Homeschooling: Tackling Literacy

Literacy has been Aiden’s particular strength. Alphabet is his ‘stim’, he started by ordering the alphabet before he was 18 months old, all letters perfectly lined up. Next came the stage where he started to copy and construct words using chunky wooden letters, and finally now he likes to recreate the titles of his favourite stories or sentences that form his echolalic speech. He has perfect grapheme-phoneme correspondence. But what became a big bug bear at his previous school was that they could not take his scattered knowledge and make it fit into the framework of the UK national curriculum, and therefore they were incapable of ticking off any of the boxes. Aiden left his school in December apparently not literate. Oh well…

Now that we are home schooling we have the freedom to teach Aiden how he learns. He can sound out each letter in a word but cannot/does not blend. He prefers to learn words as whole chunks. This is the case with many children on the spectrum as many of them have very strong visual-auditory memory. The first thing I did was device a game using reusable blank stickers. I wrote one word per sticker, asked Aiden to read the word out loud, and then stuck it to the living room wall at eye level. Very casually, everyday we would practice words from the current ‘bank’. I encourage his to use the stickers to try and construct simple sentences. This has been a particularly gratifying challenge as Aiden is a child who cannot yet speak in full sentences. Reading aloud a 3 or 4 word sentence he has constructed will immensely help his speech and communication. Working within the national curriculum framework we keep rotating the words on our wall and this has really captured Aiden’s interest.

 To augment this learning I have started using an assistive app. (I am a HUGE fan of assistive technology. While acknowledging the very divisive nature of iPads, I have found them to be invaluable in augmenting my children’s learning). Nessy are makers of literacy apps that I have used in past with children with a range of learning and development difficulties. Their app Hairy Words takes children through the entire one hundred high frequency sight words, teaching children to read, spell, and type the words. Aiden finished the first twenty words in less than a week. He is completely taken with this app. I have it on my iPhone and allow him to ‘play’ with it at random places. It kept him very calm, happy, and settled during a four hour long new years’ party with school friends.

To help Aiden practice writing, I have printed and laminated a cursive alphabet worksheet. With a set of dry erase markers he set to work on his sheet one evening and kept at it till he got most his letter formation right. He even wrote his name on this one independently:

And this week my goal is to get Aiden writing simple sentences. Again, the biggest obstacle is his inability to formulate sentences that are his own. His independent, non-echolalia speech is still limited to 2 or 3 word phrases. So I have started with a very simple context: his family. Providing him with visual prompts, simple and repetitive sentences, and a writing frame the idea is to get him to become secure with extremely basic social communication. He will read the sentence, contextualise the language with the visual prompt, and trace over the words while saying them out loud. Well, thats the idea anyway. We will see if it works. Personally, I will be well chuffed if I can get him to start saying “I am Aiden” when he meets people.

I hope you find some of the ideas here useful for your children/learners. Any feedback will be much appreciated.

Homeschooling: Getting off the mark

Since things did not really work out with a particular school we have made the decision to homeschool Aiden at least for the time being as we continue to search for the right place for him. I have found the challenge of setting up a homeschool to be very interesting and I have to say that together Aiden and I have learnt a lot in the past 6 weeks. I now plan to document the strategies that are working for us and hope to find more ideas to help us get over rough patches and discover more interesting ways of approaching our learning.

I invested a few days of pure research into setting up a homeschool, specifically one for an able autistic child. There is a HUGE amount of information out there and it can take months to sift through the websites and blogs. However having a fairly good idea of what your child’s learning style is can help you get off the mark quite smoothly. Here is how we have chosen to start:

Zoning: I have made a very deliberate effort not to convert the entire house into a school. Ideally, if we had the space, I would have liked to convert one room into a learning room/schoolroom. Given space constraints I have had to improvise. We only do ‘schoolwork’ on the dining table with Aiden sat on an IKEA high stool that provides him with the right elevation needed for writing.

Tools: My most expensive purchase was a good quality coloured printer. This allows me to prepare resources as well as print out photographic evidence on Aiden’s progress. Other tools included a laminator, sturdy storage boxes, stationery, a NUMICON home kit, OT pen and scissors, a visual timer, a hundred square, snap cubes, a box of plastic teddies (huge hit!), and some outdoor toys. We made an effort to stay within a small budget as it’s entirely possible that you will end up with tonnes of things gathering dust.

