As I have been a mother now for nearly 15 years, I thought I was quite attuned and 'in touch' with my children, and their needs and wants, however I was abruptly reminded the other day, that I can never know it all, and sometimes I should not just 'think' I know my children inside and out, but actually ask them more often how they feel.
As we moved recently into a new area, we have changed 'professionals' who are involved with the children who have special needs. We have had one such person visit on several occasions, to assess the level of need of each child, and myself, (as parents and legal guardians can get worn down and desperate at times too).
On the last visit, which was for her to be able to complete her assessment and submit it to a panel of 'experts' (note my usual sarcasm at that word), she had some questions for the children. Despite her seeing on her last visits that J is not capable of answering a question, as he will reply to you with the very question you have asked (echolalia), she asked again if she could talk to him. It makes me chuckle seeing him being his normal self, and not giving her the answers she had hoped for. She can see, and this is something that is noted by so many people, that J is an extremely happy young man. Yes, he has some days where he is more stompy on the stairs, getting stressed about the noise levels of his younger brothers, or the fact I will not allow him any more cola, but that I put down to hormones and him being a teenager, but in his whole self, he is contented and happy. He sings his songs ( repetitive ones he's sung for years), laughs, smiles, and is a laid back, chilled out boy.
When she spoke to the other two, she asked them if they wanted to go into a different room, away from me, to allow them the freedom to talk about how they feel, and without them worrying they might upset me, but both boys replied "no".
I was pleased they felt comfortable enough to do this with me, as I have always maintained to them that how they feel about having a brother with such a high level of special need is not wrong. Their feelings are valid. It is hard. It can be draining. It is restrictive. However, it is not bad or wrong to feel this way at times.
The youngest one, W, who has a lower lever of special need, but is still quite demanding in his behaviours, spoke first, and he spoke generally about J sometimes going on and on about wanting cola.
It was O, who is nearly 11, who opened up candidly about his feelings.
Most of the things he spoke about, I was aware of. Things such as how he feels people stare at us when we are out, and point or make out they are talking about us. How we have to plan trips to the playground around the less 'peak' times, so that it is not too busy, and J can get on to a swing, and not have to stand around getting stressed. He feels embarrassed that he has brothers who have special needs, and he doesn't like to talk about them at his school - I believe he can be just himself, O, at school. Not O "who has the brothers with special needs."
Then he was asked what he doesn't like the most about J, and his response has resonated through me for the last 24 hours, mainly because I didn't think it affected him, and now I feel guilty that I should have known...
J has, for the last 6 weeks or so, been making himself sick. It is something he used to do around 8 years ago, whereby he would steal a 2 litre carton of milk, drink it all as fast as he could, and then vomit it back up, whilst laughing. At that point, I had to hide food and drink from him, as he would eat until he made himself vomit. It was disgusting. He'd do it in the garden, on the carpets, in sinks, everywhere. We looked into Prader Willi syndrome ( PWSA link), as a GP believed his over eating was linked, and the vomiting was a symptom of that, but it was a dead end. It faded away within a few months, and I thought (or rather hoped) that was the end of it forever.
So, to hear him being sick in the toilet that first time, nearly two months ago, I thought he had a bug or virus.
But he was laughing about it. Whenever he has been sick through a virus, he is curled up and has a fever.
Over the next few nights, I would hear him being sick in the toilet, followed by lots of laughter and jolly chattering.
I tried to follow what a psychologist had told me to do before, which was to ignore, but after the first week of nightly vomiting, I had to intervene. I told him "no" when I heard him begin the coughing that he does to start it off, and he'd vacate the toilet, but, I cannot be on watch 24/7, and sure enough I'd hear him doing it again, usually when I was tied up with one of the other children.
As we are reaching the end of the Easter school holiday, J has had the days as well as the nights to make himself sick. He has resorted to drinking a lot of water from the tap to help him, as I have had food and drink locked away again in our new kitchen (solely for the purpose of not allowing J to steal food - despite him not having PWS and the vomiting stopping the first time 8 years ago, J would still steal as much food as he could, and proceed to eat it all as fast as he could, so I had locks in the previous house to stop this, and had to do the same again in our new house.)
His forced vomiting has not abated, and I am getting increasingly worried about the impact on his health.
He is not a slim boy for starters, which helps I suppose by him not becoming desperately weak and thin within days, but he is losing nutrients and the stomach acid cannot be good for his teeth and throat.
We have a long wait to see the psychologist, and the GP cannot offer much help, as this is not in the realms of offering counselling or simply explaining to him the damage he is potentially causing to his body.
I will be talking to his school when term begins, as I require them to monitor him during the time he is in their care. I am not asking for someone to shadow him all day, merely that an adult hover around the toilets when he uses them after lunch or snack time, and to listen out. Vomiting is not a quiet affair, and so the person doesn't need to be in that close of a proximity to hear if he is making himself sick. It is a few minutes out of a school day that I will be asking them to assist me. As it is a special needs school, I hope I am not met with reticence or hesitation.
I am not a medical professional, but I have tried to rule out any reason for the vomiting - blockage? Allergy? Indigestion from the rapid eating? Sensitivity of the stomach lining?
I have monitored him. Made notes in my phone. I am inclined to believe it is a sensory issue. As he has to urinate the second he feels anything in his bladder, I am persuaded towards linking this to his stomach - he feels it full, and enjoys emptying it out. Discovering that vomiting can excavate his stomach contents within seconds has become a habit. A habit that he is enjoying.
I just have to put a time limit on this behaviour, before I have to demand more intervention from the professionals, but quite what they can suggest or implement is something I am sceptical about.
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So, to go back to O, and what he divulged, he said he hated hearing J making himself sick every day and night. It made him feel sick himself, and angry that he could hear J laughing loudly after each episode.
I never thought about the impact on the other two, and for that I felt wounded by my own lack of motherly instinct and care. I sat there, winded almost by his admission. I added this failure of my own doing to the growing list I have stored in my head.
I realise that I have to remember all of the children can be affected by something I (wrongly) presumed wouldn't do so.
It is hard for most people, including myself, to understand just how he gains enjoyment from this kind of activity, as for us, vomiting occurs from painful viral infections, tainted food or drink, or from excessive alcohol consumption. It is not pleasant and is not enjoyable. I myself have emetophobia ( useful info here ) and cannot understand just how and why he wants to do this, but I have to accept it and try and work with him in helping him to stop.
As for the gorging on food, he still tries all day, at any opportunity, to grab food and run. He stole one of his brother's Easter Eggs, in the speed of sound. We have to think constantly about hiding food from him (although J is like a blood hound and can sniff out the merest crumb of food from three miles away), locking it away, and watching him like a hawk when food is out for cooking purposes. This behaviour has been present for years and years. It never ceases. But as I said above, PWS has been ruled out before, as he does not present with any other classic sign or symptom.
I tend to explain it in this way - J's trait of stealing food and eating it as fast as possible is similar to a wild animal or even out caveman ancestry - he doesn't know when his next meal is coming, and he believes if he leaves any for even the shortest second, it will be taken from him, so he grabs what he sees and runs.
As we have two Labradors, I also make light of their tendency to behave as if they are just one meal away from total starvation - there is never a meal shortage in this family, but the dogs and J would lead you to believe otherwise!
If you have any help or hints, please contact me via the link on the main page of this blog, or via my Twitter page. Thank you!
