It’s been a tricky last few weeks.
During a “good” week our lives tend to be fairly crazy anyway what with 4 kids, the cat and a hubby who generally works shifts, sometimes nights away from home and no immediate family support here. Add in a few uncontrollable elements (not just uncontrollable children) and something relatively minor in the grand scheme, is often enough to send me la la…and not in a peaceful teletubbies kind of way….#ooh throwback moment# but topical since hubby informs me that a company has purchased the rights and will be re-making those loveable characters with the television bellies in the near future. Did any of you know that Tinky-Winky was supposed to be gay (allegedly)? Anyway, I digress.
I have not written much about my older children, largely to protect them as my eldest has expressed an interest in following the blog, although to my knowledge has not yet done so. H – in case you have signed up, “hello – go tidy your room and pick up the wet towel!” but also I have refrained from writing about their lives because parts of their journey to adult-hood are not really mine to tell and I do not want to embarrass or humiliate them – if you are a parent of a teenager or even “tweenager” you will know that you can embarrass your children in a myriad of ways, sometimes just by being present and saying hello. I actually remember threatening (In a loving way you understand!) my younger brother waaaay back by telling him if he didn’t do x, y, or z, I would kiss him on the cheek in front of his friends. This tactic I have found also works astonishingly well with your older children and is largely I suspect one of the reasons why they have not kicked up too much of a fuss about taking the bus to and from school – less opportunity for me to be embarrassing.
Nonetheless, my older children are every bit as important and special to me as the littlies and whilst certainly not intentionally, are often made to take a back seat. This is of course partly because they are older and more capable of doing stuff independently. In fact, I would very much like to send them on in the world with skills equipping them for their lives ahead and so that their future partners who will have to live with them, love them and put up with them, are not cursing me for mollycoddling them and being unable to so much as stack the dishwasher. (NB, this is still a work in progress, I have yet to cover replacing the toilet roll and working out washing machine programs plus actually tidying the kitchen once they have finished making toasties, eggs etc but we live in hope).
My eldest is long-suffering. He was only 8 when the Minx arrived with such drama and fanfare. After enjoying the status and joy of being the much wanted, wholly cherished, wrapped in cotton wool first-born, we decided that we liked this child-rearing business so much, we presented him with not just 1 but 3 further siblings over the years.
Cue rapid demotion from the one and only role, adored and fussed over protigee, to being the ground breaker, the preparer and paver of the battles to come; the one who would experience the toughest rules and regulations as we ultimately
gave in relaxed the rules a little more for the younger sibs. Who had to wait the longest for their first electronic device? (& apparently was the ONLY boy in the whole school who didn’t have a DS) Who had to wait until they really were 12 to watch their very first 12 rated film, who had to bath, hair wash and ACTUALLY wash and teeth-brush every night with supervision? Yup numero Uno (& before you call the NSPCC on me, yes in an ideal world, I would still have those same ground rules in place for all the children but I defy anyone with more than 3 children to find they can manage quite the same stringent rules and guidelines that they did…either that or you are a far better parent than me).
All the children have come a long way both metaphorically and physically in the last year. Up-routing them from their lives in Jersey, especially the elder 2 who had lived there for 14 and 11 years respectively was no mean feat. One of the reasons, I didn’t move to the UK until almost 6 months after hubby did, was to allow them to finish their academic year in school, to say their goodbyes properly to their cherished friends and our family and I suppose to achieve a degree of (shudder, horrible over-used American expression) closure.
This was especially important for our 2nd eldest child, J. J has aspergers with sensory processing disorder. We didn’t get a formal diagnosis for him until January last year, despite us recognising as parents that “something” wasn’t right from the age of 6 and repeatedly speaking to different professionals about our concerns as well as doing parenting courses, reading parenting books and general research. That we were discharged 3 times from the Child Adolescent Mental Health Services (CAMHs) before the powers that be sat up and took notice of what we were saying, speaks volumes in itself.
