Food, differently. Part 3: the search for a magic formula

Looking back, 2005 marked something of a milestone in Tom’s story. We had pretty much weaned him off the chemotherapy, his heart was stable and we could finally see our little boy’s face.

For a further year, he would crawl and wander around with a “dangly” in his tummy: the PEG tube that had been inserted was either curled up and taped to his belly, or popped inside a little bag that hung around his neck. Whenever came time to feed him (still very often indeed), we would attach an additional tube (extension) and syringe, and wait once again for gravity to deliver the formula to his stomach. The gravity dance was the same as it had been with the NG tube: a little too low and formula came back up and into the syringe; a little too high and it was too fast, and vomit swiftly ensued!

Finally the day came when we swapped the “dangly” for a “button”! Other than the need for another general anaesthetic, this was a day of great celebration. The button was tidy, easy to manage and could be replaced at home in the case of a blockage or other issue. No more dangling tubes!

So… stability! At least in the specific area of how we were able to deliver food to our boy’s stomach. That done, the focus turned all the more intensely to finding the one, magical formula that dieticians and doctors alike told us must be out there: the one white powder that, when mixed with water, would deliver all the nutrition our little boy needed AND stay in his tummy to be digested instead of being vomited all over my dining room table.

We had started with standard baby formula, but quickly moved on to more specialised “feeds”. He stayed on an infant feed for years longer than the recommendation, interspersed with trials of many other anti-allergenic, “pre-digested”, amino acid only feeds. All smelled and tasted worse than the previous ones and none bore any resemblance to milk or food of any human kind.

Fro the time we were prescribed specialise formula (Tom was 8 months old) to my food meltdown with the dietician when he was 3 years old, I never felt that I was feeding my baby.

Throughout this time, Tom continued to vomit – every day, several times a day. Always explosively, always messily. My washing machine was endlessly spinning with clothes, sheets, blankets, muslin cloths and towels covered in foul smelling formula vomit.

Bottles of feed had to be picked up from the chemist monthly. We “earned” the right to an additional recycling bin on our kerb to allow for all those little glass bottles. And every feed time, I felt as though I was medicating my child. At no point did I have any sense that I was feeding him, sustaining him, nurturing him.

You may think, reasonably, that the tube was the barrier to that ability to bond with my baby, but actually the tube was my friend. Its introduction meant the end of dreadful battles trying to feed him earlier. As silly and frustrating as the tube dances around the house could be, I was at least able to ensure he got the nutrition he needed.

But each time I opened a bottle of formula, the smell wafted across my face which screwed up in disgust. And with each new attempt to find that magical recipe, that one formula that would “fix” him, the pharmaceutical magicians seemed to somehow make the smell and taste that much worse.

Which I might not have continued to question, had the vomiting slowed or stopped, or had he gained any appreciable weight. But in those couple of years, he just became iller. His colour varied from grey to yellow and back again, with a very rare day of a pink tinge.  His weight did increase, but ever so slowly and the child simply did not grow.

By his third birthday, I was becoming increasingly desperate, tired and …. informed. I had joined online support groups, researched nutrition, tube feeding, other children’s experience of formula. I was fast becoming an expert parent – or a “difficult” mother, depending on the doctor I spoke to.

I became convinced that there was one option that made a great deal of sense to me and that we had not tried: feeding my three year old “real” food. We had tried all the available formulas and he was getting very ill and losing weight. Nobody offered any other solution because this formula, costing around £60 a day, was the end of the line. It was the magic bullet. And somehow it became Tom’s fault that it wasn’t working… because the dieticians had no other option to offer.

I tried to contact my dietician – phone logs and emails will attest to that. She was on leave. So I called Tom’s paediatrician and had a remarkably short conversation with her. Bear in mind that by now I had a very good relationship with her! I explained my reasoning and she responded by letting me know that there was no scientific reason why ordinary food was contraindicated in Tom’s case. She advised me to go slowly and try foods one at a time, much in the same way that weaning babies do.

It was a Friday afternoon and that evening, we began a new stage of our journey with food: the blended diet.

Three days later, Tom stopped vomiting.

Food, differently. Part 2: NG to G tube

August 2004: Tom was a year old. A momentous achievement given his diagnosis of leukaemia and his considerable feeding difficulties.

We had been feeding him using the NG tube for four months by now, and his cheeks were constantly red raw from the tape used to secure the tube.

We also now had an overall diagnosis to explain all of his medical problems: our lovely, beautiful pixie child had and has Noonan Syndrome. One common aspect of this syndrome involves feeding difficulties, although the need for tube feeding is still rare among these children. It is still unclear why a child with NS struggles to eat, but absolutely acknowledged that the difficulty is real.

While lifesaving, the NG tube was now beginning to be difficult to live with. Tom hated it (imagine a tube constantly at the back of your throat) and there is little doubt that it contributed to his acid reflux. Our good quality tubes were designed to stay put for a week, but there are a range of reasons why they come out:

• Tom’s favourite: pulling it out of his nostril! I became adept at finding new and wonderful ways to use tape to make that difficult, but he kept up with me as his fine motor skills improved!
• A good sneeze: often enough to propel a good section of tube out of his nose which meant reinserting it to ensure the end was in his stomach.
• My least favourite: the vomit comet! If vomiting was particularly violent, the end of the tube would come out of his mouth, leaving me with a child who had a tube going in his nose and out of his mouth. I’m not sure why, but this always left me feeling really queasy.

