The new chair I mentioned in an early post finally arrived on Monday 25th April. We spent the day trying to set it up getting all the various supports and bits in the right place for Max himself. It wasn’t quite as easy or straightforward as one might think but we sort of got there in the end. We are waiting for one of his Occupational Therapists to come and set it up. Max has two Occupational Therapists, one is a paediatric OT and the other is part of Social Services and is in charge of authorising and ordering any equipment. So far no-one has been to see the new chair and we do have a few issues with it. The most important being that it will rock from side to side and forward and back, loosening all the bolts. Max thinks this is terribly funny and uses it as a passtime and also to move along the floor!
On Wednesday 27th April we had a (regular) catch-up session with Max’s consultant paediatrician, Dr McGowan. It was a very good meeting, which unfortunately Justin could not attend due to his workload. Hilary, the physiotherapist, also joined us as soon as she was free from her other appointment. Very unusually, Jemma and I had managed to arrive at the appointment early and as the people before us were late, we went straight in. Dr McGowan hasn’t seen Max since last summer; we usually have 6 monthly appointments but as Luca was due only weeks before she kindly suggested that we delay the appointment for an extra 3 months. So much has happened in the intervening 9 months that Dr McGowan was really quite taken aback. In fact, I remember going to see her and Max was still in his old jeep pushchair!
Needless to say she was very impressed with him and for once he did perform just a little for her. Once we had established what he had learnt to do since our last visit, we moved on to the question of schools. Dr McGowan asked us if we had any thoughts on it and I admitted that other than a cursory visit at Greenmede School (which lends part of its building to Small Steps) we hadn’t seen any others, neither did we know what was available. Both Dr McGowan and Hilary admitted that although a few months ago they would have thought Greenmede the right choice for Max, they both now felt that he was probably more, or nearly more, advanced than the majority of pupils there and that he would probably benefit more from being in a more challenging environment. They both suggested Bedelsford School, which is in Kingston – out of borough so that could cause a few challenges – but a worthy contender.
Also at the meeting Hilary mentioned how Max still has this huge wheelchair that we were supplied with and that we had now been using in preference a very basic umbrella pushchair. She mentioned to Dr McGowan that we had had a re-assessment by wheelchair services and that they had refused to offer us anything else. So, with Dr McGowan’s support, Hilary filled out a request form for a Maclaren Major buggy. This is just like an umbrella buggy but it is taller and wider to fit an older child and can cope with the added weight of an older child, or in Max’s case the added weight of his suction machine. In the afternoon we took the new car, aka “the tank”, for a bit of a service as it had lost all power. We didn’t get the car back until after the long weekend and being without it made us really aware of how much it has made life easier for us.
On the Thursday we went back to Small Steps for an assessment of Max’s abilities to see which group he would fit into best. They decided that he would fit in either with the Monday afternoon group or the Wednesday morning group. In order to decide between them we have decided to attend one session with each group and then see. However during our assessment we tried to sit Max on a stool, which he did very competently. At the time he was still pitching backwards a lot but as he was being distracted he didn’t really notice what he was doing. It was very cute.
Having been to both groups now, the best group is probably the Wednesday morning group and this doesn’t work brilliantly for us because Max is never at his best early in the morning, the traffic getting anywhere at that time is horrendous, which is never a good start for the adult concerned, and lastly Max has started attending a fortnightly playgroup at Christopher’s which is also on a Wednesday morning. There are actually on 6 weeks of the term left so I think that he will attend all but one Small Steps session and got to “Little Chasers”, the playgroup at Christopher’s at least once.
On Sunday 1st May we all went off to Granny’s for lunch but without the dogs and with the minimum equipment necessary as we had to go in Justin’s car. We all had a lovely day and even had a birthday cake for Daddy – homemade by Granny of course! The following week was a whirlwind of Speech and Language Therapist, Portage and visits to the hairdresser. On Thursday was Justin’s office Re:fresh event which culminates in a supper and awards ceremony in the evening. A rota of nurses was organised so that I could get myself prepared (including a trip to the hairdresser) and attend the evening entertainment. We came home after a successful event at around 3 am. Luca had been very good for Verna and taken one of his first ever bottles of milk and settled back to sleep like an angel. It gave us much hope for the future, but the very next night we had trouble!