In fact, it took very serious incidents, trauma and near tragic events for our entire family before we finally got the help and support both J and we so desperately needed. Until this point, it was far easier for the “professionals” (& I am not alluding just to CAMHS here) to explain away certain behaviours as a reaction to the difficulties of being in a family of 4 children, one of whom had profound medical/physical care needs from a young age. I am not doubting for one moment that this does factor in but if we parents had been listened to and our opinions respected at a much earlier point in the process, our lives may not have gone as quite to hell in a hand cart as they did 2 years ago.
I am skirting round the serious events of 2013 which eventually led to J’s diagnosis. I am offering glimpses of the past and of what occurred without explaining the full devastation and fallout that occurred. It is not my intention to be cryptic or leave you wondering in an attempt to be mysterious. Perhaps if my son was younger, I would cover this in more detail but he’s fast approaching the teenager years and has a right to privacy and dignity. He has made huge strides and come a long way from the frightened, aggressive, isolated and angry little boy that he was and we as a family have learned numerous ways to assist him on that journey. It is only fair that we respect that and move on as he has done.
Nonetheless, aspergers doesn’t go away. It can be managed (to a point) but changes in routine, bumps along the road and general difficulties with social and emotional communications make being an aspie (affectionate term) a hard road to walk. Add in massive changes to your environment, moving away from all the friends and family you have ever known to a strange place, strange school, (& a mixed sex one too!) I am tremendously proud of how well J has approached everything so far but it hasn’t been easy.
It’s important not to generalise; having met one person with aspergers doesn’t mean you have met them all but there are many situations that people with aspergers will relate to or find difficult. J doesn’t find it easy to read people’s body language and facial expressions – even those of his own family. He frequently asks me if I am cross or angry with him – normally I am just thinking of some forgotten item I need to add to the shopping list or whether I have remembered to send a birthday card – but for him the puzzled look on my face (or being away with the fairies) could be a sign that I am upset and this is worrying and stressful for him. He often talks of having to wear a mask in public as he doesn’t know how to react to general banter, teasing or even just every day conversation. Eye contact is in his words, over-rated.
Often children on the spectrum – aspergers is now routinely diagnosed as High Functioning Autism – are thought of as lacking empathy. But that is not our experience. J appears to feel too much if that is possible; he’s like a sponge, absorbs everything going on in the family. If hubby and I are mulling something over, considering our options, no matter how carefully we try to keep this from the children, J can feel it. He picks up on the minutiae of everything and anything and that adds to his stress levels, which in turn makes life tricky and less manageable for the rest of us, so it can become a vicious circle.
Parents of kids with aspergers and those who understand autism will often tell you that a child can present very much the same as their peers in the school environment and then rapidly escalate into a total breakdown of communication, frustration, almost toddler like tantrum behaviour at home. This has definitely been our experience. It took for things to really hit rock bottom before J reacted this in a very extreme way in school and in front of medical professionals and they were sharply awoken to exactly what we were and had been dealing with for years
When J finds things out of his control, the harder he tries to keep it together and the longer he tries to do this, often means that he explodes into meltdowns at home, especially if he’s tried so hard to be “normal” at school all day, especially bearing in mind that he has not necessarily understood or engaged naturally in the same social cues that the rest of us take for granted. He can find it difficult to eat, sleep or even be around members of the family. He likes to withdraw to his room where he has some calm, peace and control.
He is very good at anything tech, enjoys gaming and whilst in an ideal world, I would limit his time on gadgets, we know that this offers him stability and routine and can help regulate his emotional well-being. (We are of course careful about exposure to violent games and have very strict rules in place about what he’s allowed to play.) In his room he knows that this is his safe place.
