Category Archives: Social Life

The First Half-Term

COLLEGE

We had another glorious Autumn day to travel to college to pick Harry up for half-term and had timed our arrival so that we could see him out on the football pitch.

When we got there we found the pitch and scanned the various players but none of them was Harry. We double-checked but he wasn’t there. Where could he be? Simultaneously we spotted movement in the woods near the brook. Harry. Collecting sticks. We watched for a while, wondering if he had wandered off from football training but he was dressed normally (albeit without a coat in a chilly 11C), no-one seemed to have noticed his absence and there was no-one supervising. The wood is close to a visitors’ car park and Harry was wandering awfully close to the brook.

We drove on and parked near to Harry’s accommodation and quickly went to retrieve him. He was nonplussed and didn’t seem to be expecting us. I took hold of his hand and it was freezing cold. This was not an auspicious start.

In the week before half-term staff had phoned to say that a new room had become available and they had offered it to Harry. It was larger and en-suite, although still shared. We were keen to check out this new accommodation and it was indeed a lot better than his original room. It is much brighter with more room to move around and a large en-suite shower room.

Harry’s counsellor’s office is directly opposite his room and we told her how we had found him on our arrival. She was mortified and swore that Harry normally attended football training suitably dressed: in fact, complete football kit plus his coat!

We gathered together his belongings, noticing that his shampoo seemed unused (!) In fact, his hair was unkempt and his breath smelled bad but we kept this to ourselves. The journey home was slow with rush hour traffic but brightened by listening to Harry singing along to songs on the radio. Close to home we decided to pick up fish and chips – Harry’s favourite.

HALF-TERM ESSENTIALS

A haircut was high on the list of essential things to do, swiftly followed by a visit to see Grandma. There was also a timely trip to the dentist. Dad had discovered that the batteries had run low on Harry’s electric toothbrush. Maybe this was the reason for his bad breath? The dentist confirmed that Harry’s teeth were OK but his gums were suffering from lack of brushing.

HALF-TERM HIGHLIGHTS

Then it was time to enjoy spending time with Harry. He went to the movies with his Dad, caught up with Strictly and Downton (he’s a big fan of both) and the three of us went to a local beer/music festival – Pocktoberfest – which Harry thoroughly enjoyed: 3 halves of beer and a lot of enjoyment from watching the performances, particularly Hope & Social, Lumberjack Cowboy Heartbreak Trucking Co and Glenn Tilbrook.

Harry absorbed by the music

Harry absorbed by the music

Harry seemed to thoroughly enjoy his week at home and we certainly enjoyed spending time with him. We were on the lookout for signs of change. His Dad thought he’d grown taller; I noticed that he’d remembered his manners: lots of ‘please’ and ‘thank you’. It took him a while to get into the swing of being at home again and he was resistant to hugs and kisses for a while but that soon wore off.

He hasn’t been able to tell us much about what he’d been doing at college but staff told us that we should receive a report at Christmas so hopefully we’ll learn a bit more then. We know that he has been making the most of his weekends and going to lots of shows at the regional theatres around college. I estimate that it’s going to cost around £1000 a year to keep him in trip and pocket money at this rate! But it’s good to know that he’s getting out and about.

BACK TO COLLEGE

We made sure that Harry knew that this was a brief visit home and that he would be going back to college. The day before we were due to take him back he said gruffly “Don’t want to go back to college.” It was a quick journey back and we were able to settle him back into his accommodation (only one “Don’t want you to go”). We had another brief word with his counsellor and mentioned that his shampoo seemed unused and that he needed to be more vigilant with his teeth brushing. She made a note for staff and also said that there was a trip to the cinema to see Thor later in the week and that seemed to lift Harry’s spirits.

We were amazed at how quickly that initial five weeks had sped by. And it won’t be long before he’s home for four weeks at Christmas.

I go into a bit of a low when we drop him back at college and it takes me a while to get back on an even keel again. We all miss him dreadfully and I could never have imagined what a difference his absence makes to our daily lives. But gradually we are adjusting.

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There Can Be Only One

Monday 16th September 2013. C-Day. College Day. We had had the whole weekend to pack but there were still some last-minute additions to the bags: a 4″ figure of David Tennant as Dr Who, an empty bubble bath container in the shape of The Stig from Top Gear, Harry’s nightlight. We were all quiet and a little subdued. Grandma told me that she’d had a chat with him that morning and Harry didn’t really understand what was happening and that just made everything worse.