Storage: I have been very particular about storing the ‘school’ materials and toys separate from the children’s everyday playthings. The children understand that when material comes out of the ‘school boxes’ we will be doing some more focused learning. It also prevents the schooling material from being lost in the flood of regular bits and bobs in their playroom. That said, I have allowed that line to be crossed with certain resources as that allows for the learning to be carried beyond just the schoolroom into the child’s less structured play and that provides rich opportunity for both reinforcement of the lesson focus and also allows me to evolve the next lesson idea by observing his play. I shall discuss this in detail in a separate post.

(My boxes for Literacy, Numeracy, Logic/Problem Solving/Motor Skills, Craft, and Stationery.)

Human Resource: In my case this was invaluable. I simply don’t have the strength and patience to go it alone. Just keep in mind that by taking the decision to homeschool your child will be with you constantly, 24/7. There is a very real possibility that you will be sick of each other very soon. Also, it is a huge responsibility and I have been reduced to tears of frustration as we have struggled with addition facts and number bonds. (More on that later). I have been supremely lucky as I have been able to find a wonderful person who helps me with the homeschool. She brings in a fresh angle and approaches that are very different from mine. She has incorporated a number of very physical activities to break up the more desk based learning, like giving Aiden frequent breaks to jump on the trampoline, taking him for rides on a balance bike, giving him a big tub of uncooked rice to blow off some steam through sensory indulgence. If you can go it alone, more power to you. If you can find someone to help you along this journey by all means embrace this opportunity.

I am very excited about how much we have learnt. Aiden is now reading, writing, adding, his motor skills are improving, and he is learning that sometimes he has to finish a task assigned even when he’d really rather not. Naturally, there are huge obstacles. Primarily, given his very poor language skills it almost impossible to test his comprehension of text, to teach him about the world around us, even simple math is so language rich that one is flummoxed. However, if I have learnt one thing its that dwelling on what he can’t do will get us nowhere. Patience is the key. There was one area where we had no progress for weeks. Then I tried a completely different approach: different media, different resource and suddenly there was a breakthrough. So for me the key to success with homeschooling is to accept that progress will come in fits and starts. A parent of a now successful young man with learning needs once told us that it’s always one step forward and two steps back and suddenly your child will sprint. Then come to a stall again. Couldn’t have said it better.

Looking Back at 2015

2015 was the most difficult year of our lives so far. But it was also a year in which our little family learnt so much about love, our own strength, and came to terms with the fact that we will forever be a family on the spectrum. The most profound words I heard this year were from my amazing sister-in-law: “Autism is not a dirty word”, and this was a singular moment that really made the Mr and myself realise that as long as we hedge and shy away from saying it loudly and clearly that our son is autistic, we will continue to harbour some latent shame over who he is. And we have found that telling others about Aiden’s diagnosis is very often the start of a pretty profound conversation. It can be a random stranger on the Tube who is baffled by why Aiden cannot respond to a polite request to move his foot, and when told he’s autistic, shows a real interest in what it means for him and us. It can also lead to very deep questions by Little Miss H about what life will hold in store for Aiden, will he ever make a friend, will he ever have a conversation, will he ever go to a ‘normal’ school, will life for him ever be easy?

2015 was also the year that taught us the meaning of the cliched never say never. We never thought we’d be able to live apart. Yet here we are: our little family torn in two across two continents. We thought we would never take Aiden out of mainstream school. Yet here we are with Aiden not in school anymore because the lack of understanding and inclusion meant that being at school was doing him more harm than good. I thought I would never be able to teach him anything. Yet here we are having a fairly decent go at home schooling.

