News just in! Madmummy is not mad! Well she is; she’s ruddy mental. But after years of trying to work out what she was doing wrong, and all the doubts and fears about the Hulk’s strange alternative ways, she has finally been given some answers. Jabbermonkey was such a chatty, joyous boy. Therefore she had always thought that the Hulk’s rages were simply standard toddler behaviour. That her and hubbykins had been spoilt with Jabbermonkey and that the Hulk was just a typical kid: wild, contrary….nuts. Perhaps deep down she had always known that there was something a miss, but she subconsciously shook off the nagging thought that things were not quite right. If you have read her previous posts you may already have an insight into the Hulk’s behaviour and Madmummy’s subsequent attempt to manage it. But here is a not-so-brief lowdown:
The Hulk age 0-5
Birth: The Hulk was born two weeks late, weighing a healthy 8lbs 7oz. He had been regularly scanned and measured throughout the pregnancy on account of Jabbermonkey’s low birth weight and Madmummy had been assured that he was a healthy size with “a big head and broad shoulders (perhaps a little more information than she needed). The birth was natural and fairly incident-free, apart from when Madmummy overdosed on gas&air and passed out during the pushing phase. She then proceeded to have a drug induced dream about Stephen Fry, who was divulging the meaning of life (she watched may too much QI in her third trimester). She remembers waking, wide eyed, and gasping “you will not believe what I’ve just seen, I know the truth about everything!” To which the midwife kindly uttered “That’s nice, but can you PUSH please!”
0-6 months: The Hulk appeared to be a normal, albeit hungry baby (and Madmummy would know as she had to breastfeed him every 3 hours day and night for 6 months! *pant* *hugs boobs*
6-12 months: The Hulk was weaned off Madmummy, so that she could once again have a life outside of being a human cow. He slumped a lot when sitting up and loved to sit in his walker watching the DVD screensaver -mesmerised by the way the letters bounced back and forward and changed colour. He was not talking in words but could say say “dagga dagga”. But that was actually a relief for Madmummy because, at the age of 3, Jabbermonkey would not shut up.
12-18 months Madmummy was a tad concerned that the Hulk was not yet walking or standing (as by 12 months Jabbermonkey was off) but she knew that she shouldn’t compare. He didn’t crawl, but instead rolled to where he wanted to get too. His idea of playing with toys was to chew them, throw them or bash them together. Whenever he was in the pushchair his legs stuck rigidly out in front, making it difficult for Madmummy to turn around the isle in the supermarket.
18 months – 2 years Around this time some family members had started to voice their concern that he was a bit… unusual. One family member suggested he looked like he was having petty-mal seizures as he stared into space a lot, another felt that he seemed to have no core strength and others noticed that he would never hold Madmummy around the neck when being carried, but would become completely limp (like he was trying to break her). Still not talking, but eating plenty, it was getting exceedingly difficult to carry the heavy lump around. So, Madmummy and the family decided to give the Hulk a kick up the bum (figuratively speaking) and get him walking. A whole evening was spent at his nanny’s house, where the entire family took it in turns to stand him on his feet, aim him at another family member and let him run clumsily to them. It worked and by 20 months he was walking unaided…..and then the fun started
- 2 years- 3 years: Are you sitting comfortably? Here goes…*takes a breath*.
The combination of being a tall child and being able to walk, enabled the Hulk to access dangerous or precious new things. Combined with his total disregard and dislike of the word “no”, his ability to reach and destroy everything he touched changed the goalposts entirely. Madmummy had to move everything out of reach. He also had become almost un-humanly strong; Madmummy recalls the morning that she was surprised to be woken by him, standing by her bedside. Thinking he must have climbed out of his cot, she was most perturbed to discover his cot utterly demolished – the bars laying splintered on the floor! This was the first proper Hulk-smash moment (there were to be many others).
By two years old he was being seen by a speech therapist and Madmummy was trying to implement a programme of positive reinforcement and language development techniques. She gave up her career (which she couldn’t possibly balance with the needs of her family) and spent her days playing with the Hulk and repeatedly saying “Can you say…. ? Say…. Please say….. ” To no avail.
