This week’s post is dedicated to a very special man in my life. His name is Jacob and he is six and a half years old. He is the centre of my world and I would give everything I am if it would make life easier for him. He was born 3 weeks early by planned C-section due to a health issue I had. Since birth, he has had to face many challenges including being born tongue tied. Neither the doctors nor us parents noticed it till he was 18 months old. My mum mentioned that when she was trying to teach Jacob to poke his tongue out, she noticed he couldn’t fully extend it. I remembered seeing a picture of a tongue tied baby at some point, so immediately looked it up on Wikipedia. Sure enough – the picture was a perfect match. I mentioned it to our Paediatrician and he asked me if it looked like an upside down McDonald’s sign. And it did.
Until that point, he could only say a handful of words including dada, but not mama. As soon as he had the surgery though, it was like the flood gates had opened. He couldn’t stop talking. The language development was so rapid it was as if he had been stock piling words since birth and now couldn’t get them out fast enough.
In a previous post (Life ,Without Coconut), I had mentioned Jacob has severe allergies which he developed during the first few months of life, to a number of foods including eggs, peanuts, all tree nuts including coconut and kiwifruit. We have to carry an Epipen (adrenaline auto injector) with us at all times in case of anaphylactic shock due to accidental ingestion. All his food is home cooked and there is no such thing as a spontaneous trip in our households as we always have to take sufficient food with us when we go out with him. The only safe food for him is a McDonald’s Happy Meal as neither the fries nor the hamburger has anything he is allergic too. Occasionally we would take a chance and give him hot chips from a Fish and Chip shop. But every other item in a bakery or a sweet shop is off limits to him, even if they don’t have eggs or nuts because of the possibility of cross contamination. If we go out with him to a cafe or a restaurant, we make sure no one at the table eats anything Jacob is allergic to. As you can imagine this severely limits the number of social occasions we attend including birthday parties because a tiny crumb of birthday cake is like Cyanide to Jacob. Both his father’s and my houses as well as my sister’s house where Jacob spends a significant amount of time, is completely free of everything Jacob is allergic to except for coconut and kiwifruit because the doctors have said those two are not serious enough to warrant complete exclusion.
When Jacob was about two had a half years old and coming off the 2 hourly alternating feeds of milk and solids, I noticed that if a feed was delayed even slightly, he got really grumpy. If I delayed feeding him even further, there was a point after which he was inconsolable and it was difficult to get any sort of food into him. If you did manage to catch it before it descended into a full scale tantrum, and give him some juice or a biscuit, within 10 minutes he was back to being his smiley self again. I know if I wait too long for my food I get real headachy, nauseous and a bit grouchy myself, so I started taking notice of this phenomenon a bit more.
At a meeting with Jacob’s Allergy Specialist, I mentioned what I had observed and he referred us to a Endocrinologist. This doctor thought I was just being paranoid, but arranged for Jacob to be fasted overnight at Starship Children’s Hospital in Auckland. We were told to feed him mid afternoon and bring him into hospital by 4pm. The fasting began at 6pm with hourly finger prick blood tests and lasted overnight. It was heart rending to see his tiny little finger pricked hour after hour allowing him no proper sleep all night. By morning, Jacob’s dad and I were worried, because Jacob was not responding to us and we realised something was very wrong. We tried telling the junior doctor who looked after us overnight, but he said blood sugar levels were fine and not to worry. At 8.30am the Endocrinologist turned up and as soon as he saw Jacob he said he could smell ketones on his breath and ordered blood gas tests and a finger prick ketone test. He asked the junior doctor why he had not tested ketones as per the protocol and I still remember what his response was; “Oh was that the one on the L: drive?’. It was obvious we had been in the care of someone overnight who had not even read the testing protocol. By now Jacob was all pale and almost unconscious. The new tests showed very high levels of carbon dioxide and ketones in his blood. His breathing had become deep and laboured; a phenomenon known as Kussmaul breathing indicating severe metabolic acidosis and is the body’s way of expelling the excess carbon dioxide in his blood. Fortunately, the Endocrinologist knew just what to do and dextrose was administered without too much delay. Within half an hour, Jacob was responding well and although still unwell, we knew we had our boy back.
We were referred to the Paediatric Metabolic Team at Starship who said they had never seen a condition like that before. To this day, they have not been able to classify it, but agree with us managing it by maintaining a regular feeding regime. All we know is at some point after a feed, his body stops utilising sugar and switches to protein of which ketones are a by-product. Too many ketones in the blood is what causes the headachy, nauseous feeling leading to irritability. We meet with the doctors every 3-6 months to talk about the same old things and come away with no further insights than we had in the beginning. At one point they wanted to do a Lumbar Puncture to test if he had problems with the permeability of the blood brain glucose barrier. As theoretically Jacob had inherited the condition from me, they agreed to perform the test on me initially and only test Jacob if absolutely necessary. Unfortunately my results were inconclusive and Jacob will need to have the test himself as some point.
