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Stories About Autism

Jude

How do I begin to tell you about Jude? How can I try and describe what my son is like when, at seven years old, he is the most complex person I’ve ever known.

As I sit here writing this it’s gone midnight and he’s just fallen asleep. This is good in our world, sleep is not something that has ever come easy for Jude. Anything before midnight is a win for us, and then we just pray it lasts more than 5 hours.

I’ve had the best day with him today, possibly one of the best I’ve ever had with him. Days like this fill my head with positive, ambitious, life is going to be great, thoughts. Yet if I’d attempted to write this 2 days ago I might have been feeling quite different. If you saw him 2 days ago you would never believe you were looking at the same boy. Today he had the biggest smile on his face all day. He went on a train, went for a walk along the river, spent time with family, and was happy and engaged all day. For most of this week, he’s been the complete opposite; anxious, angry, extremely impatient and exploding into bouts of self-harming with no warning. It’s almost as if there are 2 different boys in there. But there’s not, it’s just Jude and the battles he has with his autism.

Jude HospitalLooking back, life with Jude was never going to be easy. When my wife was 5 months pregnant we were told that there was a high risk our baby would be born prematurely. Instead of being able to enjoy the last 4 months of pregnancy we had that nagging fear that he would arrive too soon. After constant hospital visits, Jude arrived 7 weeks early, and initially all seemed well. Then 24 hours after his birth he was rushed into intensive care, where he would remain for the next week. Those first few days were, I thought at the time, the toughest I’d ever experience. The fragility of life was never more apparent when one of the other babies in Jude’s unit passed away. Luckily for us Jude became stronger, and by 10 days old we were able to bring him home.

When Jude was around 9 months old my wife first told me of her concerns about his development. He gave very little eye contact, hardly ever responded to his name, and could often appear like he was in another world. I have to admit it took me a while to see what she saw. I guess I just hoped that it was to do with him being so premature, that it was temporary and that he would soon catch up.

Our first visit to the doctors seemed to back up my beliefs as we were pretty much told we were being paranoid and everything would be ok. My wife didn’t care much for that doctor’s opinion, and trips to various doctors and consultants followed. By the time Jude was 18 months old, we would have a diagnosis. Jude was autistic.

Since that day Jude has provided us with a crash course into the world of autism, as we desperately try to understand what is going on inside his head. He is 7 years old now and, as yet, has been unable to say a single word to us. It doesn’t seem true that after seven years we are still waiting for Jude to talk to us. I hear his voice in my dreams as I imagine the conversations we’ve never had. It’s one of the many small things you take for granted in life, the ability to communicate with others, one I never realised could make life so difficult.

Despite having no words, life with Jude is far from quiet. He is constantly vocalising, it’s just the sounds he makes are unlike any words that you or I would know. It’s like he has his own language; a language that he truly understands, but the rest of the world doesn’t. Sometimes I can see that he is really trying to communicate, and he looks at me shocked that I don’t know what it is he’s trying to tell me. Somewhere in the connection between his brain, vocal chords and tongue, there is something that isn’t working properly.

Instead, I’ve learnt to become a detective to the tone of his sounds. I can tell with each noise he makes how happy he is, if he is trying to communicate with me, jabbering away to himself, or if a meltdown is on the way. His understanding of language, when we are talking to him, has improved significantly, able to follow various instructions when he chooses to. However, his frustrations at not being able to relay his own thoughts are clear to see. Over the last 4 years these frustrations have gradually become more and more physical.

Jude self-harms on a regular basis. When you say it out loud it doesn’t sound right. Seven-year-olds aren’t supposed to self-harm; depressed teenagers who carve their skin with knives hiding away in their bedroom are the people who self-harm, right? What began as dropping to his knees when he was upset has progressed to full on violence that even now can shock me when it happens. Watching him punch himself in the face, slam the back of his hands against radiators, and jump onto his knees from a height is not an easy thing to witness. It can last for anywhere between 30 seconds to a full hour, and happen once a day, to pretty much on and off all day long.