We set off at 8am, dropping Harry’s sister at school on the way. I had to remind her to say goodbye to her brother because she wouldn’t be seeing him for five weeks. Typical teenagers’ forgetfulness. And then it was just the three of us. We left Yorkshire in glorious sunshine, encountering showers and then more sunshine as we neared college. A perfect metaphor for the day: sunshine & showers; bitter-sweet.

A knot the size of a grapefruit formed in my stomach (and it wasn’t the bacon sandwich eaten half-heartedly at the motorway service station). Time to act: put on a smile, adopt positive body-language and come up with cheery chat. Having registered our arrival we joined the human conveyor-belt of interviews with various members of staff.

Travel

The travel co-ordinator asked about our plans for half-terms and holidays. “It is college policy to promote the independence of students and wherever possible we encourage students to make use of the transport services provided by us.” Harry could travel home by coach or train with groups of other students accompanied by staff as far as Manchester. We decided this was an aspect of independent travel training we would like to work towards but felt that October was too soon and elected to go and collect him instead. We got the impression this was a rarity. Not for the first time I felt like I was being an over-protective parent. I made a mental note to download the application forms for a Disabled Persons Railcard.

Health

Next it was on to the college nurse. All her questions were directed at Harry but he was unable to answer the majority of them. He was able to acknowledge that his address was correct but not his date of birth. And he often forgets how old he is. We handed over Harry’s proof of NHS prescription charge exemption (a copy of his HC2 Certificate for full help with health costs) and a form agreeing to him being given an anaesthetic if necessary. We explained that Harry’s ear infection had recurred over the weekend (great timing) and that he would need help administering the prescription spray. We tried to remember the numerous minor operations he had as a child. I gave her the Occupational Therapy report produced after Harry had left school and far too late to be included in the LDA.

Harry went off with the medical staff to be weighed and measured: 5′ 10″, 9st 2lbs, BP 124/77. No medications, no allergies, no dietary conditions. “An easy one!”

Education

Our next stop was with the curriculum co-ordinator. He took Harry’s photo (not a good one, H refusing to look at the camera directly) and spent more time discussing how student photos might be used in promotional material than in Harry’s timetable. He hadn’t received the form which showed that Harry’s preference was for vocational modules in Hospitality and Retail and so had produced a timetable which took in H&R but also aspects of Land Based Studies (Practical Skills and Horticulture), Catering Studies and Arts, Media & Business Studies. I panicked a bit because Harry has an aversion to getting dirty and doesn’t like animals other than our own pets. But it’s only for a couple of weeks until Harry’s skills and preferences can be determined. And ultimately one area of study has to be picked because “study programmes are being introduced by the DfE from September 2013. The programmes will form part of the curriculum offer. The aim is to maximise the potential of young people to progress in education or employment.” (College literature)

Social Life

He double-checked which sports and social activities Harry wanted to include in his timetable: darts, football (H not sure), gym (not sure), horseriding (limited availability), swimming (H isn’t keen but dad thought it was a good idea and had packed his swimming trunks). From the list available I can imagine he would love Out & About Xtra Club (Monday 5.15-7.15pm), Music Club (Tuesday 5.15-6.15pm), Drama & Karaoke Club (Wednesday 5.30-6.30pm), Disco (Wednesday & Saturday) and Walking Club (every other Sunday 2-4pm). But will he be made aware that they are available?

Speech and Language Therapy

The therapist explained that at one time she would have seen every college student. Due to cutbacks she can now see only those students who have SaLT indicated in their assessments. She didn’t have a report from Harry’s SaLT at school because they hadn’t produced one. He had only been getting input during his last year at school but I am glad that I persevered in pushing for it to resume since it will undoubtedly help him. I promised to send her his last report from 2009, along with a report from his class teachers in 2012 so that she would at least have something.

Finance

Here we handed over Harry’s medical card and a form allowing him to be registered with the college doctor. They needed his Unique Learner/Pupil Number which I found on one of his SEN Review reports. And his NI number. They needed to know which benefits the student receives. And if your child is taking their own TV to college they need a TV licence. We decided it would be better for H to watch TV in the communal lounge: more chance of socialising that way.