Madmummy and Hubbykins attended a Makaton training course in order to learn an alternative way to communicate with the Hulk (who at this point could only say “dagaga” and “NOOOO!!”) Madmummy was also given a number of PEC (picture exchange communication) cards by the speech therapist to help the Hulk express his desires. Unfortunately, he had developed both an obsession with posting things and an ability to climb onto the kitchen worktop. Thus, he had toasted most of the laminated cards within a month (Madmummy can still smell the burning plastic). Too embarrassed to ask for more, madmummy re-created her own cards with her crude illustrations and found they did help her understand what he wanted to eat (the “yoghurt” card got worn out within a week!). At this point he only really ate yoghurts, grapes and cream cheese on crackers (square crackers they must be square!!)
Apart from being quite a picky eater he developed a number of unpleasant behaviours. These were often put down to his speech delay and subsequent frustration, but Madmummy had started to think his obsessions, temper tantrums and strange sensory responses suggested another underlying issue. By the time he was 3 he was regularly doing such things as:
1) refusing to hold mummy’s hand when out. 2) scratching.
3) screaming 4) hitting 5) collapsing in the middle of the carpark when mum insisted that she hold his hand
6) Pulling her hair out when she then had to fling him over her shoulder and carry him to the car 7) screaming. kicking, thrashing and bending backwards when she tried to put him in the car
8) scream bloody murder all the way home until Madmummy went….well MAD!!
- 3-4 years: If you thought the terrible 2s was bad…
By this time the Hulk was attending Pre-school two afternoons per week and Madmummy had warned the staff that he had delayed speech and some “behavioural issues”.
The speech therapist had already refered him to the CAHMS (Children and Adult Mental Health Service) who had begun to discuss his case, but were not overly concerned. Although the staff at the pre-school admitted he was behind in many areas, it seemed that he always behaved fine when he was with them (REALLY!!! WHAT!!) So, while he was totally off the wall batty at home, he was totally chilled and calm at the pre-school and Madmummy really did think she was just going Mad. However, she could not ignore nor cope with his increasingly difficult behaviour, which now included but were not limited to:
1) Licking windows
2) Throwing things
3) Shaking his head and arms erratically when excited
4) Being obsessed with TV
5) Having massive tantrums because she had parked in a different place than usual or taken a different route to school.
6) Refusing to get dressed without a fight.
7) Refusing to eat without a fight.
8) Refusing to do anything without a fight.
9) Insisting on taking a watering can full of heavy bowl balls to pre-school
10) Hitting, scratching, biting,running off, collapsing on the floor and screaming (you know the usual day to day stuff)
So, at Hubbykin’s suggestion, she had begun to keep a diary of the Hulk’s daily tantrums. Madmummy hated doing it- talking about all the horrors and bad things- but knew she needed to keep an account of what was happening. The record included what happened before the tantrum, what he did, how Madmummy dealt with it and what the Hulk was like afterwards. For example:
- The Hulk was hugging a tree at his uncles wedding.
- The Hulk refused to stop hugging the tree when it was time to have his photo taken.
- The Hulk was carried from the tree kicking a screaming after shouting “no” at daddy and refusing to let go.
- Hubykins was not able to be present for the photo as he had to hold him out of shot to stop him rolling on the muddy ground in his new suite in front of all the wedding guest. The Hulk continued to scream and cratch hubbykins, while Madmummy tried to smile convincingly for the camera.
- Later he broke a glass, had a tantrum over dinner and, subsequently, Madmummy took him back to the hotel room for much of her brother’s wedding reception.
At first she could see no point with writing the 60 page long document of negativity, but she later realised that it did help give her an insight into the Hulk’s mind. She could see patterns, causes and effects. Prior to this she had rarely known the reason for his meltdowns, which was the worst part of it. Now she was beginning to understand…obsessions, sensory stimulation and a deep frustration towards a world he couldn’t fully understand or engage with. The wedding was a prime example of a time where nothing was routine and the people and the place was unfamiliar. Although he may have smiled and looked excited, he was anxious about what to expect and over stimulated in every capacity (the wind, the feel of the tree bark and the hundreds of faces.) Hubbykins was almost certain what the issue was, but Madmummy just couldn’t quite believe it. Surely some health visitor or medical professional would have picked it up?
But she decided to exert herself, and so she handed her report to the GP and begged that she send it to the CAHMS team to aid their investigations. Surely her comprehensive account of day to day life would be far more valuable in making a thorough assessment, than just 1 afternoon a week watching him with a load of other kids at pre-school.
Months went by and nothing was offered to assess or support the Hulk, apart from the speech therapist who was apparently pleased with his progress. Madmummy had given up working completely at this point, and dedicated her time (whenever the Hulk was not at pre-school) to taking him to play groups, attending music and dance classes and giving him constant positive re-enforcement. During this time she was also arranging a house move and job search (see previous blog entry) and upping her long and arduous attempt to potty train the Hulk.
