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.

And Then There Were Three

It’s been two weeks since we took Harry to college and I’ve had to cut down on the amount of milk I buy. And bananas. And yoghurts. I’ve put the orange squash at the back of the cupboard, along with the crisps.

It’s funny the little things you notice when your child leaves home, even if it is only temporary. Doors are left open to allow the sunshine to filter through (Harry likes all doors shut), the 3D cinema glasses have stayed in the drawer (he likes them out) and the furniture in his room is permanently clear of figurines which makes cleaning easier. However, I now have the jobs of emptying the dishwasher every morning and clearing away the dishes at the end of our evening meal.  These were tasks Harry had adopted as his own and he was very good at them. Molly – one of our black Labradors – has lost her sofa-companion and I’m sure she misses his constant kisses.

What I thought would be most noticeable, isn’t. For the last twelve years I had to be at home by 4.15pm on a weekday in order to be there to meet Harry’s school transport. However, our daughter has noticed that she hasn’t been nagged to “get a move on” at 4pm so the end of the school day has become a bit more relaxed for her.

Harry’s counsellor got in touch during the week to say that she has spoken to him on several occasions and feels that he is coping and settling well into the college routine and life.  (Such a relief). He is enjoying working hard and starts his new timetable tomorrow. This will see him starting to gain valuable work experience in hospitality and retail. Football is scheduled for Wednesday evenings. (I didn’t mention the laces). He had been on a coach trip to see a musical at one of the regional theatres and was booked onto another to see a production of Peter Pan this weekend. (He will be in his element and they will have a job to stop him joining in).

She welcomed my suggestions as to how the college could have helped us and other parents on induction day and they have already put photographs up on the bedroom doors. They will look at implementing some of the other ideas next time. I am so glad that they are prepared to listen (and act upon) parents’ concerns promptly and this fills me with confidence.

And she wondered whether a member of staff could support Harry to Skype us so that we could have a more direct means of communicating with him? Now, that really would make a difference and I am looking forward to seeing his face on screen.

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.

The Final Countdown

As the calendar on the sidebar of the blog shows, there are now only 5 days to go before Harry starts college. We have been sticking our heads in the sand and trying not to think about it but I can’t ignore it any longer.

The pile of Stuff For College is getting larger: new sweatshirts, extra medical supplies, posters, Blu-Tak, a spare duvet cover and even a football strip. Harry has never had a football strip. Never shown any particular interest in playing football. But when the forms came through from college asking him to indicate which sports he would like to participate in Harry opted for football. Much to our surprise. How he will manage with the laces on his boots we don’t know. We’re hoping he can get away with having them slack so he can ease his feet in. We indulged in a replica shirt, partly because Harry has never had one, partly because we like the idea of him running around with ‘Van Persie’ on his back. But he doesn’t have any socks. The pair I ordered online arrived and they were tangerine; not black. More suited to the Blackpool strip, or Wolves maybe? So, today I will be going shopping to buy a pair of black football socks.

I couldn’t get to sleep last night for thinking about all the What Ifs. We have tried to keep the idea of going to college in Harry’s mind without dwelling on it too much. His responses have varied: “I’m not sure about college” cropped up regularly. And the other day he overheard me talking to a neighbour about it and he piped up, “I’m not at college yet”. Then he asked me “When will I come home?” and my heart caught in my throat. “At half-term. October.” “Half-term?” Harry has no real concept of time so this means little to him. The longest we have ever gone without seeing him is two weeks (and that only happened for the first time last year). How can I explain to him that it will be more than twice that length of time until he sees us again and until he comes home?

And of course, once I had set off on that tack I couldn’t stop myself:

  • Who will tell him that, actually, he has last night’s dinner on his trousers and should put them in the laundry?
  • For that matter, who will teach him how to use the washing machine?
  • Will he realise that the batteries in his toothbrush are running low and need replacing?
  • Will he remember to towel-dry his hair thoroughly so that he doesn’t emerge after his shower fully-dressed but with his hair still dripping down his neck?
  • And how will he manage those football boot laces?

We have made adjustments to his daily routine so that college is less daunting. He has been getting up to an alarm clock signal, having a wash, brushing his teeth, getting dressed and coming down to breakfast. Because that’s how they do it at college. It has been harder to persevere with the evening routine. He might be 19 but we were still in the habit of going in to his bedroom and repeating the “Night night” mantra: “Night night, sleep tight… Don’t let the bugs bite… Good night, God bless… Love you.” Harry would repeat all these phrases back to us and sometimes it was more than he had said to us all evening. He has stopped saying to his Dad last thing at night before going up to bed, “Want you to come up.” That’s a killer.

