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…

IMG_1695

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.

IMG_1833 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:

IMG_1510And 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.

IMG_1834

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.

IMG_1741(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.517gFJP8Q5L._SY344_BO1,204,203,200_

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 Isolation of Hidden Disability

Lately I have found myself doing very angry things: writing angry emails to the school, waking at 2 am and indulging in a fit of righteous indignation that lasts till morning, crying very angry tears, in short becoming a miserable ball of tightly wound anger. Basically I have found myself becoming a person I have always disliked: someone who is full of their own misery and can talk/think about nothing but miserable stuff. Meh! Bleh!

See, I am angry because almost everyday I am faced with situations that are so frustratingly unfair. Tomorrow Little Miss H performs a violin solo at her school’s harvest concert. I am bursting with pride for my six year old who is doing her second solo recital on one of the trickiest of instruments. But I am feeling gutted at the same time. I want to go and watch my girl perform but I am so worried about how Aiden will handle a concert. There is every possibility that the darkened theater, the acoustics, the excitement of seeing Hanna on stage will prove to be too much. He may start loud verbal stimming, he may start lashing out, he might end up disrupting the performance that young children have worked hard on preparing. And I wouldn’t be surprised if parents glare and hiss at me a la the mum who took her autistic child to watch King and I. And, no, I don’t expect that the Headmaster will launch a social media campaign in my support 😉

What makes me angry is how hidden Aiden’s disability is. If a child has a physical disability then many accommodations are made for them. A child in a wheel chair, for example, would be able to access tomorrow’s concert with ease. A child with a profound intellectual disability will have respite services offered to their parent so that they could go to see the other child’s recital. A child who is marginal, neither here nor there, like Aiden, he and his family are the most isolated and resourceless of people. He cannot go to a special school because he ticks none of the boxes for a profound learning/cognitive/sensory/speech disability. He can only attend a mainstream school for a limited amount of time each day as the demands of a structured classroom  are beyond his development stage. The worst catch is that he only gets access to more support if the school can prove that, despite their best endeavours, they cannot prove that Aiden is making any progress. So my choice is either to watch my 4 year old boy struggle with conforming to school’s demand or hope that he utterly and completely fails compared to his peers. So, do you see now why I am so effing ANGRY?

What makes me angry is how my boy is autistic enough to act out in public, on occasion and usually without any precedence or warning, yet majority of the people observing this behaviour put it down to him being ill mannered and/or badly parented. Aiden’s needs have made a lot of friends drop us as well as leading us to drop a lot of friends/family. We are lucky as we have a very solid core of friends and family who are our rocks. Their constant support, advice, unfailing good cheer, and belief in Aiden gives us so much strength. There is then a second group: who look at Aiden and secretly thank fate that this is not their life’s challenge. Then there is a third group who think that Aiden is the way he is because he is spoilt, we are lax parents who never set limits, let him have too much access to the iPad, etc. So in a way our challenges on Aiden’s journey have given us a pretty profound insight into people’s personalities.

One thing that I can promise you every parent like us hopes for is that their child will grow out of the worst of their challenges. That the the worst of their autistic traits are a development delay and with time, they will catch up. Because there is nothing else to hope for really. The children with hidden disabilities, non-profound learning needs, and high functioning conditions are straddling the fence, spending their formative years in a no-man’s land. I was reflecting the other day that probably since he was 2 years old, I have always analysed everything Aiden has done with the autism angle, since he had been put on the high risk watch list. Everything he does, like shoving a small toy up his nose, I question: is this ‘normal’ behaviour or another autistic red flag? And it’s not just me, every parent of a atypically developing child will echo my thoughts.

So, we will go to the concert tomorrow. Prepared for the worst, we will sit near the exit in case we need to beat a hasty retreat. All the time I will hold on to the small hope that he will calmly sit on my lap and enjoy the music and be happy to see his sister on stage without becoming disruptively excited. And tonight I will lose sleep over this worry and indulge in anger over the unfairness of the worry.

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. Autism_Awareness_Ribbon

To Whom It May Concern: We Aren’t In Denial

IMG_0523Ever since Aiden’s problems and communication delays began to become apparent, around age 2, we very often got sympathetic advice from well meaning individuals. We went through various stages of bafflement, serious worry, seething anger, helpless tears, and finally resigned laughter over said advice. It usually takes on the same note: Aiden is effectively broken and defected as a human being and you need to work very hard to fix him and be prepared for the eventuality that he’ll be needing constant care for the rest of his days.

In shrugging off this advice one may wonder if the title of my post is in jest, that we are in actual denial. However, having lived this journey with Aiden for over four years and across two continents now, I can safely assure everyone who may be concerned: rest easy, we are not in denial. We have a very good idea of Aiden’s abilities and the challenges he faces. Given the resources and knowledge available to us we have provided him with the best learning environments and the most up to date therapy techniques.

We acknowledge and embrace the reality of Aiden: he has next to no eye contact, he can only speak in very basic two-four word sentences, he cannot form friendships with his peers but can form relations with those older than him. He is intellectually very able and thankfully doesn’t have the more debilitating of the autistic behaviours like extreme rigidity, sensory challenges, a propensity to tantrums etc.

While acknowledging Aiden’s said ‘shortcomings’, we also refuse to believe that he is ‘defected’ or ‘broken’ and needs ‘fixing’. Now here comes the denial part and our somewhat controversial approach. See, the Mr and I are of the opinion that autism is not a disease that needs to be cured. So all the journeys, metaphorical and physical, that we have taken with Aiden have not been to find the ‘cure’ to his autism but rather to help him deal with the frustrations he experiences almost daily when his limited expressive ability cannot keep up with his very bright mind. Aiden, in our opinion, is not disabled but differently abled. His autism is what makes him, not what breaks him.

For people who have not been very close to a differently abled person understanding this is very difficult and I guess when they see what might be to them a flippant attitude towards very obvious difficulties, the rational reaction is to assume that the parents are in denial. This is a frustration that I am sure,  a number of families feel when it comes to their loved ones who have something, a special need, that sets the individual apart.

We don’t think that Aiden will ‘grow out’ of his challenges. We just hope that with the right support he will be able to make the most of his very obvious abilities and learn ways to cope with his challenges. We also do not believe that Aiden will need the life-long care that some fear he may. Again, not looking through rose tinted glasses here but being brutally rational: one in 68 child these days is being diagnosed with autism. Society cannot afford the burden on keeping these many people out of the work force. Work places will therefore need to adapt to make it easier for autistic individuals to hold down regular jobs. This isn’t utopian, just a practical deduction.

So yeah, just in case you were wondering, we aren’t in denial. Just not as beat up about our boy’s future are some might think we should be.