2015 taught us a lot about kindness. There was the support from family and friends that helped us through the roughest bits and their unflagging optimism helped us keep things in perspective. But there was also a number of heartwarming instances of complete strangers reaching out to us and their help and sometimes momentary kindness, whether it was encouraging Aiden to pet their dog, or a family in a similar situation helping us jumps through the hoops to get Aiden the support he needs, shone a light that helped restore faith in the goodness that we believe is inherent in most people. I have now had profoundly informative conversations with complete strangers about life with autism that have lifted me up. These people took a few minutes to try to understand a situation rather than resort to judgement. Those few minutes of their time brightened up my day and, in some cases, helped Aiden have a positive interaction that helped his confidence grow just a little bit and helped him come out of his shell for a few minutes as he enjoyed some new experience. There have been a number of such lovely people whose life touched ours for a few brief minutes. We were left richer by those moments and I hope they went away with a little more understanding that autism is not all an individual is, that they are as complex and unique as neurotypical people are.

Looking ahead to 2016, we hope there will be more answers rather than more questions. We hope that the children continue to grow and come into their own. We hope that we able to find a school for Aiden where there is an understanding of the complexity and range of challenges and abilities that make up the autism spectrum. We hope, above all else, that we reach a point where our ability to live together as a family and Aiden’s access to the support he needs are no longer mutually exclusive.

Here is our little family sending big loads of love to you all. May your 2016 bring you peace and joy. If you do one thing in the new year make it this: promise yourself to do one small act of kindness every day. You may never know how much your understanding and support of a single moment might mean to someone.

Happy New Year

“The Reason I Jump”

Yesterday was the first day in a long, long time that I finished reading a book in one sitting. Well, two sittings. Yes, the children ate junk food and the laundry got left in the washer for, ahem, six hours. But hey, you only have so many life changing moments. So this book is titled “The Reason I Jump” and is written by a 13 year old autistic boy who has very limited communication ability. He ‘wrote’ a book using a software that he had been trained to use to communicate. This book is a glimpse into a very rarely understood world and so many of Aiden’s habits and personality traits now have a clear cut reason to them. I’ll give a few examples of how this book has helped me better understand my son.

Why does Aiden wave goodbye with his hand pointed inwards? Why does he jump when he is very happy or very upset? Why does he often use other’s hands as ‘tools’? Why does he find it so hard to pedal a bike, hold a pencil, draw a picture, catch a ball? The answer: a very poor awareness of his own body and very poor control over how his own hands and feet work. I just never knew that Aiden doesn’t trust his own hands to open a door and needs to use other’s for this. He’s effectively waving to himself because he’s mimicking what he sees. He needs to jump because it helps him deal with the excess of emotion that is threatening to overwhelm him.

Why can’t Aiden make eye contact when he’s being spoken too? Because he is so intent on making sense of the words that are being spoken that any other stimulation (liking looking the speaker in the eye) will be too much distraction. The author describes the need to feel the sound coming out of another person in order to comprehend the words. He describes how quickly words escape him once he’s heard them and how difficult they are to find when he wants to formulate a reply. And therefore, this need to resort to stock, oft repeated phrases because they provide the comfort of predictability.

Why does Aiden suddenly bolt? It’s not because he’s a naughty boy who cannot understand that this is not something we do, who wants to deliberately provoke anger, who wants to make his adult’s life difficult. It’s because he has seen something that has so captured his attention that he must drop everything else and go and explore this phenomenon. Which, for you and me, may be nothing more thrilling that a pinecone.

There were so many other questions that I found answers for in this book. But I also came across something that made me very very sad: a constant theme of self-loathing, shame, and doubt. Again and again this child is asking for love and patience. He acknowledges that his meltdowns, his seeming defiance, his habit of repeating the same maladaptive behaviours, are all giving his carers grief. That grief fills him with self loathing but he cannot help the compulsions that are causing the behaviour. He is constantly reaching out for forgiveness and love but without having the words to say sorry. He is again and again asking for patience because our anger hurts him and shakes his belief in our capacity to love him. He tells us that he needs for us to be consistent with the boundaries and for us to enforce the rules over and over. Because, even if it takes years, there will come a time when he will be better able to manage his reactions.

