These 3 things have always featured heavily in our lives and I couldn’t talk about Joseph and the issues that we face without addressing each one of these topics.
Like most pregnant woman, I had been told the benefits of breastfeeding and although I wasn’t fully sold on the idea of getting my baps out or how ultimately it was best for the baby, I was happy to give it a go.
Right from day one, Joseph had not been that textbook baby we all desire. He didn’t want to feed and I recall shortly after his birth, the midwife telling me she’d had to give him some formula because he was jittery and clearly wasn’t feeding from me. I think at this point I am supposed to say that it affected me greatly and I was mortified that she had fed my newborn with this manufactured filth; it didn’t. Quite frankly, I couldn’t have given a stuff at that moment in time. I had been awake over 24 hours, was drugged and sore. I was concerned as to why he was jittery obviously, but I actually hoped that someone would take him away from me for a day or two and let me catch up on some sleep. Despite me convincing myself that 6 years of shift work would prepare me, I couldn’t have been more wrong and already I was feeling a shock to the system. My mum tells this story, that when I was born (in a maternity home), it was like a holiday camp and she was pampered so much she didn’t want to come home. After about 2 weeks, she eventually went home when she realised my dad hadn’t been brushing my brother and sister’s hair and they looked like waifs. I was hoping for my own holiday camp experience but wonder whether she was in fact drugged too and cannot remember how bad it actually was.
He never seemed to settle, no matter how much I fed or winded him and I was waiting for this motherly instinct to kick in that tells you what your baby was crying for; it didn’t. I was hoping for a ‘Look Who’s Talking’ moment where he told me what was wrong, yet that didn’t happen either.
It took him ages to feed and wind and it seemed like a continuous circle of events. On one occasion, I planned to take him for one of those baby photo shoots in Boots. I must have spent an hour feeding him followed by an hour winding him. When I finally arrived there he finally seemed all nice and settled and I laid him down ready for the photo and he threw up everywhere and that’s what became the normal routine for us. Eat, wind, vomit, repeat.
At 4 weeks of age, I noticed some blood in his stools and we were referred to the Paediatrician for further investigations. After a number of appointments, we were told that it was a sign he was allergic to the milk protein and to correct this, they wanted me to exclude milk from my diet. It was most bizarre that I was asked to continue breastfeeding my baby yet exclude milk from my own diet. I had the option of switching to a prescription formula at this stage but I wanted to carry on and if excluding milk from my diet would make my baby better, then so be it.
I went to the doctors on numerous occasions and told them that Joseph still wouldn’t settle and I get the impression my concerns were dismissed due to me being a new mum. Everyone knows that babies bring a little milk up after a feed but when Joseph regurgitated, it was absolutely everywhere and I questioned whether this was normal. This went on for weeks until at 16 weeks when he was bringing up some yellowy fluid along with him being his usual crying self. I took him to the doctors who said it was bile and immediately admitted him to hospital for further investigations.
The Paediatrician took one look at my gulping baby and said he was displaying signs of acid reflux. He had been born 4 weeks early but was a healthy weight (7lb 1oz) and had always been at the top of the centile chart. When he was weighed, it had dropped significantly and the doctor wrote on his notes ‘failing to thrive’. I suppose that was his first label and my immediate reaction was one of shock. It sounded like a description of a small child from a victorian novel, whose parents didn’t have enough money to feed him. I felt guilt, in that my own milk was not enough to keep him fit and well but I also felt a sense of relief. Now we had a diagnosis, he would surely be given the right treatment to correct it.
We spent 5 days in hospital together and saw dieticians, breastfeeding specialists, paediatricians and anyone else who wanted to have their two penneth. He was given the prescription milk at that point, which I was hoping would remedy some of the issues and I was asked if I wanted to continue breastfeeding too. I think anyone with sense, who could rationalise would have said at that point, that it was an appropriate time to stop, but the stubborn streak in me refused to give in. I felt that if I stopped at that point, I would be a quitter and I would stop when I felt ready to, not when the situation dictated. I had always had in my mind that I would try and get to 6 months and we weren’t quite there. They all seemed happy with my crazy decision and that’s when the milking machine was rolled in. Expressing milk is not a delightful experience and until that point I had used a manual one (they had been on offer so I wasn’t going to spend more than necessary), but now I had got an electric one to try and stimulate my milk supply. It wasn’t just a pump though, it was a double pumper. If ever there was a point when I had felt like a cow, then that had to be it. Before long I had more milk than I knew what to do with (neither did the hospital staff and had no idea how to store my human milk factory – I was told this was Rotherham and they weren’t used to breastfeeders?!) I’d had frozen milk brought in from home and was using every reserve possible to feed Joseph so I did not have to rely on this other milk they had prescribed. They had told me that his stools would change to a dark green colour and the thought of that was keeping me pumping. I pumped and pumped and tried my hardest to get him to feed and tirelessly gave him the various medicines before and after feeling. The joy I felt after being told he had increased in weight was immense and we finally made it home for the weekend. Quite fortunately really, as it was his Baptism and I had been worrying as to whether it was still going to happen. We were sent home with the pump, prescription milk, medications to stop the vomiting, medications to deal with the acid and we got on with it, as that’s what you do isn’t it?
