Four years on

So the last post was February 2014, and it's now February 2018 as I type this.

A lot has happened in the space of four years. Shortly after we discovered the joys of ABA, we started a home program - at great cost. Sue left her job around April 2014 (due to her role being relocated to Birmingham) and she was able to become Emily's full time ABA tutor. We still needed a consultant to create a program and let us know if we were doing it correctly. That's the costly bit.

After a year or so of doing an ABA program, we were able to collect enough data to demonstrate that Emily was making progress and, in her case, ABA worked. We then went to local authority to get them to change Emily's school from a general Austism school, to an ABA-specific one. We found a great school called Rainbow in Wandsworth and they had a place they could offer her.

Unfortunately, the local authority said no (assuming due to cost) so we took them to tribunal. We plead our case, with a raft of experts pleading our case, and the local authority and Emily's existing school plead their case. You can't argue with science (which is what ABA is backed by).

Emily eventually started at Rainbow and it was all good. She's still there and getting on very well. I believe ABA has really helped her. She's still a quiet, reserved child and you can tell she is "different", but I believe the change in both school and teaching methods have been very beneficial to her.

We've accepted, quite begrudgingly, over the last 9 years that Emily is who and what she is. There's no magic cure. You deal with the cards you are dealt and find the silver lining in the cloud. Emily is a lovely, loving child who loves her hobbies -books, puzzles, etc. She can ask for motivators like rice cakes and she can alert you to problems (like needing the toilet, or the fact that she has a bloody nose).

I do wish I could snap my fingers and have an actual conversation with her, but I need to focus on the good things, not the "wish I could haves".

Emily turns 10 next month and it's been quite the decade of ups and downs.

As I write this, Sue if trying to finalise Emily's EHCP (Educational and Health Care Plan). As usual the local authority are trying to downplay the effect that ABA has had on Emily in the last couple of years. Something we have fought so hard for. It's a shame that we still have to fight.

Oh well, nothing worth doing ever happened easily did it.

Over and out!

New School Year!

It's hard to believe that Emily is entering her third year of structured school activity.

Emily on day one of school.

She was in Dragonflies from 2011-2012, Red Squirrels at Rainbows from 2012-2013 and now she's an Orange Tiger at Rainbows for the 2013-2014 school year.

She arrived home today and gave me a massive hug and cuddle, before running off to her trampoline.

Not really sure what this year will have in store for her, or what advances / breakthroughs there will be (if any).

Her class has the addition of another girl (of the three girls in the school, two are Orange Tigers) so it will be interesting to see if there's any female bonding at all.

Watch this space.

Emily's annual review

We sat down at Rainbows with a collection of professionals in Emily's life today to talk about her progress and to map out the next year.

All in all, I think everyone involved - head of Rainbows, teacher, and therapists - were quite happy with Em's progress. There's obviously a LONG road ahead, but we're no longer in the starting blocks.

Sue and I got to air some of our concerns that we noted recently with Emily - mainly the flicking of book pages and stabbing her thumb through them and pushing adults out of the room once she'd got what she wanted from them - usually a book or a Richard Scarry video on the TV. Everyone involved is going to work on some strategies to help Emily overcome these "issues".

We have a four point plan that we're going to work against over the next year that will hopefully push toward fulfilling more objectives on her statement of educational needs.

Dancing with my mummy

Today is Emily's first school ball.

From 4.30 - 6p, her school is having a Valentine's Ball and students from Rainbows have to be chaperoned by parents. Sue's looking forward to a bit of a boogie with Em, who will most likely be doing the pogo, as she normally does.

The entry is a paltry £2 per ticket and that includes unlimited drink and a packet of crisps.

I keep wondering if the theme is Enchantment Under the Sea and if Marvin Berry and his band are playing. Probably not to both of those, but it's quite funny that our little 4 year old is going to the ball.

Em's first day of school

She's done it before and she'll do it again, but today Emily started school.

This isn't nursery or whatever Dragonflies was, this is "reception". In my day we called it Kindergarten. A full day of teacher supervised play, basically.

Em looked very smart in her Green Wrythe Primary school uniform as Sue and I both took her to the school gates. Em being a little girl was a bit freaked out that we were handing her over to some strange woman in a building she'd never seen, but given how easily distracted she is, I don't imagine the freak out lasted long.