My understanding is that many people with aspergers like explicit rules, for things to be very black and white, no variables or areas that are open to interpretation. Again this reflects our experience. A lot of communication break downs occur in our family because of basic language misunderstandings. A prime example over the years: “J would you like to help me unload the dishwasher please?” J: “No” I or hubby would then explode with anger at the perception of a child being rude and disobedient and there would follow an enormous argument that would reverberate round the family as a whole and leave everyone drained, anxious and upset.
However, that is not what J meant nor intended. As far as he could understand, I had asked him a question about whether he would like to do something and he was genuinely responding, no he didn’t want to. But had I phrased the question differently “J please will you help me unload the dishwasher?” He may not have wanted to do it but he would do it because he had been asked. He responds very literally and there is an unwavering, brutal honesty to both his questions and answers. (NB never ask a child with aspergers if you look fat in an outfit, unless you are prepared to get an answer you may not necessarily have hoped for….#does my bum look big in this?# )
We have laughed quite a lot over these language based misunderstandings in the last couple of years. I try my best to give absolute responses or questions wherever possible but still get it wrong from time to time. Nonetheless, J is doing his best to interpret when I might mean I actually want him to do something despite having given him a less than clear instruction. He will readily quip back “no I don’t want to tidy my room but yes I will do it!” It’s been a massive learning process for us all.
As you can probably imagine having a medically complex child means our lives are often not nicely predictable and routine. We can’t package everything into neat little timetables when we embark on hospital trips/procedures and things often take longer than anticipated or even arise out of the blue throwing us into maelstrom.
Minx had a trip to GOSH recently for scopes of the stomach and bowel which meant a few nights away from home and the 3 other children being cared for by my mother in law. Lovely and as an excellent grandmother as my mother in law is, it’s no mean feat caring for 3 boisterous boys, getting them off to school in the morning, fed, watered and vaguely presentable with appropriate kit bags on the correct days and then repeating the process in reverse once they walk in the door after school again. Nor is the structure there in the same way when it’s only one of you holding the fort, (especially when it’s not something you do on a day-to-day basis) and even I, practiced as I am, notice how hard it is when I have do without hubby’s support because of his work commitments.
A few days after returning home, the Minx was poorly sick, floppy, lethargic with a high heart rate and low oxygen saturation which meant an overnight stay chez NHS Hotel Harrogate. Something as simple as tonsillitis had knocked her for 6 and was a timely reminder that you can never take good health for granted with fragile kiddos. Armed with antibiotics and pain relief plus plenty of rest (suggesting to the Minx that she might benefit from a nap is a dirty word round here! Why? If someone told me I could go to bed in the middle of the day, I would bite their arm off!!) which meant snuggling on the sofa watching copious Disney movies, didn’t add back into the routine element either
So this has made family life difficult for us all. Already surviving on less sleep than I needed, my patience levels lower than they should be and half term in the mix, it has led to a few weeks of life being quite bumpy and less structure in place. This means that J is automatically on edge and leads to frequent outburst that seem to come from nowhere.
When a toddler has a melt down, there is normally some forewarning of the events about to unfold but when an aspie is struggling, it can hit you like the proverbial ton of bricks, come from nowhere and totally blind side you. I have in the past described it as like flicking a light switch, so sudden and rapid can be the onset.
Trying to strive for calm when it hits is of course the best way forward – even if you are the only one that is in control of your emotions, at least one of you is – but this is easier said than done, especially as to a “neurotypical” (a term I have found aspies often use in describing those of us without aspergers) you generally have no idea what might have triggered the outburst or how to rectify it.
It may sound petty, but J, when particularly stressed, can be over-wrought by someone in the family just looking at him, me serving the wrong food, the noise levels in the house being too much for him or arguing amongst the other children or their friends.
J can love a food one week but hate it the next (normally when I have bulk bought it because it was his absolute fave the preceding week). He can want second helpings of a particular dish one night and refuse point-blank to eat it 10 days later. The sensory processing aspect of his condition means that he often strives for extremes in all things – he loves playing very loud music in his room but eating out in a restaurant can be excruciating for him because of the background noise of other diners and even the noises from the kitchen.