So many people have told us not to worry. “He’ll be fine”, “It’ll be the making of him”, “It’ll do him the world of good.” And deep down, we know this is true, whatever “the making of him” means. We know that this college course is a huge opportunity for him to learn vocational skills and to start him on the path towards independent living. We know that he will be surrounded by students just like him and by staff that understand his likes and needs. We know that he will have lots of choices of social activities at evenings and weekends and that he will enjoy participating. We know that he adapts fairly quickly to new surroundings and routines. We also know that he rarely, if ever, expresses homesickness, although he usually says that he has missed his sister if she has been away.

So, we are preparing to let him go. It is daunting and exciting by equal measure. And there will be tears. Lots of tears.

How to Write a Learning Disability Assessment, S139a or EHCP Part I

I’m going to split this into several posts because I want it to be detailed and comprehensive. My post about Drafting the LDA gets the most number of hits on my blog and I’m guessing there’s a good reason for this.

PARENTAL INPUT

Let me make this quite clear. Parents are not supposed to write the Learning Disability Assessment or EHC Plan. However, they have every right to have input into the report and, considering that they are the people best-placed to know their child, theirs should be considered the most valuable input.

BE INFORMED

If you are coming to this post without knowing much about the LDA or S139a please take some time to read this post first; especially the ‘tips’ section towards the end.

WHAT IS INVOLVED?

Our input into Harry’s LDA was substantial (one workshop, seven drafts, several requests under the Freedom of Information Act) but don’t let this put you off. Provided you give yourself enough time (I would allow at least 3 months) and can be methodical in your filing you can do this.

WHAT HAPPENS IN YOUR AREA?

You will already have established that your child needs a LDA or S139a or EHCP. Go onto your council’s website and search using the acronyms shown above. Find out all you can about their strategy. Your child’s SENCo, Careers adviser, teacher/headteacher should all be sources of information and guidance. I can pretty much guarantee that you will be left in no doubt that what the local authority would like is for your child to continue in a local, mainstream setting because that is the cheapest and easiest option. This may be exactly what you want for your child and so you will tailor your LDA to show how best this will work. If this is not what you want then your LDA will need to show the opposite. This was our position.

WHAT TIMESCALE IS INVOLVED?

Before you begin, find out what you are up against. When does the LDA decision go ‘to panel’? i.e. When does the decision get made? In our case the panels sat in April 2013 (but we weren’t informed of the decision until mid-May). The LDA had to be completed by the end of January 2013. I spent October-December 2012 gathering information, writing emails, collating, filing and making absolutely sure I had at least as much information at my fingertips as the ‘panel’ would have; if not more. Be prepared to go to appeal and make sure you know what the appeal process is for your area and how long it takes to put into action. In North Yorkshire it was a maximum of 20 working days.

WHAT DOES AN LDA LOOK LIKE?

Our local authority is North Yorkshire County Council and in January 2012 their initial draft of the LDA consisted of the following. Their headings in bold and their responses contained in “quotes”. My thoughts in italics.

Personal Details: Name, date of birth, address, school attended and whether or not there was a Statement of SEN in place.

Nature of Special Additional Educational Needs: “Harry has Specific Learning Difficulties and a diagnosis of Autism Spectrum Disorder which can cause impairment in social interaction and communication. Limited literacy and numeracy skills and also as a result of his autism, needs instructions to be clear and precise when asked to complete tasks. Finds difficulty coping with change and needs significant preparation.”

Nature of medical/health needs: “Not aware of any.”

Current level of educational attainment (e.g. Pre-Entry, Entry Level, GCSE, etc.): May 2011 – here our advisor listed Harry’s attainment levels in Literacy, Numeracy and Science as shown on his Annual Review Report of that date. There then followed an update from January 2012 when our advisor must have been into school to gauge Harry’s progress. It mentions communication skills, confidence, physical coordination skills, ICT skills, the ability to apply learned knowledge and attention span. From this you can glean that such observations are important within the LDA.

Individual Education Plan: This consisted of 9 bullet points taken from the 2012 Annual Review, including things like: “to follow instructions when preparing lunch” and “to ask an unfamiliar person for directions”. Hardly an IEP!

