Going to College, Social Workers, Day Centers and Other Fun

I posted last October about how we had been to see the local college and that we felt it was the right place for him. Well, after a shaky start with emails disappearing into the ether, his name falling out the net and not hearing anything for months, me going to the college and asking what was going on, the “net” went back and got him, emails were sent again and he finally got his place. It is a Life Skills course that runs for three years, three days a week. So far so marvellous.

We wanted somewhere to go for the other two days or he’ll just sit in his room and watch Youtube. We went to another open day to a place a bit further out which he seemed to like. He went with his class and still liked it. We arranged an assessment which seemed to go well and we waited. And waited. And waited. I chased and chased. They needed reports. I’d given them reports on the day of the assessment. We waited some more. I chased some more.

Eventually we got a short to the point email saying no. I sent a shorter and more to the point email back. We had wasted six weeks when we could have been looking for alternative places. In the end we decided that we would still have College and we could look for somewhere else later in the year.

In between all this I found out he no longer had a social worker. No one had told me. This was February and it has taken till now to be allocated another one.

On the last day of school his class hosted an afternoon tea for the parents, it was lovely. I got talking to one of the Dads and he told me about a day center (for want of a better word) right opposite the school where one of the other lads went. In fact I found a couple locally and emailed both.

The one by the school replied, we exchanged emails, we went to visit and he had an assessment. They told me how much it would be. The trouble was his college days clashed with their more activity based days. I contacted the college to see if it was possible to move his days, explaining that a social setting would complement his education. we didn’t hold out much hope if I’m honest but they’ve agreed! The social worker is coming to see me to discuss funding. Fingers crossed.

This is a very abridged version of events, frustration, worry, and annoyance at a system that seems to make it it’s business to unnecessarily complicate things. We had next to no help from school, everything we did, we did on our own or recommendation from other parents. As the head of sixth form said finding placements for Learning Disabled Adults is a lot more difficult than Learning Disabled Children.

In fairness I think it has worked out for the best, his college, Madam’s school and the day center are all on the same bit of road. Very handy for dropping off and picking up. Sir will be at college and the center on the same days as his friend which helps tremendously.

So, what did I learn? You need to chase people. They do not come to you. Never take anything as given until you have it writing/email. Do your own research. Sign up to your local council newsletters if they have one, and definitely follow their socials because that’s where they put most of the information about open days etc. Start early. If your child is in Y10 or Y11 now is the time to begin looking and keep looking because places that exist now might have shut in two years time. If phoning or emailing doesn’t work, go see them in person. They are there to help you. Good Luck!

Last Year At School For Sir – What Happens Next? #FragileX

Sir has now started his last year at school funnily enough as Madam has gone into 6th Form. Now we have to start looking at where he can go next September.

I found out rather by accident that there was an open day today across the local colleges, one of which is on the same site as the school. This brings many bonuses. Sir is already familiar with the place and they offer the same sort of course for him as he is already doing at school. Life skills, Maths, English, Art, Music Therapy etc for three days per week with the possibility of more. I had managed to sneak a look round between lockdowns a year or so ago but wanted Hubby and more importantly Sir to have a look too.

After some reluctance to enter the building Sir disappeared off with the lady giving the tour and we had to catch up with them! She showed us the various rooms and explained how the groups operate. Her opinion was that he would fit into either the middle or upper group. Class sizes are similar to what he is used to at school. Having not wanted to go in Sir was nosing about and seemed very happy with what he found.

As a result of us registering him for the open day he is now on their system as an applicant. We need to give them a copy of his EHCP to move the process further along. Fortunately the review for that is after half term.

Overall we felt that this is a good place for Sir to go on to after school. Obviously we need to look at other places to fill the remainder of the week so I shall be investigating that. Those places generally require funding so we will seek help from our Social Worker. I will post about that process as it happens. We may also use this opportunity as a sneaky peak at what might be available to Madam when she finishes school although her needs are different it never hurts to start looking early.