While all of this was going on in the first four years of Jacob’s life, we had moved Continents twice, lived in 4 different houses and if all that was not enough were at the point of breaking up as a family. Through all this, my little boy kept smiling and tugging at the heart strings of people from all walks of life. By this time, we had decided to move him from the Playcentre he had been attending since he was 2 years old to a Kindergarten where he was suddenly with a lot of other kids in his age group. At Playcentre we had noticed Jacob never liked coming in at morning tea time. He would much rather play in the sandpit by himself. I would have to take a biscuit and drink out to him if I wanted to feed him. He had other quirky behaviour like lining up all his Hot Wheels cars by colour instead of playing with them. Looking back I remember one instance when we were walking through the toy section of a large department store, Jacob had to stop and line up all the tricycles in a neat row before he could move on. But it was only that first term at Kindergarten that I started noticing just how different Jacob was to other children his age. The staff there had asked me to stay with him until he was settled, particularly because of his intense medical needs. So I had a unique opportunity to observe his behaviour. He preferred playing with the teachers instead of the children. Loud music or clapping disturbed him. He kept climbing into small boxes or plastic rubbish bins and closing the lid. He preferred to be under a table than sit on a chair like the other kids. He made funny noises from the back of his throat and did not like looking people in the eye. He frequently walked on tip toe and nothing we had done worked to get him to put his whole foot on the ground all the time.
Through all this, the Kindergarten teachers kept expressing their wonder at his command and comprehension of language and varied interests. He was an engaging child and his year book is filled with lots of special projects. One day a week he attended a special class for gifted preschoolers called Small Poppies and showed great interest in subjects like physics and chemistry. In contrast, at home we were finding it hard to get him to comply with simple instructions like coming to the bathroom to brush his teeth or sitting down at the table for a meal.Finally, 3 months before he turned 5, I asked my GP for help. Proven disciplining methods like taking his favourite toys away or sitting in the naughty corner did not work with him and we were at our wits end. Any anger expressed by the adults in frustration only served to exacerbate the situation and cause great distress to Jacob. Our GP referred us to a Psychiatrist who diagnosed Jacob with possible mild ADHD and possible mild Asperger’s Syndrome. I had already been suspecting something like that after reading Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders. Jacob already had allergies and asthma, so I had wondered if it was possible he also had ADHD and Autism. Jacob’s dad however was not prepared to accept the diagnosis. So I had him put through a Cognitive Skills Test. The results showed that Jacob was in the 99th percentile for Performance, i.e. how fast his brain processed information, and scored very high in reading and maths, but struggled in writing tasks. The Psychologist told us that he would need a full time Teacher’s Aide in the classroom and that it was critical we chose the right school for him from the start. She said “get it wrong and have him end up hating school and he will never reach his full potential”.
Jacob’s dad now agreed we could tell the school Jacob was enrolled at about his condition. We had already had several meetings with them about his other medical needs and were happy with his proposed care plan. But when we told them about the Asperger’s diagnosis, they accused us of withholding vital information from them and proposed we find a school with a special needs unit attached to it. At the end of a 20 minute school visit, where Jacob tried to run away from class several times, told the teacher she had no right to tell him what to do, hit two other children and apparently tried to destroy some work they had on display, the Vice-Principal walked in on him hitting me, a sign of his frustration. She grabbed him by the shoulders and shook him saying repeatedly “look at me”. For someone who professed to know all about Autism, it was apparent she did not know even the simple fact that an Autistic Child cannot look at you and listen at the same time because their brains get overloaded by two lots of sensory information. When we got home I had a call from her labeling Jacob “naughtiest child she had ever seen” and questioning my parenting skills.
Needless to say I decided then and there that he would not be attending that school. I rang up a good friend of mine, herself a teacher and the mother of a child with Asperger’s and asked for her help. We found out about a school where a similar child who had been rejected from 9 different schools, had finally been accepted and was thriving. We met with the Vice-Principal who said she had no problems accepting Jacob into that school, but due to Ministry of Education guidelines we had to be living in the School Zone. As there were only 300 children in the school, the school zone was a very small area and finding a house in it within 2 weeks was not an easy task. Providence had already brought a buyer for my existing house to my door and I had been sitting on the offer until a decision was made about Jacob’s schooling. I don’t know how, but I found us a house and managed to get the enrollment forms in on the last day of the term, two weeks after when Jacob was originally supposed to start school. True to their word, they accepted him and he started school on the 1st August 2011. On the 4th of February this year he will move to Year 2 along with the rest of the students from his year 1 class. He reads at the level of a eight and a half year old and his maths ability is at the same level. The one area he still struggles with is writing, but we are working on it.
I know this is the longest posting I have ever done. And if you got this far, I thank you for your patience. I decided to write this in response to some comments/observations made by friends recently. The first was a few months ago when a friend and I went into an Artisan Chocolatier in Mangawhai, north of Auckland. I looked around the shop and felt sad that I could not take any of it back for Jacob because of his allergies. When I asked my friend if he was going to buy anything for his three children, he said it was a waste as they would not know how to appreciate so fine a product. Instead he brought for some us to share. To him I wanted to say, “next time buy some for your kids just because you can, because I would give anything to be able to buy Jacob a special treat like that on impulse”. To the young friend who I gave a lift to recently, herself a mother of three girls, two of them still under two years of age; to answer your question, “did I ever even feel an impulse to wack Jacob one, when he was misbehaving?’, the answer is “no, never. How can I when I know what he has gone through in his short life. Yes, I do get angry, but physical punishment isn’t a consideration ever.” And lastly to the new friend who came into my life recently who was a bit freaked out after meeting Jacob for the first time, “Yes, Jacob can sometimes appear rude and even aggressive. He does strange things like squeal and lick people and yes it does look like he is an extremely naughty child and me a soft touch of a mum who panders to him excessively. I wish you had stuck around long enough to hear the back story as you liked to call it. In time, I had hoped you might have come to see him as quirky and full of hope as I see him through the eyes of love”.
The title of this post was a derivative of a book titled “Quirky, Yes – Hopeless, No by Cynthia La Brie Norall with Beth Wagner Brust about helping children with Asperger’s become more socially acceptable.