How much personal allowance should Harry be given every week? How long is a piece of string? Harry has a wallet which I load up with cash when he gets taken out on trips but otherwise he’s like the Queen: he doesn’t need money. The finance officer mentioned that he might like to buy a soft drink, sweets or a magazine. I’d rather he didn’t. I explained that Harry has to use prescription toothpaste high in fluoride in order to control the extra plaque that builds up because he is unable to brush his teeth thoroughly. As for magazines, he loves his dad’s old Empire mags but he can’t read them, he just looks at the pictures picking out familiar characters/actors. So, for Harry to spend his allowance on magazines would be a bit of a waste. Wouldn’t it?

The highlight of college weekends is the trips out: musicals in Manchester, Birmingham, Wolverhampton; castles; museums; football matches; zoos; train trips. There is a lot to choose from. If asked, Harry would probably say ‘yes’ to everything. He would love the theatre trips but hate the shopping trips and museums. I circled the trips I thought Harry would enjoy between now and the Christmas holidays and the cost came to about £350. Looks like we’ll be topping up the allowance pot before too long.

However, I was a little worried by the talk of “rounding up” students to go on undersubscribed trips and I’ll be checking the statement that comes through from college with this in mind. (Controlling again. Can’t help it).

We were exhausted, it was 1.45pm and long past Harry’s (and our) lunchtime. We took ourselves off to one of the on-site cafes and ate lunch in quiet contemplation.

Harry’s Room

After lunch it was time to find his room and unpack. Deep breath. Staff seemed unsure about which was Harry’s room. On closer inspection each door had a name label on in small type. I’d like to have seen a photograph, at least 4″ x 6″, especially for students who can’t read.

The room was small, dark and sparsely furnished. 2 single beds, 2 sinks, 2 wardrobes, 2 bedside tables. It seemed that Harry would be sharing a room. As he was first to arrive he had the pick of the beds. We picked the one nearest the window as it seemed a bit brighter. We put up the posters we had brought and they cheered his half of the room up: Skyfall, Marvel comic covers and Spiderman. We struggled to plug in the extension lead for the bedside lamp. There would have been no room for a TV and none for his digital photo frame. I plugged in his nightlight. A narrow shelf for toiletries. I unwrapped a new bottle of mouthwash and encouraged him to use it. The Marvel comic duvet set stayed in its packaging and was put into the wardrobe but now I wish I had taken the time to put it on. Harry helped to unpack his clothes and with space at a premium, decided to put his football kit on top of the wardrobe. Let’s hope it doesn’t stay there for the rest of term.

I wanted to check that the Care Plan, which I had taken a great deal of time over, had made its way to the staff. Again, it was not to hand and I worried that they would not have read that Harry needs to be shown where the toilets are, that he can’t tell the time or use a phone without assistance. My lip wobbled for the first time.

There was nothing left for us to do. I hugged him and said it was time for mum and dad to go.

Don’t want you to go.

It won’t be long. We’ll see you soon.

Don’t want you to go.

Five weeks and then it’s half-term.

Don’t want you to go.

Oh Harry, it’ll go really quickly, you’ll see.

Don’t want you to go.

I know. But you’ll make lots of new friends and learn lots of new skills.

Don’t want you to go.

I couldn’t think what else to say to him. My eyes were filling with tears and I was determined not to cry in front of him.

Well mum and dad can’t stay here, there’s not enough room.

Don’t want you to go.

I know. I know. But we’ve got to go.

Don’t want you to go.

We put on our coats and picked up the empty bags. One of the other student’s parents were also on the verge of leaving and I saw his mum wiping her eyes. He had settled down to watch TV in the lounge and we encouraged Harry to do the same. A last reminder to the staff that Harry hadn’t worked out where the toilet was in relation to his room. Or which was his room. (Get those photographs up). A last goodbye and we walked away.

Only when we were safely back in the car could we let out all the pent-up emotion. We felt wretched and thoroughly miserable. The drive home was punctuated by tears and the occasional grasp of one another’s hands in supposed reassurance.

There Can Be Only One… First Day at College. The rest have to get easier.

If You Don’t Ask, You Don’t Get

It’s been a while since my last post… I hope you’ve all had a good summer break. When I have a bit more time (and the photos) I’ll let you know how Harry got on in respite care.