Once he had realised that he could pull the thing out, our days became an endless ping pong game. Tom still needed feeds every couple of hours because his stomach could only tolerate very small volumes, so the tube needed to stay in permanently. He disagreed.

So he pulled. I re-inserted the thing (see below). He pulled. I re-inserted. Often five or six times a day.

Inserting an NG tube is simple but not pleasant. Essentially, you gently push the tube up the nostril, round and down into the throat and eventually into the stomach (via a rather unscientific measuring method involving holding the tube from nose to tummy before you start). That triggers the gag reflex. For an adult, it’s fairly easy to explain that swallowing will help, but babies are trickier to reason with.

Early on, I found only one way to successfully insert an NG tube. I swaddled Tom in a towel (blankets were too flexible) on the floor, and would sit astride him to insert the tube. As little and weak as he was, he could flail like the best of them in these moments and would resist with all his might. It was critical to have all the supplies to hand: water, syringe, litmus paper (to test for stomach acid), sticky tape for his cheek. While I became quite the expert, the whole procedure was usually about 20 minutes of endless screaming and resulted in an exhausted baby and mum. Big sister Kez was always there to soothe her little brother through the ordeal (hello trauma and PTSD, but she was and continues to be my hero).

In the previous months, I had learned a lot about tube feeding. I knew that there were more permanent solutions and procedures that could prevent vomiting, but they scared me. From a different perspective, all Tom’s doctors were convinced that his dependence on tube feeding was very temporary (I never agreed – you only had to spend a day with him to see how very difficult feeding was).

An NG tube is supposed to be temporary – usually a matter of weeks. Tom had his for 8 months.

While temporary, it is actually one of the riskier methods of tube feeding, largely because it’s so easy to insert the tube into the lungs. Liquid in the lungs is (I’m sure you’ll agree) not a good idea. Formula in there – very very bad!

So I began to ask about a gastrostomy, or G tube. This is a surgical opening made to connect the stomach to the outside world via a “stoma” (make a hole from the inside to the outside, hold the layers together with the help of some plastic, and there you have it). A PEG tube, or button stays in situ all the time giving access to the stomach whenever needed.

Our very optimistic doctors were reluctant. I’m not entirely sure why, but I suspect because they expected Tom to start eating, which would have been consistent with his diagnosis of Noonan Syndrome. He did not. I started begging, and Tom’s wonderful cardiologist came to the rescue and got the ball rolling on this procedure.

When placing a G tube, doctors sometimes perform a Nissen fundoplication. This involves wrapping the top of the stomach around itself to stop vomiting. It doesn’t stop retching, and it is usually not reversible.

We decided against the Nissen fundoplication. I felt really uneasy about preventing his body from evacuating if it felt the need to, and Tom’s vomiting was at least not constant.

Tom got his gastrostomy at 16 months, in December 2004. He had a PEG, so a tube dangled from his tummy for a year until the stoma was fully formed, at which point a further procedure swapped it for a button – much tidier and easier to manage!

The feeding regime continued much as it had (as did the vomiting!), but we could finally see our beautiful little boy’s face! No more tape and more importantly, no more red tape rash!

Tom’s gastrostomy stayed in place until last week… 14 years and 8 months.

Food, differently. Part 1:from birth, to NG tube

*I am fortunate to be happily married, with three children. This story, though, is very much the story of Tom and me…

Tom was unexpected. To be precise, we had planned to have our third child a year later than he actually arrived! It was a fairly uneventful pregnancy, and a reasonably uneventful delivery. Indeed, his first few weeks were uneventful. Our family had been completed and we were enjoying the simple pleasures (and chaos) of having three small children under the age of 4.

At 11 weeks old, Tom was taken to hospital:

• Failure to thrive (a dreadful diagnosis wrapped up in monumental maternal guilt)
• Congenital heart defect (pulmonary valve stenosis that was treated with open heart surgery later)
• Leukaemia (juvenile myelo-monocytic leukaemia – rare and fatal without a bone marrow transplant. Tom was one of the few who got through it without that but that’s another story)

And so began our story with food. And our journey with doctors, nurses, dietitians and well meaning family and friends:

“Can’t you see he’s terribly ill???”

“He must drink more!”

“You are not feeding him enough!”

“You must stop breastfeeding, that is the problem”

Any amount of milk this baby drank (unwillingly) came back up explosively. In fact, he often vomited larger volumes than he had consumed. He had no rooting reflex, no instinct to eat. As the days wore on, every meal was a painful struggle. He arched his back, reared away from the teat, cried and screamed for the duration of each feed. I became the master of distraction. 

Every two hours, I would get his bottle ready, and a favourite soft toy. By holding my baby in my left arm, bottle held with the same hand, I would gently stroke his left ear with my right hand, and dangle the toy in front of his face using my mouth… In this way, over the course of half an hour, he might drink 10 or 20ml of milk. More often than not, this would be followed by the soon-to-be normal vomit.

My life was ruled by milk, tears and vomit. Twenty-four hours a day. The demands of two other children filled the remaining gaps and I am more grateful than can be expressed for my lovely husband for keeping the practicalities of life happening around the chaos.