Em's doing half days this week to get her adjusted to life as a Red Squirrel at the Rainbows Opportunity Base and it'll be full days from Monday on.

School induction today

Sue and I had an induction workshop today at Emily's new school for September.

It's called Rainbows and is attached to Green Wrythe Primary School, up near St. Helier's Hospital.

We had a quick look around the classroom she'll be in. As the school's theme is colours of the rainbow, the reception class is "red" - this year as there's two classes, one will be Fox and the other will be Squirrel.

We also talked about various other aspects, filled in an admission slip and got a quick look at the school uniform's jumper, which is (no surprises) green.

Both Sue and I felt that this new school was a good extension of what she's had at Dragonflies to date - low distractions, small classrooms (she's actually going to a 6-pupil class from an 8-pupil one) and a decent ratio of 2 students per adult.

We still have to sort out the transport as well as finalising Emily's statement of need, but those are minor issues.

Looks like come 12 September, we're going to have either a "Red Fox" or a "Red Squirrel" in our midst.

School viewings

Even though Emily has a placement at the school round the corner, if she gets her statement of special needs, we'll be able to get her into one of the two schools in the borough that specialise in needs children.

We went to view one today called Forresters. They apparently focus on more integration than the alternative - Green Wrythe.

The tour was quite eye opening, and we saw the various classrooms - mainstream and base (what they call the special needs children) - as well as the gym, the music room, the base sensory room, the computer room. The only room we didn't get a tour of was the library... which is ironic really.

Sue and I are still confused as to the best steps for Emily going forward. Forresters is better for verbal communicative children, while Green Wrythe is better for kids who are still developmentally stuck - like Emily. However, Sue and I want Emily to come out of her shell and does mild integration provide that better than being with other children who don't talk?

We still need to see Green Wrythe before we make up our minds, and if we DO get a statement and accepted to either of the schools, they can decide whether they accept Emily based on the data they receive as well.

Arghhh.

School choices

I guess everyone's finding out about their school choices this week and Emily was no different.

We're hoping to get a statement for her, thus getting her into specialist classroom at one of two schools in the borough.

However, as a statement isn't guaranteed, we also had to go through the proper "nothing wrong with your child" channels. We have a good school a stone's throw around the corner from us - Stanley Park Infant - which was not only our first choice, but also the school Em got into.

It made both Sue and I quite sad to have to reflect on her special needs and the fact that she won't get the integration with normal children that a normal child would get.

Being around Emily, we tend to forget how behind she is, and things like this just really ram reality down our throats.

Still, she's getting all the help she can, Sue and I are doing what we can, and if she gets a statement, she'll be all the better off for it.

We've been given lemons, so better made lemonade than complain we don't like citrus fruit. (I may have to work on that one).

Autism Spectrum Disorder coffee morning

We attended our first Autism Spectrum Disorder coffee morning at Dragonflies today.

Over the next six sessions, we'll be discussing various aspects of living with autistic children and some strategies we can employ.

Today's session was more of an introduction, including a quite handy "what is autism". There's three main factors that are used to determine the spectrum, with a fourth - sensory - coming into play more and more.

Having attended, I think Sue and I are more confident with how we can handle Emily's disorder. It was good to hear other parents concerns like "is she being bad, or is it just her"? things that Sue and I keep asking.

I know normal kids push boundaries to see how far they can go, but I really have no idea with ASD kids.

One thing we took away from this morning was an interesting stat - 1 in 100 "normals" are so focused that they could be considered experts on a subject - whether it's jam jar labels or quantum physics. For people on the autism spectrum, that number is closer to 1 in 10. Emily's gone from having a 1% to 10% chance of being brilliant with a certain subject.

At the moment, that would be recitation of Dr Seuss and Hairy Maclary books, but feeding on this, it could bode well having an innate attention to detail, a good memory and a love of books... as they could be text books.

We also discussed the iceberg effect - where the displayed actions of a child aren't always cut and dry and there's usually quite a bit more under the surface to explain why they're doing what they're doing - be it a tantrum, staring into space, or anxiety about being in a new situation.

We mentioned Emily's compulsion to uncross peoples legs and the leaders of the group were quite mystified as to what the motive of this action could be.

Looking forward to attending the next few sessions.