This is just a quick post to remind you that, “If you don’t ask, you don’t get.” I’ve used this old adage numeorus times when advising others but put it to effect this morning on Harry’s behalf.

Just before the summer break a representative of Action For Children told me about an Independence Support group which runs every Tuesday afternoon in the town where Harry attends school. It sounded ideal: a tea-time group attended by young people whom Harry would know and who are given the opportunity – with support – to budget for, plan menus, shop for, and prepare their own meals. I was keen for Harry to get a place and the representative promised to contact Harry’s Transitions Social Care Co-Ordinator (I know, I know).

Today I received written confirmation that Harry had been offered a place in the group. My delight was tinged with trepidation: in the past Harry has had to fund his own transport from social activities. However, in this instance I felt this was much more than a social group because of the focus on gaining independence skills. So, before accepting the place, I phoned the TSCC and queried whether they would provide transport. She asked whether Harry was in receipt of DLA (he is) and stated that this was meant to fund such transport. I made it clear that I was not happy about this, especially because of the value attached to the acquisition of independence skills and reminded her that it would only be for a year, during term-time. She said that this was the message they were told to put across to people but promised to ‘have a word’ with her manager…

Less than an hour later she phoned back, said that she had spoken to her manager and stated that, in view of the distance Harry lives from the group they would be prepared to fund his transport in this instance. I was stunned! I had just been considering whether to get a taxi to collect Harry and bring him home…

So, my advice is: always ask, sometimes you get!

The Sixth Form Prom in Pictures

I wanted this to be a quick picture post about Harry’s Sixth Form Prom night. They say every picture tells a story and I think that is especially so in this instance.

There are three classes in Harry’s sixth form, with about ten students per class. All students are invited, along with their families, to a sit-down meal followed by a disco. Attendance at the meal is optional and people can just come along for a dance if they want. This suits those students who have difficulties around eating in public.

DJ Ashley finds a fan

The highlight of the evening for the students is undoubtedly the dancing.

“You look good on the dance floor”

Like last year, Harry couldn’t keep off the dance floor.

Take your partners for the tango!

The more confident boys like asking their teachers to dance.

Grace gets a dance partner

The teachers weren’t the only ones getting asked to dance.

Even the shy ones get up to dance

These guys are best friends and both leave school this year. J finds big social occasions very difficult and his teachers were amazed that he even turned up. A very big deal.

L has fun with a balloon sword

L won this year’s prize for the leaver who most clearly demonstrated the school’s ethos. He had a great time celebrating his achievement at the prom.

Everyone takes to the floor

The evening was scheduled to end at 10pm but dancing went on until 11pm.

A lovely way to end the school year and say goodbye to the class of 2012.

Music is a Universal Balm

On Friday night Harry and his dad went to a gig. A proper outdoors, lots-of-people gig. Most teenagers have probably been through this rite of passage with or without their parents long before reaching the age of 18 but Harry is not most teenagers.

Harry loves music. Almost as much as he loves TV. He knows the words to songs that we have never heard of, from contemporary pop songs to middle-of-the-road classics from the 1950s. It helps that he spends a lot of time on the road. Harry’s taxi run to school is roughly 45 minutes each way with the radio tuned in to BBC Radio 2. He knows (and sings along to) all the jingles that get played between 7.45-8.30am and 3.30-4.15pm. He will also sing along to TV commercials. So, really, what is the point in me muting the ‘Webuyanycar.com’ advert if Harry is going to sing it anyway?

So, when we had a letter come home from school saying that they were planning a trip to take Harry’s class to see Will Young perform at Dalby Forest we jumped at the chance for him to go.

The full cost of the tickets was £35.00 but the school subsidised part of the ticket price so that Harry’s ticket cost £20. Staff were going to accompany the students on a one-to-one basis to act as carers unless parents wanted to go… My husband will take any chance to go to a ‘proper’ gig and so he decided to attend as Harry’s carer and his ticket was free. How cool is that?

The idea was that students would travel from school to the venue and have a picnic tea in the forest. As things turned out, this aspect of the trip was cancelled due to staff shortages so instead, kitted out in wellies and waterproofs, ‘the boys’ travelled from home together. The venue – Dalby Forest – is only a 30 minute drive from home but the queue to get into the forest was long and slow-moving.