Days merged into weeks as this tiny little baby boy seemed to shrink in front of my eyes. At five months, he looked like a newborn and weighed little more than his birth weight.

“Don’t you realise he needs to grow? He must drink more milk!”

“Let him cry, he’ll soon drink! He won’t let himself starve to death!”

Some babies will absolutely let themselves starve to death. Eating can cause so much pain that it simply is not worth doing. Or they somehow lack the instinct to do so. Or… or… or there is something going on that nobody understands. Make no mistake, Tom would absolutely have died without the medical intervention he received, and without the endless support we had to give him to eat.

As he reached 8 months old, a nurse finally suggested a feeding tube. The relief I felt was utterly overwhelming, quickly followed by a desperate longing to know why I had not been told about this possibility earlier! A naso-gastric tube was inserted, and I learned how to manage it – inserting the tube to avoid endless calls to the community nurse or trips to the hospital; aspirating fluid to ensure the tube was not in his lungs; flushing regularly to avoid blockages (with as little water as possible, for fear of the vomit!); finding just the right method of taping the tube to his cheek to avoid it peeling away (snot is your enemy!);tucking the tube into a babygro away from little baby fingers; balancing a syringe of milk while holding a struggling baby (who still hates feeds, who still vomits, who now screams at the sight of a syringe); dancing with gravity and physics to find just the right speed of milk delivery.

At least I was now able to make sure milk got to his stomach. We had bypassed the mouth that was so absolutely determined to refuse it. In doing so, we ensured that a little more nutrition was absorbed before the inevitable Krakatoan eruption of vomit!

On day 1 of NG tube, we also became the proud borrowers of a feeding pump. This little machine was to save our boy’s life and its “beep” became one of my most loved and hated noises. To this day, my whole body jumps to standing when I hear it (in visits to hospital or if by some strange coincidence another parent is pump feeding her child at a restaurant). The pump allowed us to feed him slowly and continuously overnight and for the first time in months I had the hope of more than half an hour’s sleep. 

Tom was pump fed overnight from 8 months to 14 and a half years old. 

Memory is a fickle thing, but I believe that we started him on milk at a rate of 30ml per hour. That’s 2 tablespoons in 60 minutes, or 0.5ml per minute. That slowly, we could avoid some vomiting. We continued to “bolus” feed (milk is allowed to pass through the tube by gravity) during the day to maintain some normality for his stomach in the hope that it would learn to cope, and also to free him from the tubes and pumps.

There followed interesting months of following a crawling baby around the house holding a syringe of formula in one hand and a cloth in the other to mop up vomit! I had buckets in each room of the house in the hope that I could get him to one in time to catch the bulk of the eruptions!

 

L’alimentation par sonde – en francais!

Il y a quelques années, j’ai écrit quelques mots a ce sujet en anglais. La semaine dernière, un parent français posait la question a laquelle j’avais tente une réponse. Voici la traduction, en français un peu bancal!

Vous trouverez les feuilles Excel dans le texte anglais ici.

Il y a aussi quelques recettes ici (en anglais, mais j’espère assez simple a traduire).

Arrière-plan rapide: Petit Homme a le syndrome de Noonan.  Il a toujours eu de graves difficultés alimentaires, jamais comprises, et on le nourri par sonde pour le garder en vie depuis qu’il avait 8 mois.  Nous avons essayé le sevrage de la sonde l’année dernière, mais il y a de toute évidence des problèmes médicaux qui doivent être résolus avant même de penser à réessayer. Quand il avait trois ans, ses médecins avaient prescrit un aliment élémentaire (une préparation spéciale de divers produits chimiques qui composent le mythique “aliment complet”, sans allergènes-même les protéines sont décomposées en acides aminés). Mon bonhomme était très malade.  Vomissements plusieurs fois par jour, perte de poids et un bebe vraiment mal.  En désespoir de cause, j’ai demandé à la pédiatre si je pouvais essayer un “régime mixé”- de la « vraie » nourriture, cuisinée avec amour, comme pour le reste de la famille mais simplement moulinée pour passer par la sonde.  Elle était d’accord. Quatre jours plus tard, il avait cessé de vomir.  Sa courbe de croissance dénote une poussée de croissance, qui correspond précisément à cette décision. Les vomissements sont rapidement devenus rares.

Avance rapide jusqu’à cette année (2013).  En raison de l’échec du sevrage de la sonde, Petit Homme a finalement eu une endoscopie cet été, et nous avons maintenant un diagnostic supplémentaire à sa longue liste: colites a éosinophiles. La version rapide est qu’il est allergique, probablement au lait et au blé.  La version la plus longue implique des globules blancs ne fonctionne pas correctement et pourrait être auto-immune.  Ajouté à son histoire de leucémie, et je me sens un peu nerveuse…