Pathway to Adult Learning Disability Services – Update #FragileX

Last June I made this post https://earlyrisingmum.wordpress.com/2021/06/20/pathway-to-adult-social-services/ as we started the process of getting Sir a Social Worker.

We received a letter confirming that he had been allocated someone – I forget when- and whilst on holiday over the Easter break that person phoned me and left a message asking if she could come to visit us.

When we got home I rang her back and made the necessary arrangements. The visit happened last week. Nothing gives you as much inspiration to tidy up the house I assure you.

The Social Worker – I’ll call her A – was very nice. Sir even waved hello when she arrived. I’d told him she was coming and that she wanted to talk to and about him, he replied “NO!” so I will take his politeness toward her as a big win!

A asked us all the right questions to get to know what he is and isn’t capable of, what we need help with, what sort of services he can access – all chargeable of course- what benefits he can get when he does turn 18 and so on. As he is still at school for another year we have plenty of time to figure out where he goes after that.

Although no firm plan was made, she is going to make enquiries about a few things for us and of course we can contact her in the meantime should we need to.

Even though the process has taken a year, most of that was down to the fact the social worker doesn’t get allocated till nearer the young persons 18th birthday. The time between actual contact and things getting done has been quite quick.

So far so good.

Parent’s Evening October 2021

Like many schools, Parent’s Evening for us was a phone call during the afternoon. Seems the days of actually going to the school and seeing what your child is doing for yourself are behind us at least for now.

Madam’s was short and sweet. She’s doing very well, she’s lovely, she’s a pleasure to have in class. Would have liked a bit more information about what she’s actually doing but it seems to be all good.

Sir’s, perhaps understandably, was a little more in depth. He is now in the classroom by 9:15 instead of sitting out in the corridor till lunchtime refusing to go in. This is a massive improvement and the one I am most pleased about. Apparently he goes in through a quieter part of the school, so is not as overwhelmed by the amount of people that are about.

His teacher tells me he reads one to two books a week, and is able to prove he understood what he read by answering questions about them. I have long said he’s able to read, finally he seems to be demonstrating that at school.

She said he loves cookery, and helping out in the kitchen. He does the washing up, tidies away after himself, and is basically one of a very few in the class who is trusted to get on and do whatever it is with minimal supervision. I admit I do look forward to Tuesdays when he brings his work home 🙂

We also discussed when his leaving date. He can stay till he’s 19. At the moment he’s 17 so will be there this year and next but aren’t sure if he can do another one after that. Would be brilliant if he can. Once I know, I can start to think about what’s next. There is a college on the same site as the school, which offer a provision that would suit him My preference is for him to go there.

Back To The Dentist After Two Years….#FragileX

With Covid restrictions easing and life returning to some semblance of normal, I’ve been getting everyone caught up with all the important appointments. Podiatry, hair cuts and the dentist.

Madam and I have both been in the last twelve months, but I still got us seen this year as soon as I was able. That done I had Sir to sort out.

Readers will know that Sir does not like the dentist. At all. The guy he sees is lovely. Very patient. Trouble was it had been two years since his last appointment and I really wasn’t sure how he’d react.

I had some complaining on the way there, he stopped walking once or twice and I had to cajole him along but apart from that he was okay. We were a bit early, however they didn’t keep us waiting.

We persuaded him into the room and then…. he sat on the chair! The Chair! He allowed the dentist to look at his teeth and give them the best clean they’ve probably ever had. He was there a good ten minutes or so which for Sir is a HUGE achievement. I admit I did need to use a little bribery, promising him a tube of Pringles if he sat down… best £3.00 I’ve ever had to spend though.

He is now back to six monthly appointments (fingers crossed) I’d best have my Pringles money ready for next time!

Pathway to Adult Social Services.

Back in March, after much discussions before then, we finally started the process of getting a Social Worker for Sir. It always seemed a slightly scary prospect to be honest, we don’t need one we thought, but everyone told us we *should* get one.