Having parked the car, the queue to get into the concert area was also pretty horrendous. Harry isn’t too bad with the concept of queueing but there is always a chance – more so in a forest – that he will start to scout around for sticks. He didn’t. Perhaps the amount of people around put him off because he held on tightly to his dad’s hand until they had passed through the security check.

We had done plenty of research before they set off, so they made their way to the Disabled Stand, an area set aside for wheelchair users and their carers. There was plenty of room for Harry to sit down or stand up and dance as the mood took him. At one point he was really jigging about and my husband was worried he was bouncing about too much and disturbing others around him. He was just about to put out a restraining hand when the young lady sitting next to him prevented him. She put her hand on his arm and said, “It’s alright. Leave him be.” How lovely.

Harry at the Will Young gig

The support act was Nerina Pallot, an artist my husband had never heard of, although he recognised several of her songs once he heard them. Harry knew many more of them and happily sang along.

At the interval food was procured. Canadian BBQ steak sandwiches, lemonade and coca cola which Harry wolfed down and ended up with sticky fingers – that’s rock ‘n’ roll!

When Will Young appeared the place really came to life. Two elderly ladies suddenly became extremely animated and were up on their feet, singing and swaying along to the music. Harry needed no encouragement to join in and was soon completely absorbed. So much so that he was oblivious to a nasty fight between a man and a woman which suddenly started up, only feet away from where he was standing.

Fours hours later the boys were home and buzzing with tales of their night out. Harry’s verdict was: “It was fantastic!” And my husband was vowing to attend more outdoor concerts with him.

The value of music as a form of therapy cannot be underestimated. I am always taken aback by the effect it has on Harry. It brings him to life in a way that few others things do. He seems suffused with joy and it brings a smile to his face which is transfiguring.

Music is a moral law. It gives a soul to the universe, wings to the mind, flight to the imagination, a charm to sadness, and life to everything. It is the essence of order, and leads to all that is good, just and beautiful, of which it is the invisible, but nevertheless dazzling, passionate, and eternal form (Plato).  (Wordsworth Dictionary of Musical Quotations, 1991, p. 45).

(I found this quote on the Voices website and hope they don’t mind me using it here).

A ‘Fairly’ Successful Father’s Day

I had inadvertently arranged to visit the respite home on Father’s Day. Fortunately my husband didn’t mind at all and thought we might be able to work it in to a ‘day out’. All we needed was for the weather to improve…

The forecast seemed good and the day started sunny. Someone on Twitter posted that it was Open Farm Sunday and I thought we could build that into our day out, along with a bit of geocaching.

We started geocaching last year. It’s a great way of getting the kids out into the countryside and is a bit like a guided treasure hunt. You can download an app onto your smartphone and use it to find hidden caches all over the world. Even though our kids are older teenagers they still get excited about being the one to find the treasure (as do we)!

The visit to Humble Bee Farm was a great success. We spotted some birds of prey and Harry was immediately transported to the world of Harry Potter and his owl Hedwig! We listened to the guy chatting about the birds and letting visitors hold them. We had done this once before, quite a few years ago, but Harry had been quite nervous. This time he actually said he wanted to hold one…

Harry holding Merlin

We all took turns at holding Merlin, a male European Eagle Owl with massive talons and gorgeous clear orange-amber eyes like marbles. He weighed 3.5 lbs which soon starts to tell on an outstretched arm…

There was a farmer’s market where Dad tasted cheese and bought duck sausages; a hog roast where we shared pork, stuffing and apple sauce butties and the local microbrewery, Wold Top, was selling delicious beer which demanded sampling.

Harry’s obsession for picking up sticks had started almost as soon as we entered the farm though. We managed to persuade him to put them down long enuogh for him to have his photo taken in vintage and modern tractors and in a combine harvester.

Farmer Harry

We sampled local ice-cream from Mr Moo’s and were astonished that Harry chose rhubarb & ginger over vanilla. His handling of ice-creams can be a bit hit-and-miss (literally): he tends to lick them all from one side, ignoring the drips from the opposite side and then gets into a real mess. But he managed really well with some prompting from us.

After two hours it was time to head off back to where the car was parked at the top of a hill. Harry had started throwing sticks into the path of on-coming cars so Dad asked him to leave them at the entrance to the farm. This tactic works 50% of the time when Harry can be persuaded that the sticks should be left in a neat pile where they could be found again if necessary. Not today! Cue a rather public tantrum. Fortunately, Dad managed to steer Harry towards the car without too much fuss or name-calling (by Harry)!

