Inspired by the fabulous #backtoschoolweek by Through Scarlett’s Eyes, I wanted to share Lucas’ week with you.
Lucas (13) attends a weekly boarding school for Visually Impaired Children. Even saying that makes me feel guilty and fills my throat with a lump, but it was, and is, the right decision.
Lucas has Septo-Optic Dysplasia, is a full-time Braillist, and he also has unique learning needs- he has Autistic Spectrum Disorder, a high IQ, but a very uneven cognitive profile- he is Gifted & talented musically, has IT skills that blow most adults out of the water, and has an edidetic memory for facts, yet cannot retain information read via Braille, and is operating at a Key Stage 2 level in maths, literacy and humanities. This made his relative success in mainstream up to year 7 a massive achievement, and remains a struggle even in a setting which caters for special needs.
However, his school has risen to the challenge, and mostly now gets it right! Lucas has a form group of six children – three of whom are also Braillists, and for the most part he learns at a Keystage 3 level, although he joins the Keystage 4 group to study Radio Technology, and even hosts his own show on VI Radio. He also has a teacher come in specially to teach him Braille Music Theory and harmony. He has TA support when it’s needed (he lacks Executive Fuctioning Skills ) but because the lessons are geared specifically to VI children, he doesn’t need a TA sat beside him providing a commentary and interpretation of lessons the way he did in mainstream. He also gets ‘pushed’ in his areas of difficulty with expertise and knowledge which we struggle, and his mainstream school certainly struggled with: he has Sensory Integration Disorder so needs an OT with experience to provide a Sensory Diet, PE teachers who know how to present sports in an accessible way, books in Braille available all the time, science lessons that demonstrate chemical reactions in a non-visual way, maths teachers who have resources immediately available to physically teach concepts, speech therapists, physio’s, and rather than having a Qualified Teacher for the Visually Impaired come in once a week and advise TA’s and teachers, every one if his teachers is a ‘QTVI’.
It isn’t easy. That’s an understatement really. He gets a taxi and a medically trained escort arrive at home at 9.00 on a Monday morning which takes him 2 hours to his school, and he returns at 3.00 on a Friday afternoon. He’s still my baby. Almost as tall as me, but my baby nevertheless. The week leading up to him going away was pretty heart breaking. He kept getting snappy and aggressive, he kept dissolving into tears about “leaving you guys”, and asking how he could forget about going away- to which the only answer really was distraction. Sunday evening, we finalised his packing (very stressful!), and he just couldn’t hold it together. Got him in the shower- heard him sobbing loudly, and Isla (7) and I were on the landing outside sobbing just as loudly, getting it out of the way so he couldn’t hear us. Bedtime came- tucked him up, reassured him hundreds of times that yes this bit is hard, but that transition is always the hardest, he loves ‘his place’ when he’s there, we can ‘FaceTime’ as much as he wants, and if he ever needs us, we will get in the car and drive down immediately to see him. Isla then launched onto him and wouldn’t let go, eventually to be calmed by cuddling one of his teddies sprayed with his aftershave.
Next morning- school run from hell- dropping Iain at the station, coralling dog, Lucas and Isla into the car (both sobbing/shouting alternately), drop Isla at school- have to have her pulled off me screaming by teacher and TA (a whole new blog post needed!), back home to wait for Lu’s taxi. Repeatedly double-checking packing for the numerous Meds, gifts to unwrap the first 2 evenings, ‘patronus’ card made by Isla, ‘fidgets‘, four Bop-It’s, electronic devices, Chargers, etc.
Escort arrived and after a big squeeze, Lucas visibly ‘pulled himself together’ and set off. I fell apart a bit after he’d gone! Later that evening Lucas emailed to say he didn’t feel like Facetime as was a bit sad, but that he we ok, so on Tuesday we had a brilliant FaceTime, I was beaming ear-to-ear, and he seemed to have totally settled back in!Yesterday he appeared in his taxi smiling, tired and constipated (gut motility issues are exacerbated when he’s away), but happy, settled, confident and already a tiny bit more grown up. He is giggling at ‘in jokes’ between him and his friends, chatting about his new tutor, telling us about an evening trip to The Moors, and full of beans. When questioned, he has given his first week back 7/10 overall, which I am more than happy with!
Deciding on a special school setting, especially when it means he boards was immensely difficult. We trust not only his education, but his care, both physically (he has life-threatening health conditions), but emotionally to other people. Even harder as we spent the first 12 years of his life having to take total control- finding our own doctors, writing care plans, fighting educational provision, and so on. However, when Lucas sobbed yet again after a too-fast-paced day at mainstream that he was “fed up of being the only blind one” we felt we had little choice. The school worked hard with us on a phased transition over an entire school year, the care staff listened to our endless lists of what he likes and doesn’t like, the medical staff liasled directly with our team at Gt Ormond street, and our boy has gone from strength to strength.
He comes back demanding ‘boy spray’ (deodorant), using swear words, arguing that his bedtime should be later- he’s challenging boundaries in a 13-year old ways instead of being compliant and too-Young! He talks with delight about trips into town and other outings he wouldn’t dream of consenting to with us, and is actually telling us about his lessons for the first time.
It hasn’t been without its teething problems, of course, and there are things we are working on changing, but the decision we made has been, for us, absolutely the right one- Lucas fits there, it’s where he ‘belongs’, and whilst we miss him dreadfully, and he misses us a little (he’s a teenager!), he comes home less stressed, more grown up, and happier.
For any parents pondering whether boarding is a possibility- my advice is to check it out, think with your head not just your heart, and believe that if you find the right place, it can work!
Love Sarah (looking forward to a whole weekend cuddling my somewhat reluctant big boy!)