Donc… Petit Homme est maintenant au régime : ni laiterie, ni blé (il mange un peu de temps en temps : pommes de terre, pâtes, pain, biscuits, yaourt et fromage??), et plus important, nous sommes maintenant de retour dans le monde des diététiciens. Les diététiciens qui ont été formés selon les directives de NICE sur l’alimentation entérale, qui sont absolument convaincus de l’importance d’un « aliment complet» (une préparation qui a tous les nutriments dans le bon équilibre à chaque repas. Réfléchissez : ni un repas Macdonald ni votre repas de restaurant chic aura été “complet”). Ces mêmes diététiciens ont appris à l’école que l’alimentation médicale est la seule alimentation sûre pour les patients alimentés par sonde.  Les entreprises pharmaceutiques sont très impliquées. Après tout le seul moyen qu’ils vendent leur alimentation est par le biais des diététiciens… Et puis ils rencontrent une mère non-conformiste comme moi.  Je ne suis pas seule, mais je suis une race assez rare que seule une diététicienne avait jamais travaillé avec une famille qui préparait la nourriture de leur enfant comme moi.  Pour des raisons bureaucratiques je ne peux pas maintenant travailler avec elle… Donc J’ai besoin de convaincre ces professionnels que, bien que régime mixé n’est pas et ne devrait pas être la norme vis-à-vis d’en cadre hospitalier, ce régime est sans doute ce qui convient le mieux à mon Petit Homme. Dans l’ensemble elle était contente de mon mélange, mais je voulais faire quelques ajustements, donc ça fait quinze jours que je fais des maths alimentaires.  Je voulais partager dans l’espoir que cela pourrait aider d’autres familles qui se posent les mêmes questions.

Petit Homme mesure 112cm et pèse 21kg.  Il a 10 ans. Il a donc besoin d’environ 64 calories, par kg, par jour (indication de la dieteticienne):

64 x 21 = 1344 Cals par jour

La diététicienne demande 20% de ses calories en protéines, 30% en graisse et 50% en glucides.  C’est là que les maths deviennent un peu penibles.  Commençons par le travail en calories d’abord:

20% de 1344 = 269 Cals de protéines

30% de 1344 = 403 Cals de graisse

50% de 1344 = 672 Cals de glucides

Tout va bien.  Maintenant, le problème est que sur les emballages alimentaires, vous ne recevez pas donné de protéines, de graisses ou de glucides en termes de calories, seulement en grammes.  Alors maintenant, nous devront convertir ces calories en grammes.  Pour les protéines et les glucides le nombre magique est 4, pour la graisse, il est 9.  Exactement pourquoi m’échappe, mais j’ai fait mes devoirs, et la diététicienne a confirmer mes calculs:

269/4 = 67g de protéine

403/9 = 45g de graisse

672/4 = 168g glucides

Youpi!!!  Maintenant, au travail !! Mais… attention ! Il est vrai qu’un steak contient des protéines, mais un steak de 100g ne contient qu’environ 79g de protéines.   C’est là que les emballages alimentaires, et les sites Web tels que http://www.NutritionData.com sont vraiment pratique.

Ensuite, j’ai créé une liste d’aliments que j’utilise couramment pour mon Petit Homme. La feuille Excel qui suit est un exemple des données que j’utilise pour mes calculs.

Feuille 2 a tous les ingrédients alimentaires que j’utilise actuellement.  J’ai parfois insérer un nouvel aliment.  J’utilise des herbes et des épices, mais je ne les compte pas – elles sont pour le gout !  Vous verrez que le haut de la feuille 1 est un peu désordonné et a un certain nombre de recettes au sommet.  C’est ma table de travail et je n’ai pas passé des heures à l’enjoliver !! Ceux d’entre vous qui savent comment utiliser Excel correctement verront que j’ai fait quelques regroupements de fantaisie. N’hésitez pas à l’utiliser et à ;’adapter à vos besoins!

Une fois que j’ai obtenu cette information, je copie les aliments que j’utilise dans une nouvelle rangée, avec la quantité de chaque aliment que j’utilise.  Je cuit souvent mon riz dans du lait, pour limiter le volume tout en augmentant le total de calories.  Les totaux sont faits pour chaque colonne et j’enregistre le volume total de l’alimentation afin de calculer le Cal/ml ratio.  La recette suivante est un exemple.  Depuis que j’ai fait cela pendant quelques semaines, je trouve cela plus facile avec l’aide de mon fidèle Vitamix pour obtenir des aliments très dense en calories préparés, et Petit Homme se porte bien.

Vous vous souvenez des valeurs que nous avons travaillées ?  Cette recette contient 38 g  de proteines (67), 44g graisse (45) et 180g de glucides (168), pour un total de 1260 Cals (1344).  Le faible volume de 1100ml donne une belle 1,15 Cals/ml, et Petit Homme tolère cette recette très bien.  Comme je change de recette tous les jours, son régime est varié – en calories tant qu’en aliments. Comme tout le monde, en fait !

Pour ceux d’entre vous qui ont remarqué les colonnes de calcium et de vitamine A.  Le teint du petit homme est souvent très jaune, et une cause de préoccupation.  Un des soucis était que je lui donnais trop de vitamine a.  Eh bien – la vitamine A abonde dans les aliments!!! C’est absolument partout.  La diététicienne de Petit Homme aimerait limiter la vitamine A a ~ 500MCG par jour.  Comme vous pouvez le voir cette recette est en dessous de cela.  Mais une recette qui contient une carotte saute à plus de 1000mcg.  Encore une fois, je l’équilibre sur la semaine, mais j’ai trouvé cette colonne très utile.