I must recommend this book to everyone whose life has in any way been touched by autism. I’ve just ordered three copies for family! If you cannot find it in your local bookstore or online let me know and I am happy to send one off to you. I will ask that we all make an effort not to talk about autistic individuals in front of them like they are a piece of furniture. I have long known that though Aiden shows no recognition of what is being said, he understands everything. This book has confirmed this suspicion.  Imagine not having the words to let others know that you are hurting their feelings. Imagine being a fully formed functional human with complex thoughts and emotions and being treated like a broken toy that needs only managing. Imagine being subjected to this treatment all your life and you too will want to give up on forming any meaningful human relations.

The Challenges of Being Out & About

Recently three stories have been making the rounds on social media. The first one is about a California family with a severely autistic child who are being sued by their neighbours on the contention that they have failed to stop their child from being a menace to other children. The second story is about the autistic child who interrupted a Broadway performance, whose mum was shamed by fellow theater goers, and who subsequently got a heart warming show of support from the show’s leading actor. The third is a blog post from a mum who writes about how no one talks about the not-so-feel-good aspects of autism, how often families are made to feel shame for their child’s antisocial behaviour.

So in this post I want to explore those subtle ways in which we have been made to feel uncomfortable when out and about because of our child’s autistic behaviour. Aiden, we’ve discovered, loves to use public transport. And after our recent move we have had the opportunity to frequently use buses and trains. He loves boarding the bus, when we are queuing to board he always says a loud “Everybody, on the bus!” and then enjoys sharing the communal experience. Yesterday we happened to take the bus after a break of something like ten days. As a result Aiden was terribly excited and in his happiness he spent the entire bus ride indulging in echolalia and making his happy noises. His happy noises are equivalent to the happy gurgling sounds a toddler would make, except that they are coming from a tall 4 year old boy. Now these happy sounds and the repeated dialogues from his favourite books and shows are not loud enough to disrupt someone else’s commute but people in our immediate vicinity can hear him. And it’s very interesting how people react: a taxi driver who asked me outright, “Is he always this happy?”, and I told him yes, he’s a happy autistic child; a super friendly elderly lady who started playing a non verbal laughing game with him, and knowing full well that Aiden is atypical and “not normal” told me she thought he is one of the most beautiful little people she’s met; and then people whose body language changes when they hear him, there is this subtle turning towards us, the furtive glance in his direction, the slightly embarrassed smile and quick looking away when I catch them staring at my son; sometimes I have even seen a slight shake of the head as if saying “aren’t you ashamed to be out with a child like him”; the mum with her two “normal” kids who couldn’t stop turning around and looking at all three of us: you kept smiling and I hope your smile was meant to say “I am happy to see your son enjoying a weekend bus ride in his own special way”.

Many would say that I am lucky because my child is able to understand the basic rules of social behaviour. We can go most anywhere with him without any special challenges. So I cannot begin to empathise with the challenges faced by others whose children have more trouble negotiating social situations. However thick skinned parents of SEN children become we still feel emotionally exhausted some days. If someone were to openly criticise my son for being happy in his own way in a public place I would very ruthlessly cut them down and lecture them on the needs and quirks of autistic children and make sure they think long and hard before ever criticising another SEN family/individual. But sometimes the furtive glances, the curious stares, the slight shakes of the head, all these are worse than punches to the gut. You come home feeling bruised and emotionally drained. You want to ask what is wrong with world where people feel compelled to stare and shame individuals who don’t fit the ‘box’. No wonder so many families feel compelled to seriously restrict their life experiences because of the stress caused by the ignorance of strangers. I wish there was someway to undertake a community outreach and show people that atypical individuals are also human even if they choose to express their emotions in what might be deemed a socially unacceptable manner. I often feel that if I have one calling left in life it is to make ‘normal’ people more aware of special needs and help them stop seeing such families and individuals as oddities. A happy child enjoying a bus ride and expressing his delight in his own way ought to be a moment quietly enjoyed by all who have the chance to share it. All those starers and head shakers, I actually feel sorry for you because you’ve never come in contact with the pure unadulterated joy that a socially uninhibited individual can feel. 

