I reckon I’m quite an easy-going girl, easy to get along with. My husband would probably disagree with the easy-going bit and my friend Paul would definitely disagree that I’m easy to get along with. Aside from that, I like to think I’m friendly and approachable! The last few years, lots of people have come into our lives to help with Thurston that otherwise we wouldn’t have met, with very mixed results.
When we started out on the path of Drs, Health Visitors, therapists etc., I naively assumed that anyone who is involved in working with kids, especially disabled kids, must have fairly good people-skills. For the most part, this is true but there have certainly been some bad eggs!
When Thurston was diagnosed with ASD, we were immediately assigned with a Key Worker. Her job description was to help us with anything that wasn’t medical. For example, application forms, co-ordinating appointments, liaising with therapists etc. That day, it instantly seemed like a fantastic idea. Having battled to get some help by myself for over a year, and chasing up secretaries and appointments, I was relieved to hand over to someone else. I had a niggling doubt though. There was a definite conflict of personalities. The Key Worker (who I shall re-name Marge!) was incredibly negative about everything. She had no optimism about the future and was very opinionated about every aspect of Thurston’s care. Looking back, I was probably bewildered at the time of meeting Marge. I didn’t have any knowledge of Autism and here was someone who seemed to have all the answers. As the weeks went on, I dreaded her coming to the house. She was increasingly judgemental and started to comment on my parenting skills and wasn’t complimentary about them. One day when she came to visit, she commented on Thurston’s inappropriate behaviour which was in fact him lifting his t-shirt up and showing her his belly button. At 2 years old!! How dare he?!
Alex and I attended the Earlybird course which is run by the National Autistic Society. It lasted 12 weeks and was in a children’s centre. We booked our older kids into breakfast club (which they loved!) and dropped Thurston off with my sister every Thursday then drove to Herne Bay and learnt all about Autism. We learned different approaches, therapies, school options. The 2 girls who ran the course were amazing, they were so positive and answered all of our questions. Alex was practically devastated when the course finished (I imagine this was more to do with the lovely blonde girls serving him tea & biscuits than anything educational). During this time we didn’t see much of Marge as we directed all of our questions at the Earlybird team and got much better responses.
When the Earlybird course finished and we ended up at a few appointments where Marge was involved, I started to realise how unprofessional and downright wrong she was about the way she worked with us. Amongst other things, she blamed the size of my house for Thurston’s sleep issues, she said that we were wrong to send him to a mainstream nursery and he would end up “excluded by inclusion” and most bafflingly of all, she claimed that Alex’s prolapsed disc was a result of stress from Thurston’s diagnosis!!! A discectomy and spinal fusion later and she is still sticking by her shocking ridiculous theory. I now know that it is possible to be happy and positive about life with a disabled child and so I finally felt brave enough at the end of last year after a mortifying “Team around the child” meeting to ‘fire’ Madge for good. Naturally, I made Alex make the phonecall as I am still being a chicken about dumping people but she was told in no uncertain terms “don’t call us, we’ll call you!”. And we haven’t!!
Me and Thurston have been to a lot of Therapy sessions in the last few years – Physiotherapy, Speech Therapy, Messy Play sessions, Occupational Therapy, Mini Movement groups, Makaton classes and Pre-Walking groups. He has worked with at least 16 therapists. The majority of them have been helpful and the classes have been enjoyable and really helped us. However, his latest Speech Therapist is a different story altogether. Thurston LOVES her. He has a genuine puppydog crush on her. He even bats his eyelashes when he says her name (which for blog purposes will be Sophie). Everyone who comes to her sessions with me raves about her, the sessions are so much fun and Thurston has made a surprising amount of progress since starting with Sophie considering how uncooperative he has been at Speech Therapy in the past. Sophie makes an effort to work out how Thurston learns best and she adapts the tasks to get him interested. She also liaises with the nursery Speech Therapist without me even asking. that way everyone is on the same page. Thurston has just finished his latest block of Therapy with Sophie, and asks every morning if he will see her that day!
Everything was going really well until last Thursday when Sophie told us she was being relocated. I couldn’t even pretend not to be upset!! I asked where she was going and she said Canterbury. Well, that is only a 40 minute drive from me so I said to Sophie that we were happy to come to Canterbury for Thurston’s appointments. Alex is still receiving Physio in Canterbury so it’s really no big deal. Besides, when you’ve found a Therapist your 3 year old is so enamoured with that he will sit on a chair and do 20 minutes of verbs, you are happy to travel anywhere!! Sophie seemed thrilled that we wanted to stay with her as she is similarly enamoured with Thurston. Her managers however, are less pleased as it would mean moving all of Thurstons’s care to Canterbury and would have an impact on their budget (but that is a whole other blog!!). I was pleased at the thought of moving all his care, I fancy a change and starting somewhere new. Plus, Canterbury has much better cafe options for post-therapy coffee and chatting!
Anyway, the battle of the managers is currently still ongoing. Apparently this problem has never come up before so no one has a policy on it! I won’t go into detail of all the people Thurston and I have ‘fired’ as it makes me sound a bit difficult! For now though, we are stalking our Speech Therapist!
thanks for reading