De même, depuis que Petit Homme suit un régime sans laiterie, il y a un peu de crainte qu’il devrait obtenir suffisamment de calcium dans son alimentation. Comme vous pouvez le voir, il a bien au-dessus de l’apport de calcium recommandé par jour 500mg pour son âge. Bref, une petite note sur la vitamine A.  La plupart des étiquettes nutritionnelles donnent la quantité de vitamine A en UI (unités internationales) … Aucune utilité pour moi!!  Heureusement, j’ai trouvé un convertisseur qui m’a permis d’entrer les données dans mes tableaux : http://www.Robert-Forbes.com/resources/vitaminconverter.html

Cette recette suffit à Petit Homme pour une journée.  Pour l’instant, je cuisine pour lui une fois par jour.  J’ai aussi commencé à réduire sa nourriture de nuit en ajoutant deux bolus de plus pendant la journée. Une petite note sur l’alimentation par pompe pendant la nuit.   À température ambiante, les microbes ont tendance à jouir !  Je me sers d’un mixeur très puissant (le Vitamix) qui chauffe la nourriture assez pour tuer à peu près n’importe quoi.  De là, il est décanté dans des bouteilles stériles. La bouteille se joint ensuite à la tuyauterie de Petit Homme, de sorte que la nourriture n’est à l’air à aucun moment.  À tous les autres moments, il est dans le frigo, en suivant l’hygiène alimentaire ordinaire. Cependant, la chose la plus importante à réaliser est la vie au jour le jour.  Voilà sept ans que je nourri mon fils comme ça.  Y compris la nuit, pendant a peu près 6 heures par pompe. Il n’a jamais eu de gastro-entérite ou d’empoisonnement alimentaire.

Je sais qu’il y a des dizaines de familles qui essaient de nourrir leur enfant comme je le fait, en mixant de la « vraie » nourriture, et je sais que les recettes sont rarissimes.  Je ne me vante pas vraiment de mes recettes ici.  Ce que j’espère que j’ai fait est de vous donner les formules pour trouver ce qui va convenir a votre enfant, et une petite feuille de calcul que vous pouvez utiliser pour faire des recettes qui s’ajustent aux besoins de votre petit (ou grand) ! Bonne chance, et retrouvez la joie du « fait-maison » !!  

 

When dichestion fails..

Today I inchested a lot.

I appear to be suffering from emotional constipation… My dichestion is not as good as it needs to be.

As a result I may be a trifle grumpy. I apologise to my lovely husband in advance…

So…. thoughts on what might work as emotional laxatives?

New word… (telling you now would spoil it! Read on)

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I love words.

This sentence, or sentiment, is a running them on here, and those wonderful lot of you who have hung around to read the sometimes strange meanderings of my mind will recognise it as one of my key characteristics.

Being bilingual, with a spattering of little bits of understanding regarding a few other languages, I am keenly aware of the fact that a language is a reflection of a culture, an identity shared by those who share it. And while the majority of each language stands up to translation, there are always a number of words or expressions that simply get lost.
On the whole, this does not cause any problems, though it may give you an inkling of how delicately difficult the job of a diplomatic translator must be. I cannot say that I am in any real anguish as a result of this difficulty, yet every now and again I find myself wishing passionately that there was a word in English that was the equivalent of a French one (or German, or Hungarian, or Italian, or, or, or…).

What tends to happen is that I am expressing a thought or feeling, either in my head or to a friend, and immediately, the correct word pops in… but in a different language.

This is almost never because I have “forgotten” the English word. Language doesn’t appear to work that way. No. This happens because English does not have a word that is as precise in expressing what I want as the word that has popped up.

If I am alone, I do not even falter in my silent monologue. The meaning is paramount, and the mix of languages is at best noted as interesting before my mind moves on. If my company is also bilingual and I have found a word that is understood by them, again I do not falter. We may laugh about it later, and we may have an engaging discussion about the missing equivalent in English, but the meaning is expressed and long convoluted descriptions are unnecessary. (The same happens if I am speaking French with English and others… though I am most comfortable in English due to my cultural surroundings and life experience. I am a blender in many ways, and I have blended happily into my southern England life.)

The same conversation is interrupted rudely, however, when I am speaking with an English-only speaker. I tend to use the word I want, then pause to explain myself. Luckily, those closest to me know me well enough to go with the flow! Those who know me less tend to look a little bewildered and try to keep up with the ensuing ramble that spews out of my mouth!

Occasionally, serendipity plays a part, and I make links between words, often from different languages, and I create a new one. One that just perfectly depicts how I feel. And this fills me with intense joy, because what can possibly be better than communicating with complete perfection a feeling that till now has no real word?

Just this wonderful thing happened this week.

You may have noticed, if you have been following my writing, that I share my life with a lovely husband and three teenagers. Two of them are at home all the time with relatively significant mental health difficulties that require a great deal of patience, understanding and compassion. They wrestle inner monsters daily, and this often leads them to “explode” with feelings of frustration, anger and anguish expressed as best they can. They need to be rid of these feelings, or at least the flares that manage to escape their heads. And for the flares to leave them, they must be taken somewhere else. The somewhere else is most often my ears, my head, my heart… For their sake, I need to take what they say on board and find the capacity to process it while remembering the feelings are not mine. The latter is important, or I would drown in emotional pain that I cannot control.