The Next (HUGE) Adventure

So I am coming back to my much neglected self-reflection corner/blog after a pretty long absence. But its been a busy, busy, and very momentous few weeks. So here is what went on:

H and I had a plan. We called it our worst-case-scenario, the most drastic of measures, the last fallback option etc. But as we headed in June and still not a single school where we would care to educate our child had a place for Aiden, we were willing to be more open minded, cast a wider net etc. I was also lucky enough to find a few support groups online, and was able to connect with many parents of neuro-diverse children through this blog. This allowed us to see that the range of options and the type of support available for such children in certain parts of the world is quite profound. We started a rather aggressive research project, got Aiden’s therapists, his teachers, and a few trusted friends and family members involved in the process. By June we had a list of four schools we wanted to visit. Aiden’s reports were emailed, appointments and visits were set up, and a rather ambitious itinerary was chalked up. A long-ish plane and train ride later we were in sunny, albeit rather frigid, seaside setting. H and I were confident that we will have the right school for Aiden at the end of a week. Well we were in for a bit of a surprise.

The first school we visited was set in 600-acres of woodland, part of which had been converted in to a Forest School. There is a lot of fresh, evidence based research that indicates that Forest Schools are wonderful in plugging up the emotional, social, and communicative deficits in young children. The staff was amazing. They said all the right things: “Aiden doesn’t have anything we have not seen and dealt with before”, “We have had a number of children with similar issues and with support they have flourished”, “Our staff is fully trained to provide the right type of learning environment”. We were elated, these were things we had never dreamt of hearing in our current home city. There was this general feeling that Aiden is no extraordinary outlier and there was no need to hedge and sugar coat the extent of his needs. So far so good. But then we had a rather unexpected twist of events in the person of assertive Little Miss H.

An Aside: Miss H is a very interesting child. She is 6 going on 33. That has been her preferred age for a while now. Extraordinarily clever, somewhat socially awkward, supremely chatty with no social filters, and very very opinionated and stubborn. I will have to confess this lovely trait she gets from her mother. Sigh. We cant all be perfect now. Miss H has got certain ideas that are set in stone. One of them is that she will finish KS2 in her current primary school. And no, you cannot change this fact. We had been worried about how she will take the prospect of such a huge change. I, with my usual bluster, had decided that she will just have to get on with it. Mr H was more sensitive to her emotional state (as always, he’s much better tuned to the children’s emotional needs).

So the curveball we got thrown was rather severe: Miss H refused to take a tour of the school, refused all attempts by the lovely teachers to involve her in the classroom, refused to be excited about anything and everything. Scarily she was not in a sulk. She was in her 33-year-old-woman mode: matter of fact and decisive. Sat herself down on a bench with her Daddy and declared she’s going back home, staying in her current school till Year 6, living with her Dad. And if Aiden has needs that cant be met at home, well he can bloody well come to this forest school place with Mummy, Herself not having any of it, thank you very much. Now these reasons, from her perspective, are perfect valid and legitimate. You just never want to be that parent who had to make a decision that may involve putting the well being of one child over that of their sibling(s).

It was a somber experience. We might find a great school but that was not the end of the challenge. We had underestimated the difficulty Miss H would face making such a big move. We, more-so I, had overlooked her needs, both social and academic. The forest school was great for Aiden, bang on target. But it was not the right place for Miss H. And, yes, she had to have a say in this matter. We don’t exactly own her opinions.

The next day a much subdued pair of us made our way to School #2. This had been our top pick and we were quietly nudging Fate to lend us a hand that morning. We had a long chat with the Headmaster and the Head of SEN. They were very good with engaging and busying two rather antsy children while the grown ups had a boring, acronym laden, serious talk. The Headmaster is an energetic, youngish person who is clearly passionate about his school and has a very clear idea of what early education should be: individualised to the child’s needs. This school had an IEP (individual educational plan) for every single pupil. Their philosophy is that each child will flourish and show you their best if they are allowed to learn at their own pace with challenges being offered up at appropriate stages of their learning journey. This was not a school that was aspiring to climb up league tables, offer courses that prepared children for specific exams, taught to the test kind of place. As we toured the school it was interesting that Miss H became more and more engaged and Aiden at one point just reached up and held the Headmaster’s hand. As we left the school that day Miss H told us that this school was absolutely perfect.

