It has been a really busy couple of weeks and a couple of weeks distinctly lacking in any sleep which made it feel even busier. Thurston has started seeing his new physiotherapist recently and has had a few sessions now. I was disappointed to find out that he has severe hypermobility in his hips as well as his other joints which is giving him referred pain down his legs. The problem is that the only way to help with the pain is to build up the muscle strength to support the ligaments. Building up muscle strength involves lots of exercise which can make the pain worse in the short term. The new Children’s Development Centre where we have the physio sessions actually has its’ own soft play room which has turned out to be a godsend because even when Thurston won’t cooperate with the activities set out by his therapist, the soft play setting gives him exercise without him even realising it! Unfortunately, Thurston is very uncooperative with his therapist. She tries really hard with him, but he just won’t listen to a word she says! This week’s appointment was the trickiest, eventually she gave up and left the room to book another appointment. I got the baby ready to go and when we all turned back towards Thurston, he was stark naked in the ballpit as if it was a Jacuzzi, reading a school book called “The Bully”.
As well as Physiotherapy, Thurston also had an Occupational Therapy assessment. He actually did like the therapist instantly, but seemed to mostly like making fun of her! He enjoyed reading her name from her NHS badge and then referring to her by her full name for the rest of the session! He made her set up crash mats so that he could bounce on a gym ball safely then declared he doesn’t like balls. He made himself a bed out of beanbags and fake-snored very loudly. When he did take part in the required exercises, he managed to baffle the OT. We have known for a while now that Thurston favours his left hand, but his writing style is very awkward and appears to be uncomfortable. The therapist explained that he uses his left hand to grasp the pencil but using a palmar grip, then he supports the pencil with his right hand using a perfect pincer grip. However, his control is coming from the left hand which seems to suggest that he is definitely left handed! However, when we asked him to use scissors (which he did in a lethal haphazard manner), he went straight for his right hand!!! The therapist has arranged another assessment but in school to get a better idea of his abilities. She said that she had never seen another child use this technique so she is puzzled! She also pointed out how hypermobile his elbows are so that is another area for us to work on!
One of the things that has been suggested to help with these hypermobility/low muscle tone issues is trampolining. This weekend, we set up our new trampoline in the back garden and it was an instant hit with Thurston. Unfortunately for his brothers, he is not very generous with sharing it and it is already causing a lot of conflict and (loud) disagreements. Thurston has been on the trampoline 90% of his free time since it was assembled and even took 3 trampolining breaks during dinner last night!
Last week we had a TAF (Team Around the Family) meeting at Thurston’s school. It lasted 2 hours and 12 professionals from different agencies attended the meeting. I used to find these meetings quite intimidating, but I’m finally getting the hang of them now. The key is to have a clear idea of what you want to get from each professional, ask lots (even too many) questions and don’t agree to any help that you are not comfortable with. Our group of professionals that we are currently working with are really friendly and easy to talk to which makes the whole thing so much easier. Alex and I still find it so surreal that all these people attend a meeting that is solely arranged for our little Thurston, and actually there are at least 6 more professionals involved with his care that also could have attended. It’s so nice to feel that we are surrounded by people who want to help us because the last year or so we have felt somewhat stranded!
The outcomes of the meeting were very positive.
– We have a school nursing appointment set up to talk about the possibility of toilet training and to have a general check up.
– He has been referred to the Bladder & Bowel team at the hospital to assist with his toilet training, or any issues he might have in the bladder and bowel department.
– An appointment is being set up for Thurston at a specialist feeding clinic at the Evelina Childrens’ Hospital in London in the Neurosciences department.
– I’ve been offered a place on a course about behaviour at the childrens’ centre which is 4 sessions and has a free crèche!
– We are on the waiting list for the Earlybird Plus course run by the National Autistic Society which unfortunately is currently 18 months long!
– He is continuing with blocks of speech and language and physiotherapy.
As well as that I’ve arranged a dietician appointment and a podiatry appointment so plenty to keep us busy!!
During the appointment, Indigo suddenly came out in a nasty rash all over her body and was very unwell. Luckily there were 3 nurses there who checked her over, and on the way home we stopped by the GP and the poor thing had a nasty virus. On top of teething with 5 new teeth, poor old Indigo is not having the best time!
I’m so pleased that Thurston is getting access to all the help he needs at the moment and I’m looking forward to seeing what progress he makes in the near future, but I really must buy a calendar!!