Seeing loved ones suffer in such a way is awful. Heart-breaking, soul-destroying, exhausting, wearing, draining, sharp as a sword painful. And yet, the fact that I “see” their pain goes some way to helping them… so it must be done.

There is an expression in French that describes rather well this experience of taking on someone else’s anger, or pain, or rant…

“J’encaisse”

Literally, this means “I put in a chest”. The more formal definition has now come to mean “cashing up” in financial terms, but a more familiar definition is as follows:

“Recevoir un mauvais traitement, subir”
“To receive bad treatment, to suffer” (actually, subir and suffer are not great translations, but that is a whole other three paragraphs, so we will accept it as sufficient for today)

I was lucky enough to spend three years of my adolescence living in a completely bilingual Geneva. During this time, my friends and I frequently moved from one language to the next and back, mid-sentence, sometimes mid-word. It was liberating and fun, and a nightmare when it came to writing essays when we had to struggle to reign in our new found freedom. We often created new words by “directly” translating words rather than switch language… and this is what I found myself doing this week while trying to explain “encaisser” to my Darling Husband:

[Hang on a moment… we need trumpets! And a drum roll… and a string quartet, orchestra, choir?? No, seriously, you may not get it immediately, but I assure you, genius is about to land on your retina…]

Encaisser…. is…. Inchesting.

Oh. Yes.

Put in a chest. Let those awful, negative emotions hit you right in the solar plexus as they do. Allow that pain because it is the only thing you can do. Notice that you actually have a chest in your chest, ready to receive them… Put those emotions in that chest and close it so they cannot get back out to that suffering person out there in front of you. And hold them in there until you can digest them…

Ingest:
the process of taking food, drink, or another substance into the body by swallowing or absorbing it.
the process of absorbing information.

Injest:
absorb the non-funny joke that I am making about emotional pain!!

Inchest:
the process of taking negative emotions or information into the body by absorbing it (through the chest/heart)

There it is… my word. And it is a magical one, because if I do it well (making sure I digest or dichest those emotions so as not to be weighed down by them), I alleviate suffering, and I avoid meltdowns and conflict at home.

It is hard, and it is painful and uncomfortable. But when I name it, and realise what I am doing, it becomes “merely” uncomfortable, mingled with hopeful that I have helped…

 

PS… It has come to my notice that this whole topic might upset some who care for me! No!!! This is a Good. It is a process, it is managed, and while I have not illustrated it for fear of being crude, I “dichest” all those monsters that are not mine, and at worst expel them. At best, I may even make unicorn rainbow parps!

Today I fought with my Daughter’s Monsters…

Today, I fought with my daughter’s monsters. Nobody won, and everybody lost.

Fortunately, hope remains, and we will find each other again because we talk and we love each other, and we respect each other.

Nevertheless… today was a tough day.

Darling Girl suffers from complex mental health difficulties. Their specific nature is irrelevant, and none of these difficulties can detract from her amazing personality. She is kind, compassionate, intelligent and articulate. She is strong and resilient, funny and sarcastic. She makes the best kind of friend: loyal, loving, available and responsive.

And she lives with monsters in her mind. Who make her doubt everything about herself and the world around her. It is no surprise, then, that she can appear to be angry or surly, or any number of other unpleasant things.

Most of the time, I meet these monsters with calm and patience because I know they are simply hiding my lovely, sad or frightened little girl.

Today I was tired. Today, I was not strong enough. So today, I put on my boxing gloves and I confronted the monsters.

How silly.

And ineffective.

Because the monsters, for one, are ephemeral. No amount of boxing gloves, literal or metaphorical will meet their marks. The monsters simply fade into vapour.
Behind the vapour is that frightened little girl…
And so the boxing gloves hit her. [Not real boxing!!! They were all words…]

Today, I fought my daughter’s monsters, but really I fought her. She fought back as best she could, but she cannot fight, because the monsters fight her all the time.

Tonight, I will hold her and tell her how terribly sorry I am. We will hug, and probably cry, and probably laugh. We will remember how much we are there for each other. She will remember that I am merely human, and I will remember what a valiant warrior she is in the war for her Self.

And tomorrow will be better. Because we will forgive each other… that’s just what we do, and that is enough, and that is everything.

Something good, something bad

I often ask my children to share something good and something bad about their day.

It helps them find something good if they had a bad day, and it gives them permission to vent and process anything negative.

It’s also a more focused question that “how was your day?” which in my house is a recipe for disaster.

I have had a busy week, and while I have a million things simmering in my mind that I wish to share, none are ready. The writing is there, but is in serious need of editing!!

So in the meantime, I will share something good and something bad, but more than anything I would love to hear yours… So tell me something good and something bad about today…

Today, three people went out of their way to be kind to me… fairy dust kind of magic!

Today, I received a speeding fine, which threw me into panic mode (all is well, but grrr…)

Your turn please!!