So now we finally have places at a school that suits both children. Miss H will be in a very small class where she will get the individual adult attention she craves. She will get the support to really stretch her wings and meet her potential. She’s excited about taking up another instrument while continuing her violin. Aiden will have a personalised support program, he will be slowly eased into the school routine, he’s got very doable and small goals set for him. A speech therapist will work closely with his class teacher to help him establish some communication. His progress will be evaluated in December to see if we need more support that can currently be offered.

So we are cautiously optimistic. Aiden has a school place for September in a small, independent, mainstream school perched on a beautiful windy cliff halfway across the world. A small battle has been won. We have got a first glimpse of real inclusive education is: where a child is not passively punished for his disability, where a child is not denied his right to education because he needs a little bit more, where a child and his family are not locked into a label, don’t have their options whittled down based on some arbitrary elusive criterion. We were able to meet people working in education who actually deserve to be called educators. For the first time in months we have a small reason to be hopeful that we might get some answers, that Aiden has a very good chance of finding the support he needs, has a very good chance of learning to communicate and have a conversation, a very good chance of learning how to interact meaningfully with his peers.

In the meantime life has become a checklist of sorts. Final reports and ITP’s, cat export licenses, pet-friendly temp accommodation, movers’ quotes and schedules, a dividing up of the detritus of 9 years in one place. It’s massively overwhelming. The only way to deal with a change on this scale is to take it one day at a time and hope to hell that you never have to do an international move with young kids and a very old cat ever again!

If you want to read up more on forest schools: forestschools.com and https://en.wikipedia.org/wiki/Forest_school_(learning_style)

Disrupted Sleep

So Aiden has always been a super bad sleeper. This was more of a challenge for us as his sister before him had always been a very good sleeper, sleeping through the night aged 8 month for 12 hours straight. She was a baby out of one of those how-to-raise-a-baby guide books. Did everything as it said in the manual so we were a bit unprepared for this unique challenge, to say the least. Mr. A, however, is a whole other ball game. When he was a tot we thought that it was the recurrent ear infections and sleep apnea caused by enlarged adenoids that was the cause of his disrupted sleep. We went through months of tag teaming, trying to comfort a bawling child, trying to make sure that his crying doesn’t wake his sister, and then getting on with the rest of our day at 6 am. I remember crying along with him out of sheer exhaustion and helplessness and marvelling at how the husband could still remain all calm and rational. I also remember one very scary morning when I was so sleepy while driving Hanna to school that I drove into a barricade. Thankfully I was only doing about 15kmh.

After his surgery, Aiden’s sleeping pattern improved but not significantly. He still went through protracted periods where he would be up two, three hours every night for weeks on end. And bizarrely he was able to function and get through his day without a hitch. We tried everything that we could find to help him sleep through the night. We kept a regular bedtime routine. We kept his room environment very low key and free of any objects that might offer any unnecessary stimulation. We kept a food diary to determine if any particular type of food was the trigger. We consulted a leading children’s doctor who helpfully told me it was all the product of my lax and bad parenting, he was  spoiled rotten brat, and I should just spank him and leave him in his room to cry himself back to sleep. He did say that the spanking comment was a joke, of course. The one thing we have not tried, and will not try, is to leave Aiden to cry it out. He is incapable of putting himself to sleep. I believe that with time he will learn this skill. I certainly do not envision myself sitting in bed with a 15 year old boy till he falls asleep. Well at least I hope I wont be.

(An aside on crying it out or the Ferber method: It works, it really does but not with every child. Hanna was sleep trained using this method at 6 months old. The whole process was smooth and went exactly as it says on the package. We tried it Aiden, it was an unmitigated disaster).

Aiden’s bedtime routine involves an attempt at reading for 3-5 minutes and then lights out, no talking, no engaging him, and I sit by him till he falls asleep. This takes from 10 to up to 30 minutes. When he wakes in the night we repeat the same: I sit by his bed till he falls asleep. His periods of disrupted sleep have become less frequent and less intense as he’s grown up. We are going through a phase these days. But thankfully it’s every other night that he invariably wakes between 1 and 2 am and then will stay up for an hour or two. He is able to wake at 7 am as usual and go and have a full day at nursery and do his therapy/after school activities without any loss of energy or fatigue. Personally I think that our bodies have become used to this pattern. After all we have had more that 4 years of practice! We no longer feel like a zombie the morning after. On the rare occasion he has stayed up till, say, 5 am we have just carried on with our day as usual.