Details for Transition Plan of long term post 16 objectives (and Pastoral Plan where appropriate): This section went into the past and showed what the plan had been from 16-19.  It goes on to say that local and specialist residential college options had been discussed, as well as Personalised Learning (a massive buzzphrase in our area) and that our preferred option was for ISP (Independent Specialised Provision). It mentions that Harry lives in a remote area and “access to any activities will necessitate travelling by car.” This sentence is actually hugely important because there are massive financial implications.

What support and strategies are currently provided for this young person now and what will be required post 16 (outline the post 16 educational and training options as part of this)? “Harry needs help or to be reminded, to keep on task to complete work or let others know when he has finished. Frequent reminders and reiteration of his routines as this helps reassure him and will hopefully help him settle into his new environment. Harry struggles with pencil control and although he can write over his name he cannot write it independently. He also has difficulty in typing his name independently.” You can see how basic this was and why seven drafts were needed …

What equipment/technological aids are required for this young person post 16?

What assessments and by whom have they been undertaken for this young person? “Speech Therapy”

Contact details of other agencies currently involved with this young person. “Connexions Careers Advisers, Igen Ltd; School Doctor”

What other agencies might need to be involved with this Learner post 16 and what action needs to be taken? “All the above”

Additional Information: There followed a page and a half of observations made in 2009 and October 2012 by two separate Connexions Advisers which was in no order and skipped around all areas of education, health, medical, and personal.

Criterion – there is no local provision that is sufficient in quantity and adequate in quality which can meet the learner’s needs. This was the Careers Adviser’s own note which showed what the LDA was attempting to convey.

Criterion – there is evidence that the learner has medical or care needs which cannot be addressed by local providers. Another note which needed expanding.

USING YOUR AUTHORITY’S LDA AS A TEMPLATE

Once you have a draft LDA it will give you some idea of what you need in order to enhance the panel’s understanding of the needs of your child and to make the LDA the best it can possibly be.

At this early stage our LDA consisted of 5 pages. The content was scattered, there were gaps and there was little detail. A good place to start was in getting up-to-date reports on which to build Harry’s case.

GET UP-TO-DATE REPORTS

The panel will want to see reports no more than 12 months’ old; ideally no more than 6 months’ old.

If they have a Statement of SEN start with your child’s final Annual Review Report. Harry’s last review took place in September 2012 (leaving in July 2013). Make sure you submit your parental  input in good time to be taken into consideration at review. The Report produced after this meeting will be submitted with the LDA so make sure your key priorities are minuted.

As a result of the review you might find that the Statement of SEN needs to be revised to reflect new information, etc. This was certainly the case with us. The most recent Statement will also be submitted so make sure it accurately reflects your child’s needs now.

Again, as a result of the review it might be suggested that other agencies produce reports to support the LDA. It is for you to know whether these will be helpful.  In our case it was felt that a report by the Educational Psychologist would help and we agreed. The report was written with it in mind that Harry would be moving on to an ISP and stressed his vulnerability which we were then able to quote in the LDA.

Harry had previously had an Assessment of Need from his Transitions Manager at Social Services which just needed updating. This document carries a great deal of weight at panel.

Other reports could be from a Speech & Language Therapist (SALT), School Doctor or your own GP, Occupational Therapist, Learning Disability Service and any agencies who have had an involvement with your child. Harry attends regular sessions run by Action for Children and by a local support group and I asked session workers from both to write a half-page report.

NB: If you are unhappy with any aspect of a report don’t hesitate to get in touch with the writer and ask them to revise and reissue.

EXTRACT KEY QUOTES

As each report comes in read them thoroughly and extract key quotes which will be helpful for your LDA.

For example, the local support group reported that Harry’s social vulnerability is an issue which sessional workers became aware of when “there was an incident… where a group of young people.. were encouraging him to do and say things, because of the close supervision of Harry this was very quickly dealt with, but it did highlight the ease in which people can take advantage of Harry, despite high staffing.”

From the Educational Psychologist’s report: “Harry was echolalic throughout the group discussion”; “Harry was unable to engage with me… appearing shy and uncomfortable” and particularly, “Harry presents as a potentially socially vulnerable student as at times he lacks the social understanding and awareness that would be considered to be more typical of young people of his age.” It went on to list 11 minimum requirements for his next educational setting.

From the Learning Disability Service: “I envisage that Harry will continue to require structure and support from staff around his autism and related obsessional behaviours.”

From the Independence Support group: “Unable to use initiative to remove himself from vulnerable situations, and has no awareness of danger, especially when out in the community.”