Gradually his behaviour improved, either that or Madmummy learned to live with it and better preempt the meltdowns. She had felt quite apprehensive about how he would cope with their house move, but he wasn’t too bad. A week before she officially moved she received a letter from the CAHMS team to say they would not be assessing the Hulk and had no cause for concern at this time.
Having moved, Madmummy was referred to a different health visitor and speech therapist and the Hulk began going to a childminder full time. To Madmummy’s astonishment the Speech therapist arranged a sensory support session for her and Hubbykins, created a development plan for the childminder and booked the Hulk in for a Multi-agency assessment!
- 4-5 years: Finally some clarity!!
During the next year the Hulk behaved well at his childminders, where he benefited from playing with only a small group of children and having large amounts of 1 to 1 time with the highly trained and patient lady who looked after him. As always, he had difficulties adjusting to the new routine, but after a while he came to see her as a rigidly set part of his daily life. This proved a challenge on weekends and holidays, prior to which a routine-change talk was needed (with plenty of crudely-drawn sketches to aid his understanding).
Around this time he developed a new obsession…numbers. He learnt to count to 20 and recognise other numbers too. And so he counted…repeatedly. It was great to see he had a strength (much of which he gained from repeatedly watching Youtube videos on the subject). The trouble was he would insist, as he did with much of his communication, that Madmummy acknowledged her understanding by repeating it back. “1, mummy one!!” he would say, pointing to a house number. If Madmummy didn’t say “yes, one, good boy, that’s right” he would repeat it more and more loudly!! She can remember a time when he was screaming blue-murder at him at ASDA because she had failed to understand and acknowledge that he had seen the number 23 above the dairy isle.
During the course of the year his speech did improve a fair bit. However, Madmummy could no longer deny that his ability to communicate was not great. What made her more concerned was hearing younger children speaking so eloquently and clearly in comparison. He was on the cusp of being able to be understood- he had his own thoughts and wanted badly to be heard-but even his Madmummy was often at a loss to what he was trying to say (especially out of context). She can still feel the vibrations in her bones when she thinks of all the times he had screamed at her in the car, after having repeated himself several times (each time getting louder and more inaudible). But without knowing what he was seeing or what was going on in his mind, she just didnt know what he was getting at.
She recalls one particular occasion where she, the Hulk and Jabbermonkey were heading off to collect Hubbykins from work. They were going for a week away on the Isle of White. The cases were packed and a cuddly toy or two were in the back seat with the boys. Madmummy had enlisted Hubbykins’ brother to dog sit during their holiday. But, as they reversed off the drive, the Hulk began shouting something. It sounded like “NOOO oooiir, Mrooo dtraaa-ooooo” and everytime Madmummy guessed incorrectly he would shout loader “NOOOOO MOOOARAAATTROORER!!!” Until eventually the car was filled with screams both from the Hulk and Madmummy. Thrashing and kicking he continued to bellow a phrase she could not decipher and she continued guessing. “What is wrong? More what?…more…toys?!! You want more toys?” Madmummy had thought that, like may children, he may have wanted mummy to bring more than a couple of teddies on holiday, So she calmly explained that it would not be possible to go back, as they had to pick up daddy and get to a hotel before dinnertime. His response to this was to scream “NOOO” ever more loudly, apoplectic with anger and refusing to allow mummy to explain that one teddy was enough. He shouted back every time and she thought he was just angry for not getting his way.
She wont lie…eventually she began to scream back and he began to wail uncontrollably. Having arrived to collect Hubbykins, she clambered out of the car, shaking from the audible and emotional battle, half deaf and almost delirious with confusion and frustration. What the hell was he on about!! She looked at his tear soaked face and, suddenly, a lightbulb clicked. Suddenly, she remembered that this was no ordinary boy with ordinary wants and needs. An image popped in her mind of the porch door. In her rush to leave she had not closed it properly ane it has swung open. The inner door was closed and their uncle was inside, so she had not bothered to go back and close it.