Happy Surrender

 

Photo by Bernard Hermant on Unsplash

Before I publish any of this, I will have to ask three wonderful young people’s permission to do so. As I wrote a little while ago, my story is not merely my own to share, and I must take their feelings into account before I make anything public. So why do I feel it important to write any of this? Our story has been difficult, sometimes (maybe often) traumatic, and I have had many reasons for sharing some of it as we have journeyed along our little life. The two main ones were the following:

1. Writing was and continues to be therapeutic for me. It is a coping strategy, I suppose, and while some things may be difficult to read, I hope that I have always written with respect and integrity. I have always believed in the power of honesty and truth, and I have always been aware that truth looks different depending on your perspective. I hope that if there are things that people object to in my writing, they will at least know that it was and is “my” story and in that, it is true and honest. There have been times when sharing that with the universe was the only way I knew how to keep upright and deal with the everyday.

2. When things were tough, I felt utterly isolated. But somewhere, I did know that I was doing my best, and that my parenting was not the core problem in our lives. If that was indeed the case, then there must be other families experiencing not only the challenges of daily life with special needs, but also the isolation. I suppose I wanted in some small way to break that isolation. To have the courage to say, “This is happening to us. We are doing all we can, but it feels hopeless and I feel a failure.” And hopefully to hear back from others that they felt the same. I also hoped to hear from parents who had been where I was, and who could maybe reassure me that there was hope.

I did find that community, and it continues to exist. Through the amazing work of people like Mark Brown, about whom I wrote recently, and Yvonne Newbold, there is growing awareness of the hidden reality of life as a special needs parent and more importantly, how a child with such needs experiences childhood. Children branded “naughty” and “disruptive” (some of the kinder words that have been used) are slowly becoming recognised as deeply distressed and traumatised, and there is a small section of society that is beginning to realise that we all have a duty of compassion towards those children and young people.

The reason that I feel compelled to write now is that my amazing Offspring should not be immortalised in their childhood pain and suffering. They are more than that, and they are all slowly heading into young adulthood with optimism and (I hope) a knowledge that their inner hopes and fears have been heard.

So I would like to immortalise where we are now and the progress we have all made. I would like to stop and reflect on the lessons we as parents have learned, and hope that the Offspring forgive the mistakes we made along the way.

I also, desperately, want to give hope. To the families that are wading through despair and darkness, who love their children but have no idea how to help them in the day to day, I would like to say, “Have hope. Things can get so much better. For you, but most importantly, for them. Hang in there. Keep loving them. Keep listening to them. Keep fighting for them. They are so utterly worth your efforts.”

So this is where we are now… without specifics for they are unnecessary, but in truth and honesty as I see it:

We are living as a happy family, all under one roof. After years of residential school, our amazing First came home and has been a joy to live with. He is caring and compassionate. He is stubborn, and is looking out on the precipice of adulthood with a more than healthy dose of fear, but I think and hope that he knows we are there to support him in the ways that he needs. I think he knows that we will always have his back. He is increasingly showing, or discovering that he has rather brilliant “brothering” skills, and in that he is helping not only his siblings, but us as parents too.

I have learned that I need to listen to him. That his difficulties in engaging with people, or leaving the house are real and MUST be respected. In return, as we have given him that respect, he has been more able to act and move forward with his life. He will go at his own pace (in fact, as we all do) and I have no doubt that he will do very well indeed. I sometimes forget. I sometimes rush him, and that is never helpful. But that is MY problem to deal with. I have to remember that timelines imposed on young people are societal constructs that never take into account an individual’s capacity, resilience or indeed wishes. This young man may need a little extra time, but he is becoming a wonderful person. Anyone who knows him agrees… (though he may not!).

My only Daughter is home. After years of investing her whole life into “doing the right thing”, and not being heard by those who were there to help her (sadly and shamefully including me at times), she reached her limit as we all do in such circumstances. It still amazes me that she was able to hold on for so long. We have had and are having a difficult year. As a result of the complicated nature of her life and that lack of responsive “listening”, her mental health has spiralled somewhat out of control and she is now grappling with a mind that is “messy” (her words).

I don’t want to minimise what she is going through, nor do I want to publicise it. So I will go no further.

However. This amazing young woman is now learning from home. She is taking her time to heal, to learn to live in her body and her mind, and I am more proud of her than I can say. We are all working so very hard to hear her, to respond appropriately to her, and to let her know that we have heard. She, on her side, is working to believe that. Not an easy task when your needs have been ignored or brushed aside for so many years.

She is the best daughter a mother could have. It wouldn’t be right to say that she is my best friend. I don’t think we are “friends”. I think we are a mother and a daughter who see each other as individual people, and who rather like what they see. She is, as ever, a brilliant sister, but she is trying to let her brothers be the “looker-afterers” to some extent. Like the First, she is caring and compassionate. She puts her friends before herself. She “sees” people: their wonder and their pain, their weakness and their strength. She is quite, quite wonderful.

The Youngest has made the most enormous strides in the last year. Again, I have to attribute this in part to the fact that I made myself listen. He has taken more control over such things as his bedtime (and oh my goodness is it difficult even as an adult to make yourself go to bed early when you are tired!), and his eating.

After a lifetime of severe eating difficulties, he has managed a beautiful, fragile and phenomenal transition to the world of oral eating. When I look back over the past six months, I can see that we were communicating amazingly well and yet using no words. At no point until the summer did we sit down and decide anything about food. I just sat back and gave up control.