From Social Services Assessment of Need: “Harry has recently started to receive speech and language therapy in school again and he would benefit from continued support with this” and “Harry would not be able to access public transport independently without support even if it were available.”

From SALT: “He can still become easily distracted and this affects his ability to attend to, and process, spoken language.”

FILE EVERYTHING!

Once the reports start coming in make sure you keep them safe. Buy a large A4 ring binder and create a section called Reports and file them away.

 

Okay. I think that’s enough for one post and in the next one I’ll outline what else you should have in your file and what research you need to do.

A Red Letter Day

16th May 2013: our and Harry’s ‘Red Letter Day’.

After weeks of waiting expectantly for THE letter to drop onto our doormat, its eventual arrival almost went unnoticed. Half a dozen letters came on that day and I scanned them all quickly to see if any of them was the letter telling us what Harry’s future might hold. Bills, junk mail and insignificant-looking brown envelopes. Another day of waiting loomed.

It was eleven o’clock: time for a coffee. As I sipped I began to open the envelopes and browse their contents. The insignificant brown envelope contained… a letter from North Yorkshire County Council. OMG! (as my teenage daughter would say). This was it. You know how sometimes you have to read things several times before their meaning sinks in? That was me.  But I picked out the key sentences: “Pleased to inform you … able to approve funding…” The establishment name was correct, the placement type was correct. “Placement length: Three Year Programme – Commencing September 2013 and ending July 2016.” Correct. Much to my amazement the council seemed to have approved three years of funding when I had been advised we were likely only to get two. “Funding Approval: September 2013 to July 2014.” This last bit was worrying. Did this mean we had to reapply for funding on an annual basis? A couple of phonecalls later reassured me that this was standard practice and that the key phrase was “Three Year Programme”.

And then the relief hit me. And the tears came. This was what we had worked so hard for. I had been prepared to go to appeal to get funding for the full three years but Harry had been given it anyway. Instead, we can relax and spend the summer preparing Harry for the next stage of his life: college.

Now the countdown is really on.

192

What Does The Future Hold?

Last week it was my husband’s 60th birthday. There were  balloons, there was cake and trifle; champagne corks popped, the family gathered and celebrated.

As we get older, what does the future hold for our children?

As we get older, what does the future hold for our children?

However, this week I can’t help contemplating the future: for us and for our children. The numbers don’t lie. My husband is 60, albeit a young-at-heart, doesn’t look sixty, 60. His father died at the age of 77 and I know this weighs on my husband’s mind. How many years does he have left? 17? The truth is, none of us know.

With that in mind I wonder how many of you have made a will? You might not have a fortune to leave to your loved ones but if you have a child with special needs you  most certainly have an opinion on who you would want to bring up your child, how and where you want your child to be educated, what kind of future you envision for your child. I know I do.

You can make provision for your child by including a Letter of Wishes with your will. In this you can let those left behind know what your plans are for your child. When Harry was younger my Letter of Wishes included who I wanted to act as guardian, that I wanted him to stay at his special needs school until he was 16 and where I would like him to go for further education. I did the same for my daughter with the proviso that her wishes must also be taken into consideration.

If you wanted to go further you could let your executors know where your research is kept, include prospectuses, etc. Consider what guidance others would need in your absence. I try to keep my husband informed about all the little discoveries I make which could have an effect on Harry’s future.  But if I wasn’t here would he be able to remember everything I’d told him. Of course not.

In the course of completing the Learning Disability Assessment I finally got round to filing all the current paperwork relating to Harry’s education and welfare. It occurred to me that this equates to his EHC plan and would be the first port of call should anything happen to me. A big black ring binder contains:

  • Last 12-months e-mail correspondence pertaining to Harry
  • Draft LDA (completed LDA to be added in due course)
  • Most recent Statement of SEN and Annual Review
  • Most recent reports from all agencies involved with Harry
  • His social services needs assessment
  • His home-to-school transport arrangements
  • Financial statements, DLA award details, Carer’s Allowance correspondence
  • Ofsted report, prospectus and correspondence from Harry’s (hopefully) post-19 college

To this I am considering adding things like:

  • A list of names and addresses of all those people/agencies who have dealing with Harry
  • Details of the blog and Twitter account
  • A list of organisations which I feel may be useful for Harry in the future: independent living, housing, etc.

We don’t know what the future holds but there are lots of things we can do to help shape the future for our children.