He has to push himself to climb the highest tree, go on the most extreme rides at a theme park (& guess whose usually the lucky
mug one who gets to accompany him?!) and achieve the best score in all games. He craves and seeks intense stimuli but is not a team player. In fact, he finds games particularly difficult. For him it’s not about the enjoyment of playing. If he’s not winning, then he is in his opinion literally a “loser,” rubbish at everything and there is no point in taking part. It’s not a question of being a sore loser, (& it’s taken me many years to understand that) his self-esteem is so tied up in what he has or hasn’t achieved that he feels it defines him and what he is. Bowling today was a case in point.
Sometimes I think it’s easier not to do these types of activities because it casts a pall over the whole family and our enjoyment of the outing; but then I remember it’s important to challenge him and his perceptions because he lives in a world that he has to get on in, and ultimately succeed in. By succeed I don’t mean being Prime Minister or CEO of some high-flying company, but he does have to find his niche and a way of getting along with his peers. So with the Minx’s ill-health and J struggling a lot emotionally for the last few months, I am finding things hard.
The final nail in the coffin of this last few weeks dramas was seeing the pediatric surgeons with our youngest son. Hoover G (nickname!) has had very severe reflux since he was a tiny baby. Over the last 2 years it’s got worse and he’s now (in the words of the specialist) on a stonking dose of medications with still uncontrolled, painful symptoms.
The 3 x daily medicines just about control the vomit at will stages that we reached last year but don’t stop him actually feeling sick and as with potty training, you are never quite sure whether it will be a false alarm or the real thing. I have become very inventive in ways of finding possible vomit receptacles at short notice (although I drew the line at using the much cherished 30 + 10 Mulberry handbag, sick in the car was preferable in my eyes to the contents of his breakfast in my Glenda, yes she has a name…)
Added into the equation is the fact G shares more than a few symptoms with the Minx, although generally to a lesser degree. He cannot, even at the age of 8, drink anything without a straw or without having it thickened to the consistency of syrup or else he chokes. He struggles with certain food textures – chocolate and crackers for example can get stuck in the roof of his mouth and he chokes on his own saliva. He has occasional muscle weakness (although does spend time tearing around like a loon in a way the Minx can’t) and gets double vision in his eyes.
Following referrals scans, examination, tests, clinical and family history the pediatrician referred us to a gastric surgeon and the surgeon spoke the words I did not want to hear. I think I had lulled myself into a false sense of security. We would find a “fix” or a cure with more medications. He would be able to wave his magical wand and not his scalpel and sort Hoover G out.
Instead, he agreed that it was more than likely Hoover G and the Minx do share some congenital abnormality or genetic syndrome and that George’s issues were only likely to get worse, certainly reflux and swallow wise, as he gets older. Despite earlier promises, he will not grow out of this and the long-term implications of uncontrolled reflux damaging his esophagus, causing scarring and thickening are very real so we need to take action and soon.
Before proceeding down a surgical route, the specialist wants G to have a full M.O.T to rule in/out other issues. So we are gearing up for yet more medical appointments; the barium meal, the bronchoscopy to check his air way, the gastroscopy and biopsies of the stomach and pH study to measure his reflux levels over a 24 hour period. It’s all horribly familiar and not a path I was preparing to go down with G if I’m honest.
I will confess to having a bit of a blub when we left. Hubby was surprised and asked me what had I been expecting to happen based on the evidence we already had? Daft maybe but I am but I definitely wasn’t prepared to hear what was said. Yes we have come through this once before and yes of course we will do it all again but damn you genetics, I am really not a happy bunny. I think we have had our fair share and then some!
Nonetheless, it’s pointless to dwell on all this too long or think why us? It’s happened, we can’t change it so we need to make the best of it. In this house when life gives you lemons, we don’t just make lemonade, we make Limoncello and gin & tonics. Bottoms up, chin, chin, drinkies anyone?
Until next time……