I read countless articles as to how long the reflux would go on for. One promised it would stop when they learn to sit up, another when they are weaned and finally, possibly when they are walking. I was wishing his childhood away because the reflux was difficult to manage. I stopped breastfeeding at 6 months and 1 week (to prove a point) and we carried on with sleepless nights and a vomit filled house. The only difference was, his stools were now green and his vomit was brightly coloured from the food he was eating. He was still up in the night every few hours and it seemed to be through discomfort more than anything.
Another problem we were having at the same time, was his blocked tear duct. At around 10 months of age, he was admitted to Rotherham General Hospital and his tear duct was probed in order to cure the blockage he had and stop his eye watering. Seeing my child undergo general anaesthetic whilst all this was going on put even more of a strain on us all.
At around one year of age we were referred to a Paediatric Gastroenterologist at Sheffield Children’s Hospital and his medications were changed once again and it was suggested he could also be intolerant to certain types of food. He was admitted for a Gastroscopy and when he came round from the anaesthetic, he was attached to a monitor that he had to wear for 24 hours to monitor his acid levels. It was suggested we remove egg, wheat, milk, soya and gluten from his diet and again referred to a dietician. I questioned what he would actually eat if we removed all of that, but by that point I would have tried anything just for him to stop vomiting and crying.
As a side issue to his feeding problems, he was dribbling excessively and his face became sore and infected. He wore either a bib or scarf most of the time to try and stop it spreading to his neck. More medications followed to try and solve yet another medical problem for him.
When we did start the new diet, within a few days he slept for the very first time all way through the night. Approximately 8 hours sleep aged 14 months. Not a bad effort eh! So when we were asked to reintroduce certain foods, I didn’t want to, for fear of him not sleeping again. He didn’t sleep through every night but it was a massive improvement. After reintroducing ‘normal’ food little by little, he seemed fine and the specialist thought he might have grown out of whatever the problem was. I’m not sure what did happen, but we finally had a settled child for the first time since he was born. What proved difficult was, introducing foods back into his diet that he’d not had for a long time. He wasn’t interested in foods that he had previously liked but I was just relieved that he wasn’t distressed anymore.
We had a little bit of respite as far as eating was concerned, but gradually over the time, I noticed Joseph refusing more and more foods. If you asked him to put certain foods in his mouth he would refuse and regurgitate it. After his diagnosis of autism, I realised his now formed eating habits might be connected to sensory issues. Again, not one to be defeated I have tried over the years to encourage him to eat new/old foods. When I say encourage, I mean I have sat with him whilst he has sobbed his heart out and told him that he can’t spit the food back out. Even writing this, I understand that it seems rather cruel to force someone to eat something that they don’t want. But, how do I know whether it is caused by a sensory issue or he is just going through a phase? All I have ever wanted is normal and knowing he has eaten lots of types of foods before, I have never understood why he suddenly didn’t like something.
When I was asked at Ryegate what he ate and listed the foods; curry, pasta, veg, fruit, chips, rice etc etc, they seemed pleased with everything he would try, given the fact some of the children they see have huge issues with many foods. I was asked whether he liked certain coloured foods. I had not thought about it at that point, but yes he has always favoured brighter foods rather than paler ones. He will happily eat a tomato based bolognaise sauce but a cheesy type one would be a no go. He likes to keep his food separate on the plate and does not like it if one becomes entangled with another.
A few years ago he wouldn’t eat bread despite having allsorts of bread in his early life and it annoyed the hell out of me as I just wanted to give him a sandwich. Everyone eats sandwiches for God’s sake! So we started with breadcakes and then moved onto white bread, then wholemeal bread and now he will eat a whole dry loaf if you don’t watch him. You see, that is another problem we have; we live life to opposite extremes. He either hates something or will be completely greedy and obsessive about it. I recall posting an update to Facebook about Joseph eating a sandwich some years ago and most people will probably have not realised the significance at the time but it was a big deal in this house. So now he eats cheese spread sandwiches and always wants ready salted crisps, but I purposely move the ready salted crisps to force his hand into eating the cheese and onion or the salt and vinegar ones. Or sometimes I don’t just get the normal crisps, I buy hoops or crinkle cuts so that he doesn’t flip a lid when he doesn’t have any ready salted ones. I have tried to get him to eat a slice of cheese or ham and he will gag on it, despite him eating cheese and ham on a pizza. So that is my next goal. Being able to get a cheese spread sandwich from a shop is impossible and I want to walk into a shop and get something off the shelf for him without having the need to make an emergency Maccy D’s stop if we need to grab something quickly.
I may employ some unorthodox methods that would not be advised by the professionals but with encouragement and a little tough love, we have managed to achieve brilliant results. Ironically, after failing to thrive in his early years, when he was weighed by the school nursing service a couple of years ago, I received a standard letter which advised me Joseph was obese. I managed not to throttle anyone at that point and rather than seeing it as me failing, I saw it as a result that my son was eating.
I have learned to listen to the professionals, but also learned to rely on my gut instinct more. I don’t profess that I am expert in autism and neither am I an expert (yet) in my own son. I’ll make mistakes along the way like any other parent but I know success when I see it.