We first applied to Child Services as he’s under 18 and still in school.

The whole thing moved quite quickly to be fair. I later found out that when the young person gets to about 16 and a half is the right time to be start the ball rolling.

School sent a report off and then I received a call from the First Contact Center. A very lovely lady who explained the steps necessary for getting things organized. This was followed swiftly by a Teams meeting, during which we talked about Sir’s needs and what we wanted from Social Services. I’d been warned don’t tell them everything is okay or they’ll close the case (isn’t that always the way?) but in this instance I was asked “are things so bad you need us to take him off your hands for a while now or is it just help with planning his future such as college?”

Er no! help with planning his future will be fine thanks! but putting it in a straightforward way like that made things easier. It also meant that he could be put on a “pathway to adult services” which means one less form.

A phone appointment was made for the following week (I think) to fill out the necessary forms. Mostly it seemed to be a tick boxing exercise, however, and this is the scary part, the lady clicked the enter button and the computer said NO. What!!! we both cried.

Turns out that even though Ms Nice Lady fills these forms out every day, she’d missed a box. Once she ticked it the computer was happy and Sir was eligible.

Can you imagine if that was a parent filling out the form? who didn’t realise they’d missed a box? One tick is apparently the difference between help and no help.

Anyway, everything got sent off, we received copies, and a few weeks later we had a letter confirming Sir had been referred to the Adult Learning Disability Team. To date he hasn’t been allocated a person but that might not happen until after he’s turned 17.

Overall our experience was quite straightforward, I know not everyone’s circumstances are the same. Pre Covid we would have had a visit but everything was done by phone/teams.

Advice wise, I’d say get in touch with school first as they will be able to get things started, don’t tell social services everything is fine if it isn’t but also be honest about the help you want -if that makes sense. Lastly check your form filling at least three times just to be sure you ticked all the boxes

Getting Our Covid Vaccine #FragileXSyndrome

Photo by Nataliya Vaitkevich on Pexels.com

Before the government decided young people could be made a priority for the vaccines, I had phoned my GP to ask if it were possible for Sir to have his, and also myself as his carer, mainly spurred on by the horrendous stories in the news at the time. I was told it would be a couple of weeks for him, and that they would take my details, though no promises could be made.

I was most surprised to receive two text messages the following day inviting us to make an appointment. The first available day was today – 2nd March. I’d been told that you needed to pick up a consent form on the day of your appointment. In order to try and minimise the stress all round I again phoned the GP and asked if these could be obtained in advance (this was Friday) the receptionist said she would print them off and I could collect them that day. I took a walk up a couple of hours later. I filled the forms in over the weekend.

We arrived at the center slightly early, there were parking marshals everywhere, showing you where to park, what to do and answering questions. We were advised to wait in the car with the hazard lights on until told to go in. As it happened the queue wasn’t very long so we basically joined it straight away. The admin people inside were very efficient, social distancing very well marked out. Sir was grumpy but not too unhappy!

He didn’t want to go into the main hall. It looked a little like a brightly lit theatre – he doesn’t like theatres – and staff were in full PPE. He turned round and walked out..

One of the helpers asked if we were okay, I enquired whether they had a side room we could go in, explaining Sir’s dislike of halls. Straight away he showed us through some doors to a quieter area and offered to do our jabs there. Sir’s was done without any fuss as was mine. The gentleman then showed us a back way out to avoid crowds coming in.

I cannot fault the organisation, the staff, the guy who gave us our jab, any of it. I am especially proud of Sir! I had been worried but thankfully it went swimmingly.

So, my advice would be:

Phone and see if you can collect your consent form(s) in advance

Take distractions with you – phone, food, hand held fan, whatever works and is small enough to carry.

If you have concerns about anything, tell the staff when you go in. Certainly the people I spoke too were very helpful.

