - destination unknown. Whenever we think we’re about to land we seem to shoot back up into the air, and off we go again: that’s diagnosis for you.

There are lots of assessments coming up for our 4 year old in the Spring; landing is in sight. I recently met the Educational Psychologist who will be observing our little boy, he told me a diagnosis is like a sticky label, and one our child could do without. Immediately I felt panic and anger - why would he say such a thing? To us a diagnosis gives our son a fighting chance against a world that seldom recognises difference. It gives him a chance to be himself, without pressure to conform. It won’t be a shackle, it will be his liberation. Liberation? Yes, that’s exactly what I feel. Who will recognise his individual needs without it? What services can he access? How will he understand the differences between himself and his peers?

I hope, with a diagnosis, and as he gets older, he’ll take comfort in knowing he isn’t different - just part of a more exclusive gang.

Recently someone told me that to punish a child for something that is beyond their control was cruel, next time I see that person I will thank them for that.  We were discussing my son lashing out at his brother, biting, scratching, clawing, hitting; all very distressing and brought on by what seems to us as irrational triggers. Little brother may have called a dinosaur by the wrong name, or he’s heading towards a herd of buffalo that have ‘feelings’ and can be ‘hurt’ by small feet - what we and little brother see are 9 packets of baby wipes arranged on the floor; he doesn’t. 

I didn’t know how to handle this lashing out, I used to shout ‘NO’ and take my son to his room and tell him why hurting others was wrong, he used to cry and shout out for the buffalo, left alone with no defense against his brother. I encouraged him to say sorry, and he did, but it meant nothing. I cried and shouted and pleaded but I failed to understand - how can you until someone tells you that it’s okay to rip up the rules. ‘Your son is probably going to be diagnosed as autistic, you must start to handle his behaviour like he has already been diagnosed.’ What do I need to do? ‘You must not shout at him, or change your voice in any way, you must not take him out of the room, you must comfort his little brother, you must try to make sure whatever it is that caused him to lash out is fixed and you must not make him say sorry for something he can’t control, not yet.’ I thought this would be impossible, it went against everything I thought was socially acceptable. We did it though, and now we have a much better understanding of our son, why things upset him and what his triggers are. He appreciates our understanding, I can tell, I can see it in his eyes. If he lashes out at me now I tell him I love him and I understand that he’s upset, I see relief in his face and it makes me cry. ‘Let me glue your tears mum, that way you’ll never be sad’. 

Finding autism meant finding the answers to so many questions for my family, here’s a few… Why can my little boy only eat fish fingers, marmite sandwiches, dairy free chocolate and ‘cut up apple, not with the skin on’? Why does he get so scared and frustrated when we drive a different way home? Why does he get so angry at the smallest change in routine? Why do some clothes ‘hurt’ him? Why is he so scared by noise? Why won’t he let me cuddle him? Why doesn’t he respond sometimes when he hurts himself? Why does he hate the sun so much? There were more questions; lots more. Then, when he was 3 we went to see the doctor and they asked me ‘Do you know what autism is?’ Yes I thought, but he has language, and lots of it. I didn’t know about autism, not really. I didn’t know about the autistic spectrum and how every child, despite sharing some behaviours, is unique. I didn’t know about aspergers; I didn’t know how hard it was for a tiny little person to try and be moulded to fit into a world that doesn’t do things ‘right’. I do now. Today is his 4th birthday and despite helpful interventions we’re still on a waiting list to receive his diagnosis; which is likely to be on the highily functioning end of the autistic spectrum, or aspergers. Today we’ve had to put away decorations and take down cards as they over stimulate him - the change in environment is a sensory overload. Instead we’ll look at the cards and keep them in a pile. He’ll put them in size and colour order and if he gets too excited he’ll rip them up. That doesn’t mean he doesn’t love his cards, it means he loves them too much: that’s why I carry sticky tape around in my handbag. Today he was so over come with his birthday that he couldn’t get dressed, our little 4 year old spent hours running around with nothing on because he couldn’t stand the restriction of clothes. Today he ate dry pieces of bread, sat and rocked with his hands over his ears because he couldn’t cope with the noise of his brother crying, lashed out when he thought we’d mistaken his book for a library book but he also named 12 different species of whale - without giving it a second thought, gave his dad a cuddle and counted to 70. Seeing him struggle and get through the things many of us, understandably, take for granted makes me feel so proud to be his mum. Happy 4th Birthday my special little man.