Parent Teacher Meeting

Another milestone for Sue and I tonight. We had our first parent teacher evening.

You hear about them, you see them in sitcoms, but you never really know what to expect.

We went through the initial feedback regarding Emily and how she's settled in during the first half of the first term as well as the outcomes of initial Individual Education Plan (IEP) goals that have been set. Of the four goals, Em's excelling in 3 and needs help in the fourth.

Sue and I have some strategies we can try at home, including helping Em play more. We need to get more inset puzzles and give Em a more structured "play time", perhaps after dinner.

There was really two ways the meeting could have gone - a) your child is a no-hoper or b) things are looking good.

Thankfully, Emily's showing signs of improvement. There's no magic bullet getting her sorted out overnight, and we realise it'll be a long, hard slog but any encouraging news is ... encouraged.

First school meeting

Had our first school meeting this morning.

Wasn't really sure what to expect, as I can imagine loads of parents actually work and can't really afford to take off 9.30 - 11.30, even if it to discuss their child's future.

As it was, I was only the second dad there, and there were about 8 mums, including our Susan.

The meeting was quite informative, as we discussed what do with regards to applying for school's next year.

The school impressed upon us that, as parents of Dragonflies, we're in a unique position as we have to apply for a mainstream position, but our child will also be assessed through the year to see if they qualify for an SEN, basically a legally binding document outlining the requirement for special educational needs.

The groundwork for the SEN is going to take place during the second half of the first term during action called the Statutory Assessment Process (SAP), where a number of professionals - doctors, therapists, etc. - assess our children and then write this report which recommends either further special needs education or moving into mainstream school.

We need to do the mainstream app online, and choose the best school closest to us. This application has to be completed by mid January. The SAP will continue well into next year and we might find our child has a mainstream place before the SEN decision. We were told to accept the mainstream place as an SEN may not be forthcoming at all.

A lot to take in, but we eventually moved to the Children's Centre, had tea and biscuits and a more informal get to know you, which was nice.

Emily's first "full" day of school

Emily at Dragonflies.

Got Em to Dragonflies on time this morning. The transport (aka a minicab with a driver and a council "escort") arrived at our house later than it should have (about 8.40am instead of 8.20 - 8.30am), but we got to Dragonflies with time to spare.

It transpired the minicab dropped us at the wrong gate, so Em and I had to wait for the school to properly open before we could dart through to the Dragonflies room. Small inconvenience and teething issues with it being a new process.

I quickly found out, however, that our schedule was not what Dragonflies had in mind. I was under the assumption I would be there from 9-10am, to ensure Em didn't have a meltdown and then I could quietly melt away and be in the office by about 11.30.

As it transpired, they were expecting us at 9.45am for an hour, after which Emily and I would leave.

Oops.

As it was, everything was fine and Emily had a full morning of schooling. I, meanwhile, was holed up in the staff room / library where I was able to crack on with some work on my laptop.

Thankfully, my woeful scheduling enabled me to have a half hour chat with Alison, the speech and language therapist. It was quite a good chat and I filled her in on Emily (as Em's "chart" hadn't arrived from the Robin Hood Lane Clinic yet), and Alison let me know how the next year will work with her and her assistant.

On the way back to the minicab the escort asked if Em had been coming to Dragonflies long. What I WANTED to say was "you're her escort, how long have you been escorting her?" but instead I chuckled and said something along the lines of, "today's her first full day, actually." I figure you have to keep on the right side of someone who's going to be responsible for your child.

Our baby is all grows up!

Emily, possibly in a school uniform.

Today marks the end of an era for Emily. The carefree toddler days where school is a distant memory and play, eating and sleeping are the order of the day.

Starting tomorrow, she starts to become a Dragonfly. Sure the first couple of days are light touches, but by the end of the week she'll be as full time as any other child her age (i.e. 3 hours a day).

I think Sue and I feel a pang hidden deep down that our baby is growing up so quick. Sure it's only toddler school, but give it a year or so and she'll be in Kinder Garden and then Grade One (or similar UK equivalents).

Still, come December we'll have three school-free years of baby number two to look forward to before s/he has to go to school so we shouldn't lament too much.

Dragonflies home visit

We had the home visit today from Dragonflies. It gave Em's key worker and the head Dragonfly a good chance to get to know Em, as well as let Sue and I know more information about the forthcoming year.