“Oh, more door!?” she calmy said to the Hulk, to which his eyes opened and his sweet sad voice said “yes”. So, she called Uncle J and asked him to close the front door. On hearing this
Which brings us onto another little habit that he picked up after he turned 4. One day he discovered that by kicking the handle on Madmummy’s car door he could open the window and thus let in the gloriously stimulating wind he loved so much. Madmummy can remember how may times he would stand in the garden shaking his arms and head in excitement, as the wind battered him. The promise of such stimulation was cause enough to ignore mummy’s requests not to open the window, no matter how fervently she insisted. To exhasabate this new obsession further, he delighted in the sight of flying objects. Kites, planes, balloons and even a floating carrier bag would full him with joy. Therefore, he would revel in throwing out anything he could reach with total disregard for other road users. Indeed, he had once thrown out a cuddly toy rabbit (that Hubbykins had bought for Madmummy and subsequently had been added in to the children’s massive stuffed toy collection). Having told him repeatedly to close the window and not pop the rabbit’s head out of it, she had been devastated to find, on reaching her destination, that the Hulk had released her bunny somewhere between junction 5 and 3 of the M6!! Suffice to say Madmummy has now had the handles removed from her car doors and window-winding is no longer an option.
Instead the Hulk has sought other stimuli, such as the hand-dryer in public toilets. Yes, many a family birthday meal has seen Madmummy return to and from the loo several times, for many extended visits, while the Hulk enjoys the thrill of the noise and wind simulator!
The Hulk continued to grow in length and weight but still considered himself a baby most of the time. Especially when going to bed, when he would insist mummy carry him, or when it was time to get dressed. Both times he would go entirely limp but, while he resembled a dead-weighted calf at bedtime, he was more like a clumsy octopus when dressing him. And if he didn’t want to get dressed?….well lets just say the pin-down on the floor approach was sometimes required.
Food remained another obsession of the Hulk. Perhaps it goes hand in hand with the interest in anything with a hinge (ie: cupboard and fridge doors). He is able to clamber up to every cupboard and many tantrums have developed from his mean mummy’s refusal to allow him to eat a seventh banana in the same hour or an entire punnet of grapes in one sitting. It might seem to some to be wrong to deny a growing child food, but Madmummy knows his desires are not from hunger, but purely a means of control and comfort. Like a baby with a dummy, he enjoys having the comfort and stimulation of eating (often preferring crispy foods like crackers or tart food like blueberries). Often, it is not even about enjoying food, having a sweet tooth or being a hungry little boy…to the Hulk, food gives him control. One of the first things Madmummy learnt through the speech therapist was how to use Makaton to sign different foods, (indeed, she had to ask specifically for the sign for crackers and cream cheese, which was the only savoury food he would eat). His first PEC cards were not of games or activities but food – grapes, oranges, yoghurt etc. It’s the one thing he could either DO for himself (ie: climb up, grab and chew) or request mummy get him (even if all he did was point and sign please). Many a
Entire boxes of cheerios have been munched away, several pots of yoghurts and dozens of satsumas, all between breakfast and lunch. Other explanations for his constant binging are boredom and attention seeking (he grazes most when mummy is busy). So, he can be deterred if distracted by a trip to the park or the, dare she say it, the Ipad….
The iPad is now the primary obsession. What the Hulk lacks in communication and social skills he makes up for in his keen ability to understand and use technology. Since his birth Madmummy is ashamed to say she fell onto the smartphone bandwagon and, initially, felt no shame in letting the Hulk play educational apps or child-appropriate You-tube videos. But, like with food, it became an obsession. His love of the control, of the predictive cause and effect, of the sensory stimulation (the colours, songs and the pushing of buttons) causes him to forget the rest of the world.
He may love Madmummy very much, but he forgets this when she demands her phone/ipad back and will yell and physically lash out in anger. During the course of the year Madmummy has developed a reward system based on him getting to use the Ipad once per week, on weekends only. (he must obtain 20 stars on his good boy chart). When he does have access to his beloved iPad he spends much of his time watching YouTube videos that repeat number or letter songs (more recently he has been watching videos of people playing with Pawpatrol toys or Disney Princess dolls.) He also uses Madmummys phone to likes take photos… THOUSANDS of photos. Some are quite artistic. Madmummy has to spend several minutes per day deleting the hundreds of photos of the floor or the Hulk’s knee.
TV has often posed a similar issue and is banned during the week. It started when he used to obsessively watch the Twirlywoos when aged 2. At the age of 4 he discovered MickyMouse clubhouse, and watched endless episodes back to back. He also revels in dancing and singing to the Disney music such as Frozen and Moana.