Try to stay calm ( yes I know, easier said) you can have your meltdown, cry later. If you stay calm then your young person will too.

Don’t forget your mask!

Good luck and I hope all your young folks get their jabs very soon (and the older ones!)

Home School with Fragile X Update

Like most children, mine have yet to go to school this year, the latest date is March 8th, I shall just be happy to get as far as half term.

School have really got their stuff together this time round, before it was lessons uploaded to Classdojo, sharing the laptop and an awful lot of printer ink. Now we get a work pack sent home every week for Sir, every two-three weeks for Madam, containing everything needed to complete the work. Number lines, Teams passwords, stuff to make a bird feeder, dated maths and English work, all sorted into plastic slip folders labeled for that day, together with a timetable explaining what you need to do with each thing. Being a SEN school of course classes are smaller and this probably wouldn’t be possible with mainstream – though the school I work at has put together packs for those that want it.

They also introduced two Teams sessions, in the morning and the afternoon. Kids are encouraged to attend at least one of them. Teachers are available to discuss any problems they have with the work. Madam’s is especially useful. She is very comfortable in front of the camera and I get booted out of my own room whilst she’s on there! It means I have an hour where I can do Sir’s work with him or maybe catch up with housework. I’ve even been known to sneak out for essentials. Hubby is at home, I’m not leaving my children unattended.

Sir is not so keen on Teams, but each day I log on via my phone and encourage him to at least wave at his teacher. I’ve found that if I reverse the camera (so it faces him not me) and engage him in doing work or helping with the laundry, he gets less upset and will kind of interact rather than shoving me out of his room and shutting the door in my face.. His TA finds this very funny 😀 I know it’s part lessons part welfare check. I’ve read articles about parents upset at the fact schools are checking on them. They have to. You might be okay but some people aren’t. I’d rather they check on me along with everyone else thanks.

Some schools have a set timetable on how the work should be done. I don’t agree with that, school has to fit round home not the other way round. Fortunately our school isn’t doing that, so we fit lessons round everything else. We tend to plough through as much as we can in the morning and pick up after I’ve been to work. Sir does Friday’s work on Thursday so it’s all ready to be picked up. This is where the work packs really help, I can just sort the lessons for that day and get on with them. No fighting over laptops.

The school also do drama lessons and music therapy online. Both are great fun. Technically they are for Sir’s class but Madam has a standing invite to join in too.

We’ve had both parent’s evenings on Teams, which worked very well.

Make no mistake it’s been difficult and taken a long time to settle into the routine we have now. Certainly I would prefer my kids to be in school and it worries me how much time they’ve spent at home. It would be nice to think schools can reopen soon, especially if given the means to do so. I do roll my eyes at the media and celebs who clamoured for schools to shut are now shouting for them to reopen. It’s almost as if they’ve realised how hard it is when your child doesn’t have access to education, something that far too many parents with SEN kids were already aware of but no one really cared then. Funny how people suddenly find issues to be important when it affects them.

Anyway… I am very proud of both Sir and Madam for how they’ve handled this. They do get fed up and frustrated. They want to go back to school. They have good days and not so good days. For now I have a cupboard full of coffee and one week till half term!

Turning 16 with Fragile X

*Disclaimer I just found out that the previous post was called Turning Sixteen with Fragile X so this is a sequel of sorts!

“Happy birthday sweet sixteen” sang Neil Sedaka – showing my age there aren’t I!

Sir turned sixteen on Friday, my little boy is now a proper young person but who knew the changes and admin that would cause.

I wrote a post a while ago about applying for school transport so he can continue getting the bus/taxi in September. No one has mentioned money yet..I guess that’s to come, but otherwise it’s sorted. It involved phone calls and a lengthy online form. The start of many it would seem.

Child Benefit was the next thing, we don’t claim, but sent back the form to say he was entitled to it anyway. This automatically produced his National Insurance Number, I’ve had the letter confirming it. Two down, many more to go.

