Out of Sight but Never out of Mind

I was anxious all day yesterday, wondering how Joshua was doing at school, as it is really hard to let go after the events of last weekend. The escort from his taxi to school helped first things by sending me a text that said “He’s certainly back on form, absolutely full of it!” once she had dropped him at school. That made me smile and allowed me to relax and to get through the morning without phoning school to check up on him. I was at school for a meeting at 2pm so I knew that if things had gone badly, class staff could seek me out and nobody greeted me with bad news.

My meeting overran slightly so when I came out of the meeting room, I could see Joshua waiting at reception with his TA, looking for me or wondering why he had not gone home as usual with everyone else. As he saw me, he ran down the corridor towards me and gave me a bear hug and I knew he was pleased to see me. Perhaps the school day had seemed an eternity for him too? But he had survived it in one piece and we walked happily to the car. I helped him into the front seat and then I folded the wheelchair away and loaded it and his bags into the boot.

As I got back into the drivers seat, I saw that Joshua was leaning forward, drooling and he was having a seizure! He was in that seizure for quite a long time as I reassured him, rubbed his leg and tried to hold his hand so that he knew that he was not alone. There was a gap in seizures so I set off, but then they came back with a vengeance and I needed to give him his rescue medication as he was fitting for ten minutes with no sign of relief for him. My heart sank as I gave him the potion in the car, and I could not help but think:  Here we Go again. As we waited for it to take effect, I reviewed what might have been the cause : over tiredness, excitement at being reunited, his chest infection, relief that school was over…? That really is a pointless exercise as I am unlikely to ever find out, but of course I was wondering if I sent him back to school too early? was it all too much too soon for him? I was reassured slightly when I finally got home and read his home/school diary as it did not read as though he struggled all day; it told me that he was thrilled to be back and that he greeted everyone with his ” I like you!” greeting. He had grabbed a nap at 2pm, so with hindsight perhaps a phased return, with just a morning in school, might have helped.

Once again self doubt creeps in as I cannot ask Joshua how he is feeling? Do you feel ready to go back to school or shall we leave it until Monday? He simply cannot express those ideas and so we, as his parents, have to be his voice and make these decisions for him. All I now know is that he can revert to pyjama days if that is what he needs this weekend, we only have one event in our social calendar today, he needs to be dressed and upright for an 18th birthday party tonight.

The McDonald’s Test

Joshua seemed to turn a corner yesterday, he was less sleepy and more lively during the day. I decided to apply the McDonalds test : I left work early again and told him that we were going out for  a late lunch and put his splints and boots on – he has not worn them for almost a week , so that was an event in itself. We wrapped him up in several layers against the cold and bundled him into the warm waiting car. He seemed pleased to be out but as the 25 minute drive wore on, he started to droop and we began to think that the fast food restaurant was not going to work its magic.

But as we pulled into the car park, he perked up shouting ” Donalds” at the top of his voice and he virtually dragged me into the building. He sat expectantly waiting while Dad placed the order and we awaited table service with our order. The restaurant was full of school children, having a post-school treat and Joshua waved and grinned at them until his Chicken Selects, fries and orange juice arrived. He immediately tucked into the fried chicken pieces, more enthusiastically than any meal that he has been offered at home and drank a full bottle of juice. Once all of the chicken had gone, he tucked into the fries.

Joshua passed the McDonalds test with flying colours; if it was sink or swim, he had won the swimming gala. He was very pleased with himself as we got back in the car and drove home again, so that he had minimal time outside in the cold air. The final part of the test was to see if he was worn out by this little road trip but he was happy and busy when he got home , so I warned him that this meant that he was going back to school today – he shook his head vigorously, laughing. But I sent a text to his taxi driver and escort to tell them that he was finally ready, unless he relapsed overnight. It has been a dilemma but this way, he can try just one day then recover over the weekend, rather than going back to five straight days of school. I really hope that I have not made the wrong choice and that is not something that I come to regret, but the signs seem to be good. if needs be, if he is floppy and tired at school, then I can collect him early, but I think he is ready to see the staff and his peers again and to leave the bubble that is his den for a while.  Fingers Crossed.