Seeing this beautiful, happy boy switch into this almost possessed like state on a daily basis has taken a lot of getting used to. I’m continuously searching for answers, a better understanding, of what makes him think punching himself in the face will fix his problems (whatever they are). But for now, it is one of the ways he deals with the confusing, overwhelming world he lives in, and something we do everything we can to help him with.

Jude trampolineJude is lean and athletic, full of energy, and ever since he was able to walk he has never been still for long. This can have it’s challenges. Food is eaten on the go rather than sitting at the table, which makes for a messy house at times. Concentration on any tasks for longer than a few seconds can be difficult, sitting at a desk even more so. Even when he is watching tv he may be still for a minute or two, but then he is up bouncing all over the sofa, and running around from room to room. He has never shown any interest in toys, always preferring physical activity. Jude is at his happiest when he is running, jumping, swinging and bouncing. He has always sought out rough play, squeezes, tickles, and being thrown around.

Jude seems to have a natural ability for trampolining, honed from the years of bouncing on sofas and beds. Somehow he has developed moves and routines without ever being taught or shown them. On the rare occasion that he gets to use an actual trampoline it’s a joy to behold.  He appears confident when he’s on there, he seems at one with his body, and in complete control of his world. Seeing him so happy makes everything worthwhile.

Jude has always had a love affair with 2 tv programmes, and 2 tv programmes only. Mickey Mouse Clubhouse, and Special Agent Oso. They are all he has watched since about 2 years old, and despite repeated efforts, they are still all he will watch. I think it’s partly to do with the comfortability, the knowing what will happen next, as each of these cartoons have the same structure to each episode. Strangely, for the last couple of years it seems that one of them will be the favourite, and he refuses to watch the other. Then suddenly he will switch one day, and the reverse is true. Certain episodes will also be in favour, repeatedly watching the same 4 or 5 over and over for as long as he can, getting upset when others are put on. I’m sure I could enter mastermind and have them as my specialist subject. I would be seen as a genius, albeit a weird one due to the choice of my favourite topic.

When he watches tv he is usually bouncing around in front of it, tapping on the screen, following the action with his hands. He taps continuously, increasing in strength as he becomes more excited. I’m surprised how resilient flatscreen tv’s are as so far he’s only managed to break one. I’m sure the tests they’re put through never envisioned an autistic child hammering away at it with his hands whenever he gets the chance.

Jude has attended a special need school for the last 3 years, and it has been a really tough experience for him. The school itself is great. We chose it because we fell in love with the staff we met, moved by their passion and dedication to working with the children they teach. They do everything they can to try and meet Jude’s needs, and the love they have for him is clear to see. The difficulty for Jude is he currently has no interest in being around other children. They are everything he doesn’t like about life. They are loud and unpredictable.

Since he was 1 we’ve had to give birthday parties a miss as he’d meltdown within minutes of walking through the door. If other children would come to visit us at the house he’d try his hardest to avoid whichever room they were in, even sitting on top of the sofa to avoid little ones crawling around.

IMG_0495Being extremely noise sensitive, Jude spends much of his day with his fingers covering his ears, trying to regulate all of the sounds going off in his head. At a special needs school, unpredictability and noise go hand in hand, so he is surrounded by it all day long. Some days he is able to cope, and genuinely has good days at school. Others are really difficult, and he comes home covered in bruises, a stark indicator that he has taken it out on himself that day.

Whilst he loves interacting with adults, he makes no attempt to do so with any other children.This is made all the more difficult at home as he shares a house with his younger brother who is also autistic. In Jude’s head he was meant to be an only child, given undivided attention from both parents whenever he needs it. He has no interest in his younger brother at all, and from his point of view I can’t blame him. Tommy is extremely loud and unpredictable, everything that Jude hates about school, which he then has to deal with at home too. He’s been a part of Jude’s life for 4 years now, and I could count on one hand the number of times there’s been any meaningful interaction between them.

IMG_0082One myth that I’ve seen constantly thrown around about people with autism is their inability to show affection and love. Jude smashes that myth into a million pieces. He is the most affectionate, love seeking child I have ever met. It hasn’t always been that way.

