This is the last blog so I will try and round up what we thought was going to happen to what actually happened. But first onto the stresses of the month, Joshua.
Joshua had a lovely and calm Christmas but on returning to school his stress levels went through the roof. We felt really sorry for him as he sat waiting for his school taxi as white as a sheet, coughing and getting sick every day during the first week back to school. When he arrived to school the taxi driver wasn't happy as Joshua had been sick on the mini-bus which meant the driver had to spend 60 minutes each day cleaning up. During school Joshua was being sick throughout the day, and at the end of the day sick before leaving. Once he arrived home he was happy and started to relax.
We kept his routine very simple the first week in order to provide him with stability, which worked at home. School rang a couple of times wondering if it was medical but we've seen this before and explained to them that because his understanding is improving the world was becoming more complex and confusing. Joshua's reaction, which I'm sure is common regardless of having special needs, was to become very anxious at what lay ahead. School were at a loss and surprisingly said they hadn't come across this before. We made enquires to get help but were told there was a long waiting list for any psychological help. So, we rang around, looked on the web, spoke to someone from a support group we found on the web, ordered a book and decided to work out what to do as every professional seemed to be at a loss.
With Tracy being an experienced nursery nurse, focusing on special needs in addition to having been through a lot with Joshua and Sally, we both knew what we should do. The answer is to ignore the challenging behaviour, reward good behaviour and have patience. It has worked for us at home over the years. Speaking to a number of professionals they confirmed we were doing everything to the book. So, why were school and the school taxi having such difficulties I think the answer is the reaction they were displaying when he was sick, they made a big issue of it. Now Joshua, being a little boy, loves reactions to his actions, whether the behaviour is good or bad. This is pretty normal as I've seen it when I was a Scout leader some years ago and Tracy has seen it numerous times in her work. Joshua was playing the school like a piano.
The following week Joshua and Sally were due at the respite centre over Monday night, which unfortunately was a mistake as he was very sick when he realised the school taxi wasn't taking him home. We had a phone call from concerned staff but managed to leave Joshua there, both feeling very guilty but knew it was for the best. We should have taken him ourselves. The week progressed as the previous one but school did say they were following our advice and it was slowly working. I would give it another week and it should all be in the past.
But life isn't simple and the week ended with the taxi driver refusing to take him to/from school by Friday. I fully sympathise with the driver who had five other children on the taxi, didn't particularly like the smell of sick and didn't enjoy spending 60 minutes cleaning up each day. He reluctantly dropped Joshua off on Friday to say farewell and apologise. For the first time ever the transport section of the council were fantastic and arranged for another taxi to take Joshua to school, on Monday, on a one to one basis and the understanding that they were prepared for the sickness. On the Monday we briefed the taxi carer on how to react and they have been fantastic. Joshua has improved tremendously in the taxi with a few minor stresses.
But back to school. Today (5th Feb) I had a phone call from school at 1:30pm saying that Joshua's sickness is becoming a major problem. The angle they approached the topic was that they were concerned he wasn't getting enough food or drink so needs medical assessment. Joshua eats twice as much as at home so wasn't concerned about his food intake. I explained we have gone down this route before, with the GP providing no help and the hospital consultant not wanting to see him before his pre-booked appointment at the end of February. I explained why we felt it was psychological, explained how it only occurred in unplanned or stressful situations, explained how it starts as a cough when he starts getting stressed and will eventually lead to being sick if the situation doesn't change. It is a downward spiral which he just can't get out of with out lots of love and attention and a safe environment. This is why we don't really see it at home because he feels safe and familiar with everything around him. Joshua's ideal world would be to have his mum, dad and sister with him at all times and to do the same thing every day.
Changing school has had a delayed reaction and if anything this behaviour was predictable. Well, just to comply with the request and the school nurse wanting to ring the assessment ward at the hospital we agreed to take him for assessment. today. As predicted the doctors didn't find anything and have written a letter stressing this point. So we are now at the situation where school are struggling even though we thought this was all sorted. However, changing the taxi driver and carer has improved the trip to school, one positive point. Our next course of action is to see if the school will speak to his old school who are familiar to Joshua's little challenges. Let's hope they are willing to take advice. With a little patience and perseverance we will get over this episode, as long as everyone is dealing with it the same manor. I really do question how many professionals have a broad enough experience to handle what I see as an easy problem with plenty of documented evidence in how to treat challenging behaviour. As a backup Tracy has also attended a challenging behaviour course which we arranged through the ABC Group. They confirmed we were doing everything correctly.
Whilst I am still on Joshua we have had some progress on his knee. The first point is that his flexible ankles have contributed to the dislocated patella. It's obvious once you link the association. If his tendons running on each side of his patella are not at equal tension then the patella will be pushed to one side, which is exactly what is occurring. This was discovered once he wore shoe splints which keep his ankles in the correct position. After only a few weeks his knee was dislocating less, even though Joshua still enjoys fiddling with it and dislocating at will. The appointment with the specialist confirmed this and has suggested they operate on his feet. They want to insert an insole under his heel to avoid wearing splints, which Joshua doesn't like, as well as loosen one of his tendons and possibly tightening the other. It all sounds straight forward but just over twelve of these operations have been performed locally, with two leaving the child in pain and the insole having to be removed. With a special needs child this would be more awkward as we can't explain to Joshua what we will be doing, so he may just refuse to walk. This would be a major step back.
This puts us in a dilemma of having the operation or don't have it. The consequence of both options is that it may improve his walking, which will also translate to less knee, hip and back problems throughout his life. Or, don't have it and face a life time of problems. We will probably take the risk of having the operation as we don't want to put Joshua through pain, operations, mobility problems when he is older. The operation will mean Joshua will be in plaster for six weeks, so Tracy and I had better get to the gym to strengthen our already painful backs.
On a positive side Joshua has had some really enjoyable weekends with his family. He is getting on really well with his sister and they love a good cuddle wrestle. This involves Joshua trying to eat Sally's T-shirt whilst Sally puts Joshua in a headlock and pulls his ears. Typical brother and sister...