Ever since we have started to seriously consider and internalise this autism angle I have come across lots of blogs and discussion on why disrupted sleep is so common in children who are on the spectrum. Honestly, so far I have not found an answer. It cannot be sensory stimulation because Aiden doesn’t display heightened sensitivity to sensory stimuli during his waking hours. It can’t be related to his gut flora as the food diaries we have maintained that his phases and periods of disrupted sleep are not linked to what he is eating. We have introduced pro- and pre-biotics and magnesium into his diet and while that has helped his general digestion, there has been no change in sleep pattern. What does give me hope is that his disrupted sleep patterns are both less intense and frequent. Also, hearing from other parents who have children on the high functioning part of the spectrum reporting that they saw sleep issues resolve on their own by the time their children turned 6 is very encouraging. Till then we will carry on as we have these past 4-plus years. When he sleeps through the night, like yesterday, we wake feeling like we have been given a new lease on life and a spontaneous “Wow! He slept through”.   Nights that he doesn’t, oh well, extra coffee. I think I can single-handedly keep Nespresso in business. If they have good business sense they should open a reward club for ASD families!

If you’re an ASD parent struggling with disrupted sleep you might find this useful: https://www.autismspeaks.org/family-services/health-and-wellness/sleep. If you find something out there that works for your family, well good for you, you’re luckier than us 😉

Post Script: Keep us in your thoughts next week and send good vibes our way as we head out for what can be the last leg of The Great School Hunt.

The Diversity of Autism

I had an interesting conversation with a close friend yesterday. She is someone who has known Aiden since he was born and has had the opportunity to see him on, nearly, a daily basis. She expressed a lot of surprise that Aiden is autistic, that if I had not explicitly stated it she would never had thought he is on the spectrum. We get this a lot, A LOT! Friends, family, well meaning strangers look at us like we’re slightly nuts when we mention Aiden and autism in the same sentence. I have heard statements like “Are you sure? But he looks so normal”, “No way! He’s just immature”, “He’s growing at his own pace, don’t despair, you’ll laugh at all this in a few years.”

I promised my friend yesterday that I will blog about Aiden’s autism next. So the aim of this post is to attempt to tackle the sheer diversity of development issues that make up the autism spectrum disorder. I don’t blame people for saying what they say. When you mention autism it will conjure up images of the extreme form of the disorder. You can spend a whole day with Aiden, and if your life has not been touched by autism, you will never see it. For instance:

-Aiden has a full range of facial expressions. In fact, since he has delayed speech he uses his expression somewhat exaggeratedly.

-Aiden is incredibly sensitive to people’s moods. He has a very high level of emotional intelligence, something that classically autistic children lack. If he’s pushing the boundaries he will look at people’s expression to check just how far he can go. His heart breaks when he’s scolded, especially if it’s Daddy who scolds him. Daddy needs to raise one finger for Aiden to get in line!  No words needed.

-Aiden craves physical affection. Since he was a baby he has loved to cuddle. With his people he will want a physical expression of their love, no, need this expression. From the pet cat to parents to class teacher, Aiden can happily cuddle with you very quietly, very peacefully.

-Aiden doesn’t need prompts to express socially appropriate statements. If he’s stepped out of line, he knows it and will apologise. He verbalises all his needs. He says thank you as often as can reasonably be expected from a 4 year old boy. Though much of his emerging speech is echolalia, he is employing this to express his emotions. (The other day when he was upset with me, he looks me in the eye and says: I am not talking to you! This is what Peppa Pig says to Suzy Sheep when they had a fight).

-Aiden is super easy to deal with when we travel, when we have changes in routine, when we visit new, unknown environments. He takes change in his stride and is not a slave to routine.

-Aiden doesn’t have any physical ‘stims’. Stimming is a repetitive behaviour that many autistic individuals need to soothe themselves. Some flap their arms, some rock themselves, some flick their fingers. It’s an attempt to self-calm. (I obsessively pick my cuticles when I’m upset. It helps me calm down. Somehow that is socially acceptable, disgusting as it may be, but arm flapping isn’t!).