At an early age there was a complete lack of eye contact, and a real uncomfortableness at physical contact. Jude would never hold our hand, and pull away seconds after any attempt to cuddle. There was a clear barrier between his world and our world, one that we desperately wanted to break. After time, and a lot of hard work, gradually his eye contact began to increase. Looking into our eyes stopped being such a scary, uncomfortable task, and instead helped him strengthen his bond with others. As this gradually improved the trust he placed in us did too. Suddenly he would take our hand willingly, and hold onto it knowing we are there to help him and keep him safe. This increased trust has allowed him to fully experience the love we have for him, and for him to realise what a wonderful feeling that is. Now, when Jude is happy he is engaging, affectionate, always seeking love and interaction.

Jude is very selective in who he shares these feelings with, as not everyone is able to bring this out in him. He clearly has his favourites, and has an innate ability to know when people feel uncomfortable around him. Whenever friends or family are around who don’t really know how to be with him, and are maybe a bit guarded, he avoids them like the plague. He recoils when they try to show him affection, and quickly wants away from them. We’ve always likened it to when people say a dog can sense that you’re nervous and then plays up around that person. It’s like his sixth sense, maybe heightened because of his inability to communicate verbally with people, he takes one look at them and decides whether he like them or not. I used to think it might just be familiarity with certain people, but I’ve since seen him respond positively to people meeting him for the first time. They tend to be gentle, relaxed, and open enough to let him lead the way, rather than trying to force interaction with him.

Life for Jude right now is completely unpredictable from one day to the next. There seems to be no middle ground for him at the moment. He only knows how to be extremely happy and relaxed, or anxious, upset and violent towards himself. These swings can occur in seconds, or can last for days, good or bad. Trying to help him self-regulate is our biggest challenge, and one we’ll give everything to be able to meet. When he’s happy he’s so much more receptive to the outside world, we just need to help him be like that more often

8 comments

  1. Nadia - August 17, 2015 7:08 pm

    I hope you have a trampoline in your backyard? 🙂

    Reply
    • James Hunt - August 17, 2015 10:09 pm

      We did used to a couple of years ago, became too much of an obsession and more trouble than it was worth. Though I think it’s time we re-introduce it 🙂

      Reply
  2. Liz (nana). - August 18, 2015 8:14 pm

    Reading your latest blog made everything come out plainly. What an enormous challenge you have but how rewarding it seems as you break into the “world of Jude” I feel that you are making great breakthroughs,even if it seems endless and slow. I think you are about to be recognised as a very Intuative and authority on the unlocking of the shut world of autism. James I so admire you!

    Reply
    • James Hunt - August 19, 2015 12:41 am

      Thanks Liz. You’re right at times it does seem endless and slow, but hopefully we are making some breakthroughs and unlocking his world piece by piece

      Reply
  3. isa - September 4, 2016 8:51 pm

    Thanks for sharing your story. What do you think about medication? My son is 11 and medicated. It helps, but its definitly not a solution for his self regulation problems.

    Reply
    • James Hunt - October 10, 2016 10:21 am

      Jude has been on medication for a year now, a very small dose of risperidone. And, I think it has made a big difference. It has certainly helped with his sleep patterns, which also improves his moods. There was a spell a few months ago where I thought it wasn’t doing anything as he seemed to regress back to violent behaviours, but it seems much more under control now. You’re right it’s not a total solution, but it helps. When Jude is calmer and less anxious he is so much more open to learning, and just the world in general. What are your son’s challenges?

      Reply
  4. Kay - October 9, 2016 9:06 pm

    James, Jude sounds incredible, and I love to hear about how affectionate he is, my three year old has just started giving us kisses but that took a long time! I wanted to ask, did Jude ever have any words?

    Reply
    • James Hunt - October 10, 2016 10:12 am

      Hi Kay. Thank you, he certainly is incredible. I don’t think he’s ever had any clear words. He made sounds that we thought were getting close to words, e.g da-da-da-da-da for Dad, but they haven’t progressed past that stage as yet. He also makes these sounds happily to himself, so we’re not really sure if they are just sounds he likes, or attempts to say a word. My main goal is juts to find the best way for him to communicate, whatever that may be. What he lacks verbally he makes up for in affection 🙂

      Reply

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