Long time, No see

I have had a very prolonged break from blogging. The last blog entry was written when Thurston started primary school. He is halfway through his 2nd year there now, and lots has changed for him and for our family as a whole. Firstly, there are more of us! We had our 4th and final baby in May 2013, a little girl named Indigo Tempest. We are absolutely over the moon with her, she really is delightful. We have recently moved to a new house in a new town which has come with equal parts stresses and positive changes. Our middle son Zeke has moved from infants to junior school, so he and our 10 year old, Louis, are now at the same school again.


Now that we are somewhat settled in our new home, I have finally found a little bit of time to write again. When I first began to write this blog, it was because I didn’t have anywhere else to explain my feelings or thoughts regarding Thurston’s Autism and other special needs. I found myself disagreeing with many aspects of the medical and educational advice and so writing a blog helped me to feel confident about my choices. Now that he is in his 2nd year of school, we seem to have hit another fairly rocky patch with Thurston.


When Thurston was a pre-schooler, he was under the care of the Early Support team. He was regularly seen by professionals from Speech and Language, Occupational Therapy, Physiotherapy as well as being invited to group sessions to learn Makaton or learn new skills that other children acquire naturally. What nobody warned me about was that as soon as the child starts school, all the help and support is shifted to helping the school and there is no emphasis on helping the family in any way.

Our main issue with Thurston is that in contrast to the sweet angelic toddler he used to be, he has become very frustrated by his difficulty to communicate his needs and feelings, which inevitably has resulted in him lashing out and becoming aggressive. I’m so devastated by this development because when he was being diagnosed, I would console myself that ‘at least’ he was not aggressive or angry. I think that as you get older with Autism, life can become much more daunting and frustrating. When you are a toddler, all your wants and needs are taken care of without you having to ask at all. At school and out of the home in general, once you are a little bit older, you need to be able to communicate a certain amount of information independently from your parents or carers which seems to have created quite a huge problem for Thurston to overcome.


As far as I can tell, as soon as Thurston is upset or in need, he is immediately angry that the person taking care of him does not automatically understand what needs to be done. Therefore, he will lash out and ‘disappear’ into himself. Once he has turned this way, it is near impossible to get through to him to try and find a solution. It is as though he has disappeared and there is no one behind his eyes at all.


Occasionally he will not lash out, but his comforting behaviours can be just as distressing in some ways. He will seek refuge in reciting entire ‘infomercials’ (his current favourite is the NutriBullet!), or acting out each face in order of all the Little Miss and Mr Men books. Anything where he knows what is coming next seems to help him enormously and make him feel safe again.

Speech & Language have reviewed his progress at school and will set tasks with his 1:1 to help him. However, I used to attend all of his Speech Therapy appointments from when he was 6 months old until he was 4 and I can’t help but feel as though I’m out of the loop. I would appreciate if the therapists were to fill me in on what I could be doing at home with him, or any advice that might help our family life.


Thurston has a range of other medical issues including feeding difficulties (he is still predominantly fed on a specialist formula from the Dietician), low muscle tone and hypermobile joints. He is also not toilet trained in any way and has insoles from a Podiatrist for problems with his feet. Before he started school he had multiple appointments and lots of help from many different people and clinics.

It came as a bit of a surprise that once you are out of Early Support in this area, your care is not automatically taken up with the community therapists and I recently discovered that Thurston had simply been taken off the list for the OT, Physio and Dietician. This means we have been struggling unnecessarily with a range of problems. I approached the Inclusion Officer at Thurston’s school and told her that I felt as though I had no idea what to do for Thurston any more and that I needed help. That is a hard thing to say out loud in these circumstances because I worry that they will be judgemental of me and think that I can’t cope with him. She instantly arranged a Team around the Family meeting which involved multiple agencies and was very helpful and for the 1st time in almost 2 years, I am starting to feel a bit more in control. The school nurses have referred him to the bladder and bowel team at the hospital for an assessment with his constipation and possible toilet training. They have also referred him to a specialist feeding clinic at the Evelina Children’s Hospital in London. The local special needs school has put us on the waiting list for a Sleep Workshop and gave us information on help for disabled children when we go to Euro Disney in June. Louis and Zeke’s school have assigned them a counsellor and a play therapist to give them the opportunity to speak about anything that may be bothering them. The Speech and Language therapist is going to visit Thurston more regularly and have a weekly appointment at school with him. We have a July appointment with the Dietician and we are seeing the Physio and the OT over the next fortnight.


All this was as a result of me asking for help. I find it quite unsettling that disabled children can miss out on the help they need simply because the agencies fail to pass on information to one another. I didn’t realise that there was any help on offer and it is a real shame that the families have to actively seek the help that they need. However, now that I’ve taken that step, I am looking forward to getting all of my concerns off my chest at these upcoming appointments, and hopefully getting Thurston and our whole family back on track!


One thought on “Long time, No see

  1. The main issue with supporting children with SEN and other disabilities along with the families is the lack of communication between agencies and schools. This will only be solved with more funding and cohesive centralised strategies. More investment in this area is needed desperately and your blog is a great way to raise awareness. Good luck with these upcoming appointments and I hope the support continues, Elsa x

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