The following morning we had organised to see Bedelsford School. It wasn’t great timing, but their open day had been the previous day (which was also election day and the Re:fresh day) and they invited us for the Friday. I did not feel I could say no, but having gone to bed at around 4.30 am getting up the following morning was difficult. I have been unable to drink caffeinated coffee since we discovered a few months back that it was disrupting Luca’s sleeping patterns and I have been very good and stuck to decaffeinated coffee and even decaffeinated tea. That particular morning, not only was I very tired and we were expected at Bedelsford for 9.30 am, but we were very short of decaffeinated coffee so I had a few normal lattes. That night Luca could not sleep and we were up all night and finally both fell into an exhausted sleep at around 5 am. I have tried having just a little coffee again a few time since and every time Luca falls asleep well enough at 7.30 pm, but when he wakes for his 11 pm feed he can’t go back to sleep again. Oh for the days when he is entirely bottle fed and I can enjoy my coffees once again!
Bedelsford School was all that we could hope for. It is extremely difficult to visit a school as parents for the first time and have any clue as to what you are looking for or at, it is even harder when the school is a special needs school. As this was the first school we went to see we felt very much at a loss. Bedelsford isn’t a large school, and like most special needs schools the largest part of their budget is spent on staff as they need to have a high ratio of staff to children. In the nursery class, which starts at age 3, the ratio is five teachers to eight pupils. Everyone seemed extremely friendly and the school seems to be a good fit for Max.
On Sunday 8th May we went to Chez Bruce restaurant for lunch with Tommy and Lizzy to celebrate Justin’s and Lizzy’s birthdays which are both on 3rd May. Max and Luca did not join us for lunch itself but they got plenty of attention before and after lunch. On 9th May Max and I met up with NNU room mate Ned and his Mummy, Kirsty. It was lovely to catch up. When we came back to the house after lunch the children played on the floor and Max suddenly learnt what “sharing toys” was all about and he was having none of it! We had one tantrum after another as Ned wondered around the room. It was most amusing although I’m sure Max wouldn’t agree. It is a very important lesson that Max will have to learn but until now he has never really had to share anything before. On 11th May, Jemma and Max went down to Christopher’s for “Little Chasers” and had a really, really fun time. It is so important for him to start socialising and Little Chasers is good because it is more of a fun environment rather than hard work, like Small Steps.
In the afternoon a chap from Social Services came to see us in response to a letter of complaint that we had sent. He was very nice and we spent a couple of hours discussing a lot of issues. Unfortunately, as with all these things no matter how much people appreciate the situation, they are bound but so many rules and regulations that they can rarely actually achieve anything for any individual case. Also, Max is an unusual case as his medical needs are so high and therefore is very much a test case for a lot of these things and change is very slow to happen.
On Thursday Lizzy came to see us and in the afternoon we took the children to Battersea Park Zoo. Max decided to have a bit of a tantrum at that point and hardly took any notice of where we were at all! It was a very windy day and it is most probably the wind which bothered him and he got more upset as time went on. He only seemed to calm down when we started walking back to the car, so he was either pleased the wind was now behind us or he was happy to be getting out of there! On Friday we had a lovely day with Granny who came to up to London and in the afternoon we managed to make a very quick trip to the Brush and Bisque-it where Luca’s foot print and Max’s hand print were placed on a little mug for Granny. It should be quite spectacular when it is glazed.
On Monday Max attended his first Small Steps session and although he cried a lot of the time, he did really well. On Tuesday, Justin and I visited Greenmead School. We met Angela Laxton, the current Head Teacher, who was really nice. She is retiring though this summer. Greenmead School caters mainly for children whose physical disabilities are so severe that their cognitive ability is difficult to determine. Although the school is extremely good, Justin and I feel that Max needs very strong and positive role models to encourage him to learn and that his physical and cognitive ability would be very much in top group at this school.
As you can see from all the photos, Max’s sitting has really come a long way and he is now started bum-shuffling a little if you hold his hands. At Small Steps he is learning to crawl (and practising with Denise) as well as learning to get from lying to sitting and from sitting to standing.