DLA stops at age 16 and changes to PIP. I am currently beginning the process (and oh it will be a process I have no doubt) I had a letter earlier in the year asking if I wanted to be the appointee for him, filled out the form sent it back. Had a couple of snags with his payments, those are sorted. I received another letter yesterday asking me to phone up and start the claim, I answered a list of questions and now I’m being sent another form to fill in all the relevant and supporting details. Always a joy. The phone call lasted about half an hour including waiting to be answered.

At around the same time I attempted to open a bank account for him.. that didn’t go to well. I asked in my bank, they told me to fill out an online form, then bring Sir in, with either his passport or birth certificate and he could open the account that way. So I did and presto! He has has his own account. Marvellous. This was the most straightforward thing I’ve done!

In doing so though it raised the need for his passport to be renewed. Went to a well known photo store, the lady was lovely, we got his photos and a code to use with the online form. Filled out said form, but because he can’t sign his own passport I need a letter to say so… phoned the Dr’s who were very helpful and they sent my some supporting evidence. I enclosed my own letter and sent everything off. I had an email today to say they’ve received it. Of course now he’s sixteen he needs an adult passport.

I know I’ve got quite a bit done but it does feel as though I’m wading through treacle. It seems it’s okay for companies not to be able to do stuff because of these “challenging times” but not your everyday Joe Public. If they can’t get stuff done how do they expect us to? Especially when having a Learning Disability immediately makes everything three times more complicated.

That’s where I am at the moment, I will update as and when.

Looking Back At Home School with Fragile X

Or Mummy’s School as my two called it.

Although I work at a school, I don’t teach – unless it’s a random discussion about spider webs, flowers or why you should leave earthworms alone, so when faced with the prospect of giving home lessons to two teens with Fragile X it was slightly scary.

It quickly became apparent that the dining room table was not suitable and I turned my dressing table into a desk, which it remains. I downloaded a myriad of apps onto my phone, thank goodness I had a new one for Christmas, my old one would never have coped. Class Dojo has been my saviour! It was a bit of a bumpy ride but after Easter things settled into more of a routine. Both the kid’s teachers have been brilliant. They sent me a timetable for the week, which gave me something to work to, then they posted the lessons for the day/several days and we worked through them at our own pace. I have learned more about long multiplication than I ever knew (or wanted to..). We’ve have maths, English, science, history, art, music, Community Participation, craft projects, and so many worksheets, the printer has never worked so hard in it’s life! Now I have two folders full of all the work they have done. Most of it has been photographed and uploaded so the teachers could see it.

I’m really proud of both the kids. Madam was very eager to get on and do her work, Sir being rather more reluctant. He sees school as school and home as home, but we got there. Turns out he knows a lot more than I ever gave him credit for and once settled he will work hard.

I must have done something right as there was more than one occasion where they were both in the weekly top three house point earners. They came second (Madam) and fifth (Sir) in the table for the whole year over the whole school!!

They both went in for a Transition Day, they loved going back and seeing some of their friends. I have no problem with either of them going back in September. Sir has coped far better with social distancing etc than I thought. Remind me not to underestimate him!

Both their school reports were glowing 😀

I really enjoyed doing this little bit of Home School, the kids enjoyed it too. I wasn’t sure how it would pan out with Hubby working at home as well but we made it work.

A lot of SEND parents have felt let down, left to struggle and unable to cope during lock down. I feel very lucky that wasn’t the case for us, the school were very supportive and both teachers went above and beyond to help. I hope someone, somewhere takes a long hard look at how those parents were treated and measures are put in place to ensure it doesn’t happen again.

Now it’s the school holidays, lockdown is easing, places are opening. We aren’t straying far. The kids come food shopping with me, getting Sir to wear a mask is a work in progress. They have a staggered start in September, which I think is for the best.

I shall leave you with some Alice Cooper, my two have been singing this for the past four months..