We were left with a couple of pamphlets to review, as well as a couple of forms that need filling out.

Em starts on 20th September for a 30 minute induction. The next day she'll do an hour. If all is well from that point, she'll do the full morning from the 22nd.

The one thing I was worried about was her toilet training status. Thankfully, with Dragonflies it's ok if Em still has no control. We just have to send along nappies, wipes and emergency clothing. I'd like to think that going to the loo with other children who are actually USING the loo might spur Em on to want to do similar, but in the back of my mind I just envision Em as a middle aged woman who NEVER learnt to go to the toilet. Probably a horrid flight of fancy, rather than a realistic scenario.

The Dragonfliers also asked about various likes and dislikes that Emily has - food, activities, noises, etc.

All in all, it was quite productive and not at all the horrible experience I kinda envisioned a few days ago.

Now, we just wait for Em's first day as a big girl at big girl school.

Dragonflies home visit

We have a home visit from Dragonflies this week, in preparation for Emily starting there later this month.

Neither Sue nor I are quite sure what to expect, but in the back of my mind I keep assuming it'll be a quasi "are you fit parents" meeting or a "should we take your child away" meeting. Obviously it's won't be, as they're not child services, but I imagine there might be a small amount of them looking around the house, jotting stuff down and tutting.

Talking about it jokingly today, someone mentioned we should try and cook some bread or similar to give the place a nice homely smell. That and get the potty out of the kitchen.

Travel to Dragonflies

Got a letter through the post this very morning from Sutton council saying they've accepted our claim and Emily will be provided transport to and from school.

This is terrific news and takes a burden off Sue's and my shoulders. However, we're not out of the woods yet. We need to ensure the eventual times work for Helen or we're going to still be in trouble as the paperwork provided clearly states they can't really change the times the child is picked up as the school run works pretty close to the bone.

Fingers crossed we get over this last remaining hurdle then.

Dragonflies parent teacher meet and greet

We had our first meeting tonight at Dragonflies. A sort of pre-induction meeting to get us ready for the new school in mid-September. 

It was quite informative, which is always good at these types of things. They went through various aspects of what the children will be doing, what they can offer (things we already knew like musical therapy, occupation therapy and the like) and other sundry things like transport. 

The funniest thing is that Emily will have to wear a school uniform come September. It's not that much of a uniform tracky bottoms and a sweatshirt, but it gets her used to wearing one so when she graduates to big school, the clothing will be one less thing she'll have to get used to.

That brought up a question for Sue and I. As Emily is the muckiest mucky muck you'll ever meet, how many uniforms do we buy? One a day, two a day, 3 a week? We settled on 3 for the week, knowing full well we'll probably be seeing them in the wash quite frequently.. or else ban Emily from eating ANYTHING mucky. 

They went through quite a bit on parental interaction this evening as well, which was good. There's coffee mornings and home visits and regular meetings that it's highly suggested we attend. There'll also be weekly newsletters and information coming home from the kids. 

It really sounds like this is going to be excellent for Emily. We even met her new key worker Mrs. Watson. When we described Emily to her (she talks... sorta. Sings, but doesn't converse) she knew exactly what we were on about. This made me feel quite at ease, and that Emily's issues aren't that rare. 

In a way it's going to be strange with Emily starting school in September. She's growing up and it's just the start of a long progression of milestones that signal she's moving away from being my little baby girl... This feeling is obviously tempered by the fact that she's going to get some amazing help and I'm hoping that come this time next year there'll be quite a marked improvement. 

Related articles

• Emily got into Dragonflies (bubbytimes.blogspot.com)

Emily got into Dragonflies

Today was the day the decision team decided who was getting into Dragonflies and who wasn't.

From everything we've heard, seen and been told Emily would SERIOUSLY benefit from attending the school. Daily and weekly therapies and just an overall approach that benefits children who have disabilities.

It got to the point where we were becoming despondent thing about what would happen if she DIDN'T get in. There was a Plan B, but in the grand scheme of things it was more like a Plan R.

Thankfully, Sue called me this evening, slightly choked up, to give me the news.

Emily will be attending Dragonflies at Thomas Wall School, named after the sausage and ice cream magnate.

Needless to say, Sue and I are massively relieved and I may even crack open a beer to celebrate.