It was at this stage we realised we hadn’t brought our wet wipes or antibacterial hand wash with us: standard kit when out & about with toddlers, but also with Harry because he picks up so much stuff off the ground. Should we go all the way back to the farm toilet block? Dad came up trumps again, improvising with bottled water & tissues!

Time for a couple of geocaches and then we were off to the respite home: a first visit for Harry and the rest of the family.

No need for trepidation though. It had been agreed that we would visit when the Manager (I’ll call her Sarah) was on duty. She had shown a particular interest in taking responsibility for Harry when he stayed and greeted us all by name at the door, even the dog! We had tea in the garden which Harry said was, “Just like at home”. A good start.

At first he wouldn’t look at Sarah whilst she gently asked him short questions about what he’d done today, about the school trip to Keswick, about his likes and dislikes. Harry referred all his answers to his Dad, only glancing out of the corner of his eye at Sarah occasionally.

Eventually she asked Harry if he would like to have a look around the home and he agreed to go off with her on his own. Another good sign. Ten minutes later they were back. Harry had picked out his bedroom: one with a view of the garden and the road. Sarah had taught him the door code to access the rooms upstairs and he had remembered it. Very impressive. I asked him whether he wanted to show his Dad and his sister the room and off they all trouped. Very, very impressive.

In all we spent about an hour and a half at the home but in truth I knew within fifteen minutes that Harry would settle there and feel at home. Sarah had even collected feathers on her way in to work, knowing that, along with sticks, Harry loves collecting them. She thought they might be able to do some craft work with them when he goes to stay.

Needless to say, by the time we left, she had won Harry over. And us.

A very successful Father’s Day as it turned out.

Towards A Social Life and Independent Living

We had a visit from a worker from action for children today. Harry had been referred to them via Adult Services who are responsible for funding some of their activities.

I hadn’t heard of action for children before and when I googled the website and found that the charity supported neglected and vulnerable children & young people I was a little perturbed. How could they help Harry?

The lady who came brought two thick A4 folders stuffed with photographs of young people enjoying themselves on trips. Harry was a little reluctant to tear himself away from his Sherlock Holmes DVD to come downstairs to meet someone new. However, the photos were a great ice-breaker and Harry recognised lots of people from school.

She explained that the service is aimed at young people aged 18-25 with learning disabilities and those on the autistic spectrum. I was particularly interested in their Independence Support service which aims to help young people to use public transport, find jobs, access further education, develop independence skills. All of which sound perfect for Harry.

They also run an after-school Tea Time Group on Tuesday evenings which encourages young people to prepare and cook a meal for themselves and others. Those who attend are involved in choosing healthy options for menu ideas, budgeting and shopping. This is the sort of meaningful activity that I keep banging on about. Having the opportunity to be fully involved in an activity from start to finish on a regular basis is a really useful life skill.

My worry is that Adult Services will not agree to fund Harry’s transport back home, even though he will not be making use of his school taxi on that night. This is what happened with the School Youth Club and we ended up paying £30 for a taxi to bring Harry home at the end of the session. That’s a substantial amount of money on a monthly basis: almost half of his Disability Living Allowance.

Independence Support also extends to helping young people find accommodation. The project has its own supported flats and young people living in the development are supported up to the age of 26 to learn all aspects of independent living. At 26 they are supported to find other accommodation in the community, having gained the skills required to live independently with limited or no support at all. What a thought!

Harry is a little way off that but it is good to know that there are organisations out there which will be able to help him when he gets to that stage. Of course, such organisations will only be around provided their funding isn’t cut any more than it already has been. This particular branch has seen its workforce halved in recent years.

In the meantime the charity also provides a Summer Activity Scheme which involves taking groups of young people out and about. They particularly like to bring together those who have been away at residential colleges and encouraging them to socialise together. This seems like a particularly good idea since many young people will have got to know one another from the age of 11 upwards and it provides an excellent opportunity to catch up.

By the end of the meeting I was feeling very encouraged. The activities and support offered seem to be appropriate for Harry and I could see how he would gain skills, improve his confidence and have opportunities to make new friends.

And now, there are a few more forms to fill in…