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

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..





Should They Stay Or Should They Go? Back To School With Fragile X

Like a lot of children my two have not been to school since March. Although I’m a key worker and have been working throughout – albeit only one day per week – their school did ask if we needed them to go in. Hubby’s job means he can work full time from home so I told the school that they would be fine at home with us.

We got into a new routine of Mummy School and “SHHH Daddy is on the phone!” I changed my dressing table into a desk so that I’d have somewhere to deal with the seemingly endless admin that had arrived from nowhere. I thanked the Junk Gods on a regular basis that we never throw anything out when the school sent art projects to do.

Fast Forward eleven weeks, letters start arriving explaining how things will look when the school does reopen. What do we think? Will we send our kids back? There was no date to decide by so I didn’t really think too much about it. I saw the Government advice to SEN schools which said from 1st June they should start preparing to take children back from 15th June. I had a letter from the school confirming the date.

On Thursday there were telephone calls from both their teachers wanting to know if the kids would be returning – I honestly didn’t know what to do. We had many discussions over the course of the day, going round in circles. Sir would definitely struggle with the changes in routine, social distancing, not necessarily having the same teacher or being with his friends. Madam would understand all of that but what if her going to school and Sir not caused upset? Yes I know we can’t (and don’t) hold her back because of that. I asked of the work done at school would be the same as the work set at home, the answer was a definite no. It would be whatever the teacher of the day could set. This coupled with the fact it seemed a lot of disruption for the sake of four weeks, we decided that the kids will stay home. I want to stress that this has nothing to do with my kids being safe at school, I’m certain they would be. It’s more the distress such a massive change would cause Sir and that Madam has worked really hard at home on the topics they’ve started. It takes her a while to grasp things and if they suddenly started something she didn’t understand she would be lost.

I’ve told both of them that as well as school learning, they will need to do extra things, be it cooking, life skills, computer work, reading or whatever else I can think up! It will also give me more time to start sowing the seeds of social distancing etc in Sir.

They will however be going back in September. By that time I’m hoping all the schools will be able to put in more permanent measures for keeping pupils distanced and safe.

At Home With Fragile X – Week… erm…. six is it?

Week whatever it is.. I’ve lost count.

Yesterday I discovered the car battery was flat. Hubby has an old battery charger that still works and we managed to get it sufficiently charged that the car would start, then I took it for a run out. Not only did this cause anxiety for me but also for Sir. He didn’t like us being outside monitoring the battery or talking to the people over the road – at a social distance – so he threw his cuddly toy out of the door :/ He’s been doing a lot of that lately, rather than asking us for whatever it is he wants. I think lockdown is getting to him.

Madam is missing her school friends. She is doing very well with her work though and came third on last week’s house point table.

I gave them both a duster this morning and told them to clean their rooms. Kept them entertained for five minutes or so LOL

Stay safe everyone and may your cars all start first time.

At Home With Fragile X – Week Five

The kids really got down to their school work last week, we managed to get all the lessons done. Although they only get one lesson a day, they attend a SEN high school so the physical workload is less and we don’t have any exams to worry about, we have different stresses. For Sir, school is school and home is home, so for him to have actually achieved all he has is quite something. Fortunately most of his lessons are practical, getting him to help with chores, watch videos, things like that.

Madam’s work is more typical high school. Last week she did English, Maths, Science, ICT, Forest School, Citizenship and PHSE. I sent so many photos of her work in!

They both had the same Forest School work so they did that together.

For me, I’ve felt more organised around this schooling business, I’ve also got some “Home” admin done, my car insurance is up for renewal for example.

Hubby is still ensconced in the spare room with a bank of computer monitors. We are lucky he is able to do his job from home and I know there are those shouting “SEE SEE WE CAN WORK FROM HOME!! WHOOPEE!!” It is a good thing. But sometimes, some days you need that barrier. You need that journey home to settle your mind back down, to listen to the drive time show on the radio or stare out of a train window.

Anyway, hope you all had a good week.

At Home With Fragile X – Week Four

Last week we should have been on holiday, obviously it was cancelled. So I let the kids off all school work, Hubby kept his week off and we caught up with a couple of jobs that needed to be done. The biggest being we took up some of the decking to weed proof underneath. It took longer than we thought – as these things do – but it won’t need doing again.

Each day I cooked a meal based around the various restaurants at Centerparcs, much to the amusement of the kids. Never have we had so many home cooked meals! I even made my own peppercorn sauce 😀 I cooked sweet and sour pork from scratch and that was delicious if I do say so myself.

The kids were disappointed not be on holiday, however it’s been re booked to October and they are looking forward to it.

It was “back to school” today, Sir was not impressed but he did his maths. Madam settled to her work with out any issues.

I now have new timetables and work from school, which we can work through at our own pace. As Sir’s teacher said, in the minds of SEN kids there is school and there is home and never the twain shall meet as the old saying goes.

At least the sun is out!

At Home With Fragile X – Week Three

Things have been a little less dramatic lately. I got the details for Sir’s internet banking.. less said the better. My seeds arrived so I’ve been busy planting spring onions, chilli plants, basil, radishes, more carrots, parsley and all sorts.

We spent a lot of time outside last week, the weather has been glorious. Easter weekend was quiet obviously, but the kids got their eggs – I bought them before lockdown when they were on offer.

I’ve used a local shop that I’d never set foot in before, much nicer than the supermarket scramble.

Also I’m loving the online concerts that people are doing! Alfie Boe did one from his bedroom, Blackmore’s Night have done two from their home, Brad Paisley is the home concert king!

The kids seem to be coping well. We were meant to be going to Centreparcs today – we’re calling it Homeparcs for the week. Hubby has kept his week off work, no idea what we’ll do yet.

I’ve left off school work, it’s the Easter break.

Hope you are all keeping well x