So, half way through the year they had gotten into a routine, a status quo (if there is such as thing), where the Hulk’s behaviour was manageable (most of the time). It then came time for him to attend his Multi-agency assessment group, known as “Feel Good Friday.” Hubbykins kindly agreed to take the Hulk each Friday afternoon (as she was now kinda busy at work, helping 10 years olds prepare for their SATS tests.) She was pleased that she would soon have some sort of definitive answer. It is worth pointing out that until this point she was wary of saying what she and Hubbykins suspected. For what did she know? She wasn’t an expert and she was convinced that the professionals would have said if there was cause for concern. But she was still struggling at times. She also had to admit, that she dreaded being told “there’s nothing wrong with him, this is what kids are like, it’s not him…It’s YOU!” So, on the week before the final meeting, Hubbykins returned from the penultimate session and calmly sat her down and explained that the professionals in the Multi-Agency group had completed their assessment and wanted me to know the findings a week prior to the final meeting…to allow time for the news to sink in. Their finding were thus:
The Hulk has….”Autism and associated learning difficulties”.
Hubbykins asked Madmummy if she was okay, expecting her to be devastated, and explaining that the group wanted to give her time to accept the diagnosis. They would then be able to answer any questions, once she had stopped crying. But her feeling were far from sadness or disappointment. For she had secretly dreamt of the moment when she would be given a definitive answer. In her daydreams she had sobbed in pure relief at being told that she wasn’t weak and feeble – failing to manage a typical wilful boy. In reality, she remained dry–eyed and outwardly pleased to have professionals agree with their suspicions. Inside, it felt that she had been pulled out of the dark! After three years of confusion, uncertainty and second guessing how she was dealing with the Hulk, hearing the official diagnosis felt like a weight had been lifted. She wasn’t mad! He was…well “different from average kids”!
Best of all she knew she would have renewed confidence going out with the Hulk in public. She had always felt apprehension, knowing that his behaviour might bring looks and comments from others and she would have only be able to utter weakly in response: “he might have autism, we are looking into it”. But now she could say it with confident assertiveness to anyone who did decide to voice their opinion on her son’s temper tantrums and screaming hissy fits.
In actual fact this had happened only once before. Waiting at a Costa’s toilet, one day, the Hulk had tried to grab the handle, while the toilet was in use. When Madmummy had said “no” the Hulk had screamed and collapsed (he needed a wee/he really wanted to open the door). An elderly man, who was also waiting in the line, then shushed him, so angrily, that he burst into tears in terror. If only she could have said “thanks a lot for making my autistic 4 year old cry…there’s my chatty 6 year old, why not smack him for talking too much”.
- 5 years – Educating the Hulk
As well as praising Madmummy and Hubbykins for their preemptive support and work with the Hulk, the Multi-agency assessment group explained that he had what was know as “Fizzy-pop autism”. So, with the diagnosis confirmed Madmummy could finally justify all the extra adjustments she had put in place over the years. Moreover, she could inform his new school of his issues and get an EHCP form written up. She had been concerned about his behaviour and how he would cope at school. However, as explained, the nature of “Fizzy-pop autism” is that he will always try and put on a brave face in front of strangers. He will find little things (a door being ajar here, a misunderstood phrase there) will shake him up inside, but he will not explode until he is safely back at home in his “safe place”- where he will explode all over Madmummy, Hubbykins and Jabbermonkey!
However, he coped far better than expected and his afternoon tantrums have been no worst than usual. He still struggles to engage in play and can’t communicate well with his peers, but he seems to enjoy being with a big group of friends his own age. Indeed, since getting a list of his class mates names to write Christmas cards, he has done nothing but read and copy out the names over and over again for the past 3 months. He loves reciting their names and gets very cross if Madmummy mis-pronounces them. More recently, however, he has obviously become more comfortable at school. as there has been a number of incidences of hitting, scratching and pulling hair. These seem to be caused by his communication frustrations and sensory impulses and his parents are at a loss as to what else to try to correct the behaviour. But tantrums are not nearly so long and wild as they used to be.
More recently he has had an eye test and it has been found that he has reduced vision in both eyes. He now dons the cutest glasses that make his eyes look huge. Since having them the last few weeks she has noticed that his eye contact is much improved and that he actually looks at her lips when she speaks. She is hopeful that this will improve his diction and ability to comunicate.
He has recently developed a love/obsession of copying letters and words and seems determined to decode the mystery of the written language. As usual, he will probably learn reading and writing in his own unique manner, but he is already able to read letter sounds and blend them into words. Visual learning has always suited him and Madmummy is confident that his diction and vocabulary will improve as he learns to read. So, she had better start saving for uni!
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