Back in December 2017, I wrote about our struggles to get the right support for our Grandson affectionately known as Li Li.

Finding Li Li

The intervening year has continued to be a struggle with the education system. We had meetings with the CAMH’s team, with Educational Psychologists and Doctors. It was concluded that his problems related to his Sensory Processing Disorder and Learning Disabilities and we were basically placed back into the care of the Education System.

He became very unhappy at school. We thought that it was due to the fact he was becoming increasingly aware of the widening learning gap between himself and his peers. Also as his younger twin brothers progressed, he started to become more aggressive towards them. Assuming this was pure frustration we pursued our attempts for him to read to us and do his homework, to no avail.

Feeling that he possibly wasn’t getting the support he needed in the classroom, we decided to take a look at a local specialist school. We were so impressed. The children had all sorts of special educational needs, but all appeared to be very happy, interacting with teachers and support workers.

We felt it offered everything our little man needed. The class sizes were very small, and each followed the same daily routine. The days activities pinned in a timeline to the wall, so the children knew exactly what to expect throughout the day.  Chill out zones, should the children become anxious or overwhelmed, a fabulous outdoor play area, which was only ever used by a maximum of two classes at any one time. A minimum of two teaching assistants in each classroom supporting the teacher. It seemed to offer everything he needed and we felt he would thrive in the environment.

The head teacher spent over an hour with us and explained how the school worked to support both children and parents and advised that we would need to arrange an emergency review of his Educational Health Care Plan, to request a change of school. We duly arranged this in April, and were exasperated by the hoops we had to jump through. As a family we had to write a descriptive of our concerns with his current situation, what we felt he needed to thrive and how a change of school would improve his welfare. The school had to do the same, and bearing in mind they were advising us that he was now two years behind his peers, the education system was failing him. We also included reports from several different health care professionals. The paperwork then had to be submitted to East Sussex County Council for review.

Time passed and the school chased ESCC, until finally one week before the summer holidays the school received the decision. Our request had been declined! ESCC advised that he should receive full time support in his base class rather than spending the afternoons at the nurture group. He should have a teaching assistant with him all day and spend playtimes on the playground with his peers not in the indoor, quieter playroom.

We were not of the opinion that these measures would improve life at school for him, but you cant dismiss ideas without giving them a chance. We have sat back for the first term of the new school year, to allow the school to put the new guidelines into practice. However we have not seen any improvements, his aggression after a day at school is getting worse and his learning has not improved. This is all the more noticeable as the twins are progressing in leaps and bounds. He still refuses to read to us or do any of his homework. He still makes silly noises at the dining table or when playing with his siblings and often withdraws to the safety of his bedroom.

We therefore requested a meeting in January with his Special Educational Needs Coordinator and his class teacher, to discuss appealing the ESCC decision.

Life outside of the school week and during holidays has however been a great year for him. He has learned to swim and is now very confident in the water. As he doesn’t always participate in PE lessons at school, swimming has been good exercise for him. It has built a bigger bond with his Dad as they try to go swimming at least two evenings a week.

He enjoys cooking, and although not the tidiest chef, his “speciality” is making toad in the hole with Granddad. He will now try different foods and despite still using his fingers to eat, is enjoying a much more varied diet. He does have expensive taste though, as his new favourite food is steak!!

Having attained the ripe old age of 10, he is fortunately no longer inclined to strip to his pants as soon as he walks in the door. He loves to dance and has quite good rhythm, and has attempted, unsuccessfully, to teach us oldies how to twerk and floss.

His greatest achievement though has been learning to ride his bike. Physiotherapists advised that he was unlikely to be able to do it. Initially he was so scared he would fall off and with his SPD he struggled with his balance. One of the twins mastered the art of cycling and with a lot or persuasion, we finally got him to attempt to ride one of the smaller bikes. He tried a few times across the garden lawn and gradually grew in confidence. Within a week he was away. It took another week to gain his balance on his larger bike, but now he adores riding and he is a different little boy when he’s flying along, the wind in his face and the sun on his back.

He still has good and bad days at home, however he is learning lots of new things and his confidence in his own abilities is growing. He is more willing to attempt things. During our meeting at school we somehow needed to find a way to transfer this learning ability to his life in the classroom.

The meeting was very positive. The County Council are launching a new SEN initiative in Hastings, specifically for children with Sensory Processing Disorder. His class teacher has been on a training day and has already done an assessment on our little man. She was quite shocked how high his sensory levels are and it has given her a better understanding of his needs. However he is just one of 30+ children, whose needs she has to understand.

A review by the Educational Psychologist with Li Li in the classroom, has been requested by the school. We also had an Occupational Therapist home visit booked for the half term holidays to assess his sensory needs. Unfortunately there is little more she can do to help him apart from advise of new sensory aids to help him through the day. She is to send a copy of her report to the school as she previously advised them to purchase some of these aids.

We also feel some of his mood swings are due to dehydration and have asked the school to ensure he is drinking during the day. We know he avoids drinking as he finds using the school toilets at break times very overwhelming, but he does have dispensation to use the toilets during lesson times. He also has ear defenders he can wear in class if the noise becomes unbearable. However he has a growing sense that he is “different” from his peers and resists using aids at school because it makes him stand out.

It was felt that an appeal to move him to the specialist school would not work, and although he is slipping further behind his peers, it was decided to focus on which school he should attend when he leaves primary. Although we were disappointed with this, he is however now attending classes with similar ability children, outside of his base class, where they are focusing on very basic maths and English, to try to help the children grasp some understanding of these topics.

Subsequent to the meeting, he started getting bullied, for the second time this school year. Although the teaching staff worked swiftly to put an end to it, his confidence took another dip. So despite the positivity of our meeting, we have decided to push again for a move to the specialist school. However after reading an article in the local paper, we aren’t holding out much hope 😩

We are documenting his behaviour after school compared to his behaviour at weekends and holidays to give more weight to our argument.

The annual review of his EHC Plan is booked for the end of March. We are hopeful that the professional assessment reports will be in by then. For our part we have visited the local specialist secondary school, in preparation for the review.

Once again the surroundings seemed perfect for him. There are cooking lessons every week, design and technology lessons and coding lessons on computers. The teacher showing us around the specialist school advised us that children arriving at the start of year 7 are often 3-4 years behind in their learning. Some are even unable to read when they arrive. I appreciate there is a finite amount of cash, but we are failing these vulnerable children by insisting they remain in mainstream school. 😢. She did show us how, through the care and determination of the staff, a lot of their children have turned their learning around, passed GCSEs and moved on to further education or into employment.

He has a further year at primary school and as things stand, he may possibly also be 3 1/2 – 4 years behind his peers by the end of it, but we are a little more positive for his future, in that the staff are now more aware of his sensory needs, he is getting additional help with his maths and English and the local sensory initiative will hopefully help his needs, plus the positivity of our senior school visit.

The children in his base class are wonderful. They have grown up with him and understand his little ways, tolerate any outbursts in class, and look out for him.

Life for him will always be a challenge, but he has a large family and lots of friends, who love and understand his quirkiness. We will continue to fight our hardest for him, to get all the additional help he needs, to grow in confidence and understanding of the busy, loud, scary world around him.