-Aiden does not tantrum. Mind you, we would have tantrums, but the sort that any child would have. Nothing so extreme that it would draw people’s attention. We have not had to readjust our family’s life around him to prevent the possibility of a meltdown.

So after reading all this you’re wondering how Aiden falls on the autism spectrum. This is why:

-In four years, Aiden has never brought us a piece of artwork for us to smile over together, he’s never pointed at an airplane leaving a cloud trail and shared his wonder, he’s never shown us something that he’s found fascinating, interesting, some creation of his that he particularly proud of. This is called shared or joint attention. Its complete lack in Aiden is one of the biggest red flags of autism.

-Aiden’s speech is now emerging at a rapid click. But much of this is echolalia. Echolalia is when a child perfectly mimics, down to tone and inflection, something that he has heard. In Aiden’s case it’s snatches from his favourite cartoons. Sometimes listening to him speak is like watching an episode of Charlie and Lola. It leaves us in fits. Yesterday in the car he kept repeating the following dialogue for a good ten minutes:

Stop it!

I can’t stop it!

This was done in two different voices. We were all laughing, including Aiden, at  how strangely  appropriate this was.

-Aiden has so far developed no social skills with his peers. He has now got to the point where can play alongside other children. He is no longer fiercely protective of his space, he’s using other skills to let other children know not to take his toys, he’s learning to let go of a toy, share it, he is no longer lashing out at others walking into his space. While we have made this much progress, he is still most comfortable when he is on his own. Other children in his area are tolerated, at best. There is no evidence yet of him sharing his play with others.

-While Aiden indulges in a lot of pretend play, his play is very repetitive. His favourite toys are dolls and doll houses. Doors are current obsession. But he needs his dolls to be lined up just so, in perfect symmetry. They need to go into the house in a particular order. They need to sit in their camper van and go for a picnic in certain way. This obsession to order, this attention to incredibly minute detail, is very important for Aiden and any divergence from this causes him stress.

Aiden was first red flagged for autism at age 2 and half. He was immediately put into therapy to address his issues. This is absolute best possible scenario for a child with autistic tendencies: the earlier you intervene the better the outcome once a child gets to grade school. Aiden also lies on the extreme fringe of the spectrum. His technical diagnosis is high functioning, mild, pervasive development disorder-not otherwise specified (PDD-NOS). In terms of achieving a fully functional, independent existence this is the best form of autism you can have (yes, that was written with tongue planted in cheek).

Understanding PDD-NOS is very hard. You’re basically ticking just enough boxes to hang off the autism spectrum by the skin of your nails. It’s also very unhelpful that the high functioning fringe of ASD is in a state of constant flux. Initially the high  functioning end of the spectrum was divided into PDD-NOS and Asperger’s. Recently Asperger’s has been ‘discontinued’ as a distinct diagnosis. Adding to the confusion is that the Diagnostic and Statistical Manual of Mental Disorders-4th ed (DSM-IV) devotes one paragraph to PDD-NOS and basically tell you what it’s not, not what it is:

“This category should be used when there is severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism” – presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.”

Of course one can take the course that Hassan takes. When asked what PDD-NOS is he says it basically means “I have no f**king clue”. When asked what Aiden has, he says he’s got something called “Being Aiden”. PDD-NOS or Being Aiden, whatever it is, Aiden has got a family that will move mountains for him. That he will be given the best support he needs, no matter what the financial or emotional cost, is a foregone conclusion. We have no doubt that Aiden will be a fully functioning, independent, productive member of society. In fact he may go on to find the cure for the common cold or to colonise Mars or do something that changes the course of humanity. Of course we will always be protective of him, of course we will always worry about him. But what parent doesn’t? Regardless of whether your child is “typically developing” or has “special needs”. Everyday of his life Aiden has brought us nothing but joy. If we can wave a magic wand and take away his quirk, we honestly, hand-on-our-hearts, would not. Because we love him just the way he is, we celebrate his oddities and his little triumphs because they are him, we would never ever have it any other way.

If you want to know more about PDD-NOS, this is a great link: https://www.autismspeaks.org/what-autism/pdd-nos