And in time, he started to eat a little… and then a little more. And I changed what food I gave him via tube, without really knowing why, without really questioning anything. The only thing I did was ask him to know his weight. And he happily took to weighing himself regularly and telling me. Little by little, he began to take charge of his own eating. So much so that in June or July (I cannot remember, which in itself is pretty amazing) we stopped tube feeding altogether. I felt a confidence in him that was new and unexplained, but I decided to heed it.

Youngest has been eating orally now for about two months. He has even made the decision to take his meds orally. He is clear that there should be no conversation about removing his button for some time to come (even next summer feels too soon for him), and so we do not talk about it. We do talk about food. Every day. Because it is still very difficult. But in a great many ways, it has become HIS problem, that he comes to me for help with.

Maybe the biggest change in me in the last year or two has been a surrender of sorts. A realisation that these three small humans may well be “unfinished”, but that they are complete humans nevertheless. And as such, I owe them as much respect as I owe any adult. As I write this, I do not know whether they will allow me to publish it. I deeply hope so, and in many ways, this is the most vulnerable piece of writing I have ever done because I am putting it in their hands.

What wonderful, amazing hands they are, though! Whether they say yes or no, I could not be prouder of them, or love them more. I hope, for those families who are finding daily life so difficult, that they will allow me to share. Not so much my happy ending, because really it is only their beginning, but whatever we call it because it is really, deeply happy.

The power of Love and Dogs…

About eighteen months ago, Youngest was taken over by anxiety and confusion in addition to his fairly traumatic co-existence with the medical profession and some learning difficulties. This complex combination of factors led to something which is far more common and prevalent in the SEND world, but has to date been a source of deep shame and isolation for families like mine: SEND (special education needs and disabilities) VCB (violent and challenging behaviour.

When our children are overwhelmed or overcome by the world around them, their levels of anxiety rise to incomprehensible levels. At this point, their brain is programmed to do only one thing: run or fight. All the blood supply is redirected to the large muscles of the legs and arms, and two things shut down completely: the pre-frontal cortex, which allows you to think and communicate; and the digestion. Many people in this high state of anxiety will vomit precisely because of this shut down. More commonly, children who already have difficulties processing their surroundings got into “fight” mode. And they become violent, most often with those they love the most.

I suppose unsurprisingly, there is enormous judgement about this behaviour if spotted in public. However, it most frequently occurs behind closed doors, and parents are left desperate and convinced they are doing something wrong. Worse, if and when they talk about the situation, professionals point to their parenting skills, and add blame to the shame that both parent and child already feel about this.

I have experienced SEND VCB with all three of my children at one time or another. I can without exception point to a period of intense and overwhelming remorse for their actions once the storm had passed. And then the remorse and shame they felt caused such self-hatred that they would turn that violence inwards. I have to ask those professionals that may have advised me in the past, and those that advise families today: how does adding blame and guilt benefit anyone in this situation?

Slowly, there is a growing movement to raise awareness about this, especially within the NHS, thanks to my wonderful friend, Yvonne Newbold.

My experience has led me to change my parenting style quite dramatically, and many would disagree. I suppose the only thing I can point to is the calm and quiet in my house, the happy dynamics between three very different siblings, and the increasing empathy and willingness they have to help out.

• We do not limit screen time. At all.
• We do not impose any consequences or punishments for “bad behaviour”. And actually, since doing that, I can honestly say that they have NEVER behaved badly. We have had periods of deep anxiety and distress, but they do not lie, they are not rude, they do not cheat, they help out.
• We do not reward good behaviour either.
• We talk. A lot.

And we consider the children equal in value to the adults. Which means some difficult conversations at times… why should Mum and Dad watch TV in the sitting room at night rather than a child play on the PS4 (at the moment, because I say so… but there is scope and maybe need for more change and compromise).

For Youngest, we needed something additional, something that simply won’t be possible for many families. We needed a dog.

This was a huge decision for me. I am not a “dog” person, and I was well aware that all the work would be done by me. I thought about it for a long time, knowing absolutely that it would be hugely beneficial for him, but really concerned at the impact on me and the rest of the family. Girl loved the idea, Eldest hated it. Husband was not keen on the change and additional work.

I had looked into assistance dogs, but this clearly was impossible for all sorts of reasons. So I reasoned that if we got a puppy, we could train him or her to manage Youngest’s needs.

Serendipity stepped in, and we found ourselves meeting an amazing family who were expecting their first litter of labradors. Shadow was born on the 2nd of January, 2017, and we met him only days later. Then weekly until he was able to come home. Youngest was speechless with joy, which is no mean feat given his seemingly endless capacity for chitter chatter.

Puppy training has been hard work, and I am incredibly happy to see him grow up and settle down. I do find the relentlessness of dog walking and dog company tiring, but I also know that those walks have done me a lot of good, and it turns out that I can be (sort of) a dog person.

Because Shadow has changed our lives. Since coming home in March 2017, Shadow has been Youngest’s best friend. And Youngest has experienced only two meltdowns in all that time. Shadow comforts him when he is sad, provides a comfortable cushion when he is ill or exhausted, and his mere presence seems to be enough to avoid those levels of anxiety that trigger VCB.

If you are affected by SEND VCB.. as a parent, family member, sibling, professional, go and look around Yvonne’s site. There is crucially important information there that will change the way you work and live with our young people.