Onwards and upwards

Joshua was up in good time yesterday morning to have his breakfast downstairs, before getting dressed for his first day back at school. In the old days, I always felt that his school uniform was a useful cue to indicate that it was a school day, to distinguish it from hoidays and weekends. But now that Joshua is in sixth form, they do not wear uniform, so school days look much like any other day. So I kept on repeating to him that he was going back to school, as we got ready for the day ahead. Thankfully this time he did not utter “No way!” as he had doen earlier in the week so I took that as acceptance of the inevitable.

Despite this repitition, Joshua still looked surprised as he stepped outside to get into his taxi. The passenger assistant was the same as last year and he gave her a big grin, but it was a new vehicle and a different driver. He climbed into the car nonetheless and  pointed at the driver, asking him to respond in some way, so they will have to get to know each other over time. The escort said that Joshua kept a puzzled but happy expression on his face throughout the journey to school.

I was feeling pleased with myself that I had got him fed, medicated, dressed all in time for his 8.20 pick-up, but I had forgotten something critical : on my way to work, I suddenly remembered that I had omitted to send him with his emergency medication for the school nursing team! They give it back at the end of the summer term and so they would have no Midazolam at school for him and that would be a problem if he should start fitting. So I called my husband and asked him to take some into school , so that he would only be 30 minutes without it at the most. I then called the school nurses to tell them what I had forgotten and that it was already on its way. The  crisis was averted but I no longer felt quite so smug about how well I had done!

I was at work when Joshua got home from school, Yorkshire Grandma met him and said that he was happy but starving hungry. I was eager to see him when I got home from work and to read the home/school diary to see what kind of day he had had. It told me that he was happy to be back, being busy greeting everyone, which I can certainly picture. I also read that they had a ‘battle’ to get him to settle down to any work, but that he had enjoyed it once he had been persuaded, which I can also well-imagine. That sounds like a successful return to school to me and so from now on it is onwards and upwards and I just hope that the weeks do not fly by too quickly.

From A to B

Joshua returns to school today after around six weeks holiday  and I have been warning him for days now that it was about to happen. Yesterday morning, as I left home for work, our conversation went like this :

” Joshua I am going to work now”

” Bye Bye” with a big grin

” You will be going back to school tomorrow..this is the last day of your holidays!”

” No way!!!!” with another giggle

I wonder if he knew how appropriate his words were, if he meant them or if they just fitted accidentally. I like to think that he meant every word.

Pupils of Special Schools are transported by the Local Authority to their school, as they are unlikely to be on their doorstep like a mainstream school would be. Joshua travels around 30 minutes to his special school and he is  fortunate enough to be the only pupil from our area and so he travels solo in a taxi, rather than a mini bus, which would involve several pick ups and so, an earlier start potentially. Now that he is in 6th form, we have to make a contribution towards transport costs of £540 for the year, which began last year, which is a significant contribution  and I am not really sure why it arises in 6th form only, now that education until 19 is compulsory, whereas it used to be voluntary.

So this is a service that he is entitled to and that we pay a substantial amount of money for, so you would hope that it was organised professionally. As of this Monday, I had heard nothing about who would be transporting our son to school. I chased it with an email, to ask what the arrangements for this academic year might be? I heard back, on the same day at least, to say that there was no change from last year and that the contract was due to begin today.

So I texted last year’s driver and escort to check that they had had a good summer and to confirm that I would see them this morning. The escort replied immediately to say that while she was being maintained, we had in fact got a new female driver starting. I was reassured that, despite the last minute information to absorb, at least Joshua had some consistency in his passenger assistant. Yesterday, the day before the service is due to start, she texted again to warn me that the driver had changed already and that it would now be a new man. Now Joshus is not someone who is upset by change, but plenty of his peers are, and this last minute update could be enough to set them off badly for their return to school and I do not think that the Local Authority properly ever take this into account, as they are so blase about changes.

So wish us luck with the return to school, there will be a lot of nerves around today, amongst both pupils, parents and staff I suspect and a period of adjustment will be necessary. I personally am not anxious about Joshua settling back into school routine and I doubt that he is concerned either : he has been on such good form over the summer, that I think he is ready to go back to school and give the staff some grief, he is ready for some attention from a range of teaching assistants and staff and I am confident that he will soon get into his stride with both a new driver and a new teacher